Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Hi. I've been bothered lately with lower front teeth pressure and inflamed gums, sinus and jaw pressure. I'm wondering if there's a specific forum for WAP dental questions, or if anyone here has experience with this kind of problem here, please let me know. I have structural issues, such as crowded teeth and had unsuccessful orthodontic treatments as a teen (my teeth were sanded down on left side so only my right teeth touch when biting down), along with 4 impacted wisdom teeth, which I don't want removed for fear of oral surgery. I think I had an emerging tooth removed when I was very young also. I had a long period of TMJ pain, not sure if it came before or after the orthodontic treatments. On my lower jaw, there's one tooth which has a black line at the gum line and that's where a lot of pain/pressure comes from with more swelling. A couple of other teeth have lines, not on the tooth, but on the gum where it meets the tooth. In these tender places, food tends to get stuck more easily and hard to get out. I have not flossed in years. I just started doing so, but hate it as I feel more tender afterwards. My husband keeps telling me that it'll pay off soon and the tenderness will go away, I hope so. This has been bothering me a lot for the past month and it's been hard to pinpoint where the discomfort comes from. I started out thinking it was gum/infected tooth related, but then it felt more like a jaw problem, and now again it feels like it's from the teeth/gums. It's mostly localized on my left side and from time to time I have episodes of my entire left side of the body aching, top to toe, muscles, joints and bones (this has happened in the last few years). always with lots of sinus pressure and tenderness. left side of the neck often hurts too and I can't sleep on that side, or I wake up with aching temple and neck (on that side), and sinus pressure. I believe my diet could have a lot to do with it too. I eat 'healthy', no junk whatsoever, but eat very limited foods since I also struggle with digestive issues and unpleasant reactions to many foods. My diet has been getting more and more restrictive in the last two years, starting a year after my second son was born. I feel like I'm in fairly good health but am really worried about not getting all the nutrients I need. I'm planning on going on the GAPS diet soon to see if I can heal my gut and get back to eating a more varied diet. If I'm correct, vitamin C is important for gum health and I haven't had a good source of sauerkraut this past year (I eat no other C rich foods). My diet consists of meat, bone broth, potatoes and yogurt (with rapadura). I have no idea what's related or not, but thought I'd just throw it all out there in hope that someone else has had similar experiences. Thanks! fina. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 These symptoms sound very much like mercury poisoning. Do you have amalgam fillings in your mouth? I had very severe mercury poisoning after extensive dental work as a teen and it has taken many, many years to detoxify. I am still hyper-sensitive to mercury and have to not only avoid fish, but even the trace amounts in things like ConcenTrace mineral supplements (which, like all the other trace minerals it contains, are much more readily absorbed even in trace amounts). I found chewing CoQ10 capsules healed the bleeding gums. I also used wheat grass extensively, both as daily juice for a couple years, plus actually chewing wads of the grass like gum, and I still eat about 3 or 4 whole bunches of cilantro per week. Vibrant Life Oral Guard Dental Spray is an almost miraculous natural product containing goldenseal and other herbs, that helped immeasurably. Of course, I had all the amalgams safely removed quite a few years ago by my hero Dr King, and did bi-weekly Vitamin C intravenously at the time. I believe the information I got from Leo Cashman at DAMS literally saved my life. > > Hi. > I've been bothered lately with lower front teeth pressure and inflamed gums, sinus and jaw pressure. I'm wondering if there's a specific forum for WAP dental questions, or if anyone here has experience with this kind of problem here, please let me know. > > I have structural issues, such as crowded teeth and had unsuccessful orthodontic treatments as a teen (my teeth were sanded down on left side so only my right teeth touch when biting down), along with 4 impacted wisdom teeth, which I don't want removed for fear of oral surgery. I think I had an emerging tooth removed when I was very young also. I had a long period of TMJ pain, not sure if it came before or after the orthodontic treatments. > > On my lower jaw, there's one tooth which has a black line at the gum line and that's where a lot of pain/pressure comes from with more swelling. A couple of other teeth have lines, not on the tooth, but on the gum where it meets the tooth. In these tender places, food tends to get stuck more easily and hard to get out. I have not flossed in years. I just started doing so, but hate it as I feel more tender afterwards. My husband keeps telling me that it'll pay off soon and the tenderness will go away, I hope so. > > This has been bothering me a lot for the past month and it's been hard to pinpoint where the discomfort comes from. I started out thinking it was gum/infected tooth related, but then it felt more like a jaw problem, and now again it feels like it's from the teeth/gums. It's mostly localized on my left side and from time to time I have episodes of my entire left side of the body aching, top to toe, muscles, joints and bones (this has happened in the last few years). always with lots of sinus pressure and tenderness. left side of the neck often hurts too and I can't sleep on that side, or I wake up with aching temple and neck (on that side), and sinus pressure. > > I believe my diet could have a lot to do with it too. I eat 'healthy', no junk whatsoever, but eat very limited foods since I also struggle with digestive issues and unpleasant reactions to many foods. My diet has been getting more and more restrictive in the last two years, starting a year after my second son was born. I feel like I'm in fairly good health but am really worried about not getting all the nutrients I need. I'm planning on going on the GAPS diet soon to see if I can heal my gut and get back to eating a more varied diet. If I'm correct, vitamin C is important for gum health and I haven't had a good source of sauerkraut this past year (I eat no other C rich foods). My diet consists of meat, bone broth, potatoes and yogurt (with rapadura). > > I have no idea what's related or not, but thought I'd just throw it all out there in hope that someone else has had similar experiences. > > Thanks! > fina. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 Check out the book called Cure Tooth Decay by Ramiel Nagel. There are a couple of different subtitles, but according to his website, the insides of the books are the same. He follows the WAP guidelines in his recommendations. I'm not finished with the book yet, so can't really review it. If you go to his webiste, you can see the table of contents (maybe on Amazon, too). Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 No, I don't have any amalgam fillings. I grew up in Sweden after they stopped using mercury. Which symptoms are similar? Did you also have the sensation of pressure/stiff jaw? I had been thinking the pressure was from one of the impacted wisdom teeth because of the last tooth being slightly out of place, but have learned that teeth can shift due to gingivitis as well. Seems like many different conditions will cause the same symptoms, which is adding to my frustration at the moment. On a positive note, I've noticed some improvement on my left side since I started flossing and being mindful cleaning out my mouth after eating yogurt (sweetened with rapadura), especially the gum area. Also, I have been drinking pork stock daily. Maybe my body is reacting to gum inflamation the same way we would react to mercury poisoning? Unless, I'm being exposed to it from another source. fina > > > > These symptoms sound very much like mercury poisoning. Do you have amalgam fillings in your mouth? I had very severe mercury poisoning after extensive dental work as a teen and it has taken many, many years to detoxify. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 Thanks Diane! I had heard of it before, but have not read it. I've checked out his website, and will see if I can buy the book over here in Sweden. My boys are very prone to cavities, my husband has some too, so we'll all make use of the information for sure. fina > > > > Check out the book called Cure Tooth Decay by Ramiel Nagel. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Yes, I had the pressure/stiff jaw sensation, bleeding gums, a lot of tingling in the jaw area and sometimes all the way to the fingers. Plus black lines around the gum tissue and the base of some teeth, and frequent abscesses. Even though my mouth was full of amalgams from childhood, the symptoms didn't really manifest until I had a gold bridge put in to replace several teeth lost in an accident, and added (at great expense) several gold crowns. I found out later that the worse thing you can do is put gold in the same mouth with mercury, because it causes some kind of electrical current that makes the amalgams release mercury vapor faster. Like you, I also had a botched alignment job where they filed down some teeth in an attempt to make them match up. All it did was cause TMJ which only added to the inflammation. I also had terrible brain fog, memory loss, and unexplainable outbursts of anger. If you are mercury sensitive (and I don't believe people are born that way--they become sensitive from exposure), you could be getting it from fish. I've heard Sweden is big on fish consumption. Or from living near a coal-burning power plant, or from vaccines, or from your drinking water. Thanks to Leo Cashman, Hal Huggins, and others, I'm pretty much cleaned up and healed now. I eat canned sardines, and wild Alaskan salmon on occasion, but no other fish. I'm very careful about any trace minerals or salt that come from Great Salt Lake because they contain highly bio-available trace amounts of mercury. I still have some gold in my mouth, but no more mercury. (Unbelievably, when Dr King removed the gold crowns, he found amalgam under them--the former dentist had just added the crowns right on top.) I still use chlorella and spirulina daily, eat a lot of greens, and every couple years do consecutive-day saunas for a couple weeks. I use Miessence mint toothpaste with no chemicals or glycerin, eat a lot of unhulled sesame seeds for the calcium, and am basically trying to re-mineralize the enamel and (maybe?) heal the damaged areas so I can get rid of the remaining gold inlays. I also eat a lot of cabbage for the boron, and onions and raw eggs for the sulphur. I discovered the totally amazing Dr. Tichenor's mouthwash a few years ago, which contains arnica, and not only relieves pain and swelling, but is excellent for the nasty insect bites you get in New Orleans where it is made. It was the CoQ10 that totally healed the gingivitis. It's been a long journey. > > > > > > > > These symptoms sound very much like mercury poisoning. Do you have amalgam fillings in your mouth? I had very severe mercury poisoning after extensive dental work as a teen and it has taken many, many years to detoxify. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Thanks for sharing your experience. Very helpful for me. About your botched alignment job, is your bite OK now, and if so, did you have to go to another orthodontist to get it fixed, or did it fix 'itself'? I just learned that receding gums can be caused by clenching, and with most of my receding gums being on the right side where the molars are touching each other too much for comfort (they filed down the left side too much), I'm wondering if I have to find another orthodontist to file down that side. It's been uncomfortable for me for a long time, but I'm not fond of the idea of risking another botched job. And with our terrible state of government healthcare (Sweden), I do not think I'd have access to a good dentist. But I'm unsure if my gums could heal with my bite being so uneven. Yes, I could have been exposed to mercury poisoning from somewhere. I didn't eat much fish growing up, but have had my share of vaccinations. And now back to drinking tap water since moving back to Sweden last year. Plus there are so many other chemicals in food and water supply, not to mention aluminum which supposedly magnifies the damaging effect of mercury. Thanks for the recommendations. I'll look into them. fina > > > > > > > > > > > > These symptoms sound very much like mercury poisoning. Do you have > amalgam fillings in your mouth? I had very severe mercury poisoning > after extensive dental work as a teen and it has taken many, many years > to detoxify. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Yes, my bite is fine now, no problems at all. No, I would never, never, never go to an orthodontist, not for any reason whatsoever! As you can see, I have very strong feelings about that, which I won't go into now, but I don't believe any good comes out of what they do. Especially tragic is all the people who take their children to them and fill their mouths with metal and plastic instead of feeding them right. They have no idea the price they will pay later on. Anyway, Dr King fixed my bite, and he did it by adding, not taking away like the other guy did, and certainly not by trying to force the teeth to move. I went through comprehensive blood testing to see which of the dozens of composite materials available were compatible with my particular body chemistry. I didn't want porcelain because of the high aluminum content. When he found the right one based on my labs, he used it to replace the gold crowns. And gave me homeopathic remedies for pain and detoxing. They were regular-sized crowns, which added too much height in the places that had been filed down, and way, way too much height in places that hadn't been filed. Then he had me bite down on something that looked like carbon paper. He would look at the black spots it left behind on the new composite crown, and file down just those spots, on the composite, not the tooth. Then check again. And again. And again. Each time, he would painstakingly file just the right amount, until I could tell that every bump and groove fit perfectly together with the bumps and grooves on the opposite tooth. He just replaced one crown at a time, so we made sure it was right before going on to the next one. When he finished, I could chew and bite perfectly without any pain, and my jaw joints didn't pop any more. I went to a chiropractor for a adjustments for a few months, and a Chinese doctor who did acupuncture and gave me herbs to re-balance everything. I felt like I was re-born. My energy soared, my sleep became deep and restful, even my vision improved, and I will be ever grateful to Dr. King for restoring my life. May he rest in peace. > > Thanks for sharing your experience. Very helpful for me. > > About your botched alignment job, is your bite OK now, and if so, did you have to go to another orthodontist to get it fixed, or did it fix 'itself'? I just learned that receding gums can be caused by clenching, and with most of my receding gums being on the right side where the molars are touching each other too much for comfort (they filed down the left side too much), I'm wondering if I have to find another orthodontist to file down that side. It's been uncomfortable for me for a long time, but I'm not fond of the idea of risking another botched job. And with our terrible state of government healthcare (Sweden), I do not think I'd have access to a good dentist. > But I'm unsure if my gums could heal with my bite being so uneven. > > Yes, I could have been exposed to mercury poisoning from somewhere. I didn't eat much fish growing up, but have had my share of vaccinations. And now back to drinking tap water since moving back to Sweden last year. Plus there are so many other chemicals in food and water supply, not to mention aluminum which supposedly magnifies the damaging effect of mercury. > > Thanks for the recommendations. I'll look into them. > > fina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Thanks for affirming my hesitation, and for all your very helpful information. I hope I can find a dentist like that here, or somewhere in Europe at least. Yes, adding makes much more sense than taking away. I know I'm not doing that again. I wish I could go back in time and say no when they offered me orthodontics! But I was only 18. fina. > > > > Thanks for sharing your experience. Very helpful for me. > > > > About your botched alignment job, is your bite OK now, and if so, did > you have to go to another orthodontist to get it fixed, or did it fix > 'itself'? I just learned that receding gums can be caused by clenching, > and with most of my receding gums being on the right side where the > molars are touching each other too much for comfort (they filed down the > left side too much), I'm wondering if I have to find another > orthodontist to file down that side. It's been uncomfortable for me for > a long time, but I'm not fond of the idea of risking another botched > job. And with our terrible state of government healthcare (Sweden), I do > not think I'd have access to a good dentist. > > But I'm unsure if my gums could heal with my bite being so uneven. > > > > Yes, I could have been exposed to mercury poisoning from somewhere. I > didn't eat much fish growing up, but have had my share of vaccinations. > And now back to drinking tap water since moving back to Sweden last > year. Plus there are so many other chemicals in food and water supply, > not to mention aluminum which supposedly magnifies the damaging effect > of mercury. > > > > Thanks for the recommendations. I'll look into them. > > > > fina > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2011 Report Share Posted March 27, 2011 Here are some places I would suggest you contact, for finding someone in Sweden: http://www.biodent.info/ <http://www.biodent.info/> http://www.dr-lechner.de/ <http://www.dr-lechner.de/> (Dr Lechner is in Munich) http://www.biodenth.be/ <http://www.biodenth.be/> (Dr Pascal Eppe is in Belgium) http://www.lef.org/protocols/prtcl-156.shtml <http://www.lef.org/protocols/prtcl-156.shtml> (You can order your own lab testing for heavy metal toxicity here--not sure if they have labs in Europe) http://www.dent-michel.de/ <http://www.dent-michel.de/> (Dr Rainer Michel runs a dental materials lab in Europe, where your dentist can get non-toxic materials if he doesn't have a source) http://www.kvicksilver.org/ <http://www.kvicksilver.org/> (This organization is in Sweden and should be able to give you referrals to non-toxic dentists) These people are in Denmark (I don't have contact info): Dorrit Herwagen DDS-Hellerup Henrik Lichtenberg DDS-Hillerrod Pedersen DDS-Herfolgeand VanLeeuwen is in Amsterdam--Any of them should be able to give you other referrals. Eat chlorella, chew CoQ10, take clay baths and saunas, pray a lot, and best wishes! > > > > > > Thanks for sharing your experience. Very helpful for me. > > > > > > About your botched alignment job, is your bite OK now, and if so, did > > you have to go to another orthodontist to get it fixed, or did it fix > > 'itself'? I just learned that receding gums can be caused by clenching, > > and with most of my receding gums being on the right side where the > > molars are touching each other too much for comfort (they filed down the > > left side too much), I'm wondering if I have to find another > > orthodontist to file down that side. It's been uncomfortable for me for > > a long time, but I'm not fond of the idea of risking another botched > > job. And with our terrible state of government healthcare (Sweden), I do > > not think I'd have access to a good dentist. > > > But I'm unsure if my gums could heal with my bite being so uneven. > > > > > > Yes, I could have been exposed to mercury poisoning from somewhere. I > > didn't eat much fish growing up, but have had my share of vaccinations. > > And now back to drinking tap water since moving back to Sweden last > > year. Plus there are so many other chemicals in food and water supply, > > not to mention aluminum which supposedly magnifies the damaging effect > > of mercury. > > > > > > Thanks for the recommendations. I'll look into them. > > > > > > fina > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 We have the same problem. Because of 's immune deficiency his bone growth is retarded - so his upper jaw is substantially smaller than his lower jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now starting down the path of braces, head gear, etc. at age 9 and at an estimated cost of $10,000. Our insurance will only cover $3000. The hospital for Sick Children was recommending that we wait until is 16 and then have his jaw surgically fixed. This would be covered by our provincial medical plan, but far more invasive and it will take a long time to heal. AND it doesn't mean that we won't still have to get him braces. I have tried to find coverage for the extra money that the braces head gear plan will cost us, but so far I haven't had much luck. It is unfortunate that the better treatment is not covered - but the painful invasive and more risky treatment would be free. There should be special funding for dental complications from a chronic disease - but I have yet to find it. I will appeal to our benefit plan with doctor and orthodontist letters, but chances are not good. I have asked our Immunology Department to research other funding options for us - maybe the IDF has some ideas ? Good luck ! Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) From: osdbmom@... Date: Fri, 13 May 2011 20:05:49 +0000 Subject: Dental problems I have some questions about possible dental problems that might be associated with CVID. Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am curious to see if other kids with cvid might have similar issues. We have been rec'd to see an orthodontist, and Ive just gotten off the phone with the insurance who are telling me they will only cover orthodontist if it can be proven to be related to CVID, or a genetic disease of some kind. Some of the problems he has are: frequent cavities, despite good and regular dental care....he goes every six months for a cleaning, I always take him right in for fillings, etc. Often, when his baby teeth fall out, they are crumbly and soft. He keeps having tooth abcesses, and they dont clear up....I take him in immediately, the dentist will drill and drain it, and start him right on abx, and it will just keep getting worse or coming back. Right now, probably the biggest problems he's got is that bc of his health problems, he is still and has been for years, failure to thrive and his bone age is about 2 or so years behind, so he has the jaw size of a very small 6-7 year old, and the teeth of a 9 year old coming in, there is no room, he's got teeth coming in the wrong places, or coming in sideways, and in some areas where we had to put a space maintainer in (bc we had to pull the abscessed tooth) the tooth above it is coming in, but coming into the wrong spot and going the wrong way, so there is some quandry about whether it would be best to take the space maintainers out, and let those big teeth come in in the wrong spot, or leave them in and hold the sideways adult teeth in his gums until there is more room. It is extremely likely he will need braces at some point, and they would like to get a plan going now. I am taking him in to his pcp soon for a well child check and I wanted to ask about the possibility of a vitamin D/ calcium deficiency, I am curious if that is what causes his teeth to be so bad. I will need a dentist and an orthodontist to write letters on his behalf stating the reason for the state of his teeth for the insurance, unfortunately his regular dentist has just retired and the one replacing him is not looking like one we will be keeping. any advice would be appreciated, valarie mom to 3 w/cvid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 We have the same problem. Because of 's immune deficiency his bone growth is retarded - so his upper jaw is substantially smaller than his lower jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now starting down the path of braces, head gear, etc. at age 9 and at an estimated cost of $10,000. Our insurance will only cover $3000. The hospital for Sick Children was recommending that we wait until is 16 and then have his jaw surgically fixed. This would be covered by our provincial medical plan, but far more invasive and it will take a long time to heal. AND it doesn't mean that we won't still have to get him braces. I have tried to find coverage for the extra money that the braces head gear plan will cost us, but so far I haven't had much luck. It is unfortunate that the better treatment is not covered - but the painful invasive and more risky treatment would be free. There should be special funding for dental complications from a chronic disease - but I have yet to find it. I will appeal to our benefit plan with doctor and orthodontist letters, but chances are not good. I have asked our Immunology Department to research other funding options for us - maybe the IDF has some ideas ? Good luck ! Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) From: osdbmom@... Date: Fri, 13 May 2011 20:05:49 +0000 Subject: Dental problems I have some questions about possible dental problems that might be associated with CVID. Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am curious to see if other kids with cvid might have similar issues. We have been rec'd to see an orthodontist, and Ive just gotten off the phone with the insurance who are telling me they will only cover orthodontist if it can be proven to be related to CVID, or a genetic disease of some kind. Some of the problems he has are: frequent cavities, despite good and regular dental care....he goes every six months for a cleaning, I always take him right in for fillings, etc. Often, when his baby teeth fall out, they are crumbly and soft. He keeps having tooth abcesses, and they dont clear up....I take him in immediately, the dentist will drill and drain it, and start him right on abx, and it will just keep getting worse or coming back. Right now, probably the biggest problems he's got is that bc of his health problems, he is still and has been for years, failure to thrive and his bone age is about 2 or so years behind, so he has the jaw size of a very small 6-7 year old, and the teeth of a 9 year old coming in, there is no room, he's got teeth coming in the wrong places, or coming in sideways, and in some areas where we had to put a space maintainer in (bc we had to pull the abscessed tooth) the tooth above it is coming in, but coming into the wrong spot and going the wrong way, so there is some quandry about whether it would be best to take the space maintainers out, and let those big teeth come in in the wrong spot, or leave them in and hold the sideways adult teeth in his gums until there is more room. It is extremely likely he will need braces at some point, and they would like to get a plan going now. I am taking him in to his pcp soon for a well child check and I wanted to ask about the possibility of a vitamin D/ calcium deficiency, I am curious if that is what causes his teeth to be so bad. I will need a dentist and an orthodontist to write letters on his behalf stating the reason for the state of his teeth for the insurance, unfortunately his regular dentist has just retired and the one replacing him is not looking like one we will be keeping. any advice would be appreciated, valarie mom to 3 w/cvid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 My son too has SEVERE overbite. We were told it was due to his severe sinus disease as an infant and young child. He had to open an airway to be able to breathe so his arch heightened probably with is tongue. He started in WA state at age of 8 with headgear and then we had to move cross country. In Oklahoma the state helped with braces so once he got his anxiety under control ( ran out of building and hid under my car when they came at him with a glue syringe) and a BETTER orthodontist we got them on. . A VERY long and expensive process. He has now been in braces for another year that I am paying for out of pocket. He has also had pretty severe gum disease that needs surgery but it will be $1000 to remove a piece of skin that has overgrown and the state dental insurance does not pay for it. So this has been a long 7 year process. I have been told that he will also need jaw surgery when he gets older but doubt I will move there for him. The BIGGEST problem has been the ABUSE and BULLYING he endured in 3rd and 4th grade about his overbite. The day he got on his braces was the day that he began to smile again. He use to cover his teeth with his upper lip and hold tight to try to deal with the overbite. It broke my heart. I had NO idea that there was a possibility to get it paid for through insurance. BARBIE ________________________________ From: Kim MacEachern <kimmaceachern@...> Group < > Sent: Mon, May 16, 2011 6:31:15 AM Subject: RE: Dental problems We have the same problem. Because of 's immune deficiency his bone growth is retarded - so his upper jaw is substantially smaller than his lower jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now starting down the path of braces, head gear, etc. at age 9 and at an estimated cost of $10,000. Our insurance will only cover $3000. The hospital for Sick Children was recommending that we wait until is 16 and then have his jaw surgically fixed. This would be covered by our provincial medical plan, but far more invasive and it will take a long time to heal. AND it doesn't mean that we won't still have to get him braces. I have tried to find coverage for the extra money that the braces head gear plan will cost us, but so far I haven't had much luck. It is unfortunate that the better treatment is not covered - but the painful invasive and more risky treatment would be free. There should be special funding for dental complications from a chronic disease - but I have yet to find it. I will appeal to our benefit plan with doctor and orthodontist letters, but chances are not good. I have asked our Immunology Department to research other funding options for us - maybe the IDF has some ideas ? Good luck ! Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) From: osdbmom@... Date: Fri, 13 May 2011 20:05:49 +0000 Subject: Dental problems I have some questions about possible dental problems that might be associated with CVID. Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am curious to see if other kids with cvid might have similar issues. We have been rec'd to see an orthodontist, and Ive just gotten off the phone with the insurance who are telling me they will only cover orthodontist if it can be proven to be related to CVID, or a genetic disease of some kind. Some of the problems he has are: frequent cavities, despite good and regular dental care....he goes every six months for a cleaning, I always take him right in for fillings, etc. Often, when his baby teeth fall out, they are crumbly and soft. He keeps having tooth abcesses, and they dont clear up....I take him in immediately, the dentist will drill and drain it, and start him right on abx, and it will just keep getting worse or coming back. Right now, probably the biggest problems he's got is that bc of his health problems, he is still and has been for years, failure to thrive and his bone age is about 2 or so years behind, so he has the jaw size of a very small 6-7 year old, and the teeth of a 9 year old coming in, there is no room, he's got teeth coming in the wrong places, or coming in sideways, and in some areas where we had to put a space maintainer in (bc we had to pull the abscessed tooth) the tooth above it is coming in, but coming into the wrong spot and going the wrong way, so there is some quandry about whether it would be best to take the space maintainers out, and let those big teeth come in in the wrong spot, or leave them in and hold the sideways adult teeth in his gums until there is more room. It is extremely likely he will need braces at some point, and they would like to get a plan going now. I am taking him in to his pcp soon for a well child check and I wanted to ask about the possibility of a vitamin D/ calcium deficiency, I am curious if that is what causes his teeth to be so bad. I will need a dentist and an orthodontist to write letters on his behalf stating the reason for the state of his teeth for the insurance, unfortunately his regular dentist has just retired and the one replacing him is not looking like one we will be keeping. any advice would be appreciated, valarie mom to 3 w/cvid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 My son too has SEVERE overbite. We were told it was due to his severe sinus disease as an infant and young child. He had to open an airway to be able to breathe so his arch heightened probably with is tongue. He started in WA state at age of 8 with headgear and then we had to move cross country. In Oklahoma the state helped with braces so once he got his anxiety under control ( ran out of building and hid under my car when they came at him with a glue syringe) and a BETTER orthodontist we got them on. . A VERY long and expensive process. He has now been in braces for another year that I am paying for out of pocket. He has also had pretty severe gum disease that needs surgery but it will be $1000 to remove a piece of skin that has overgrown and the state dental insurance does not pay for it. So this has been a long 7 year process. I have been told that he will also need jaw surgery when he gets older but doubt I will move there for him. The BIGGEST problem has been the ABUSE and BULLYING he endured in 3rd and 4th grade about his overbite. The day he got on his braces was the day that he began to smile again. He use to cover his teeth with his upper lip and hold tight to try to deal with the overbite. It broke my heart. I had NO idea that there was a possibility to get it paid for through insurance. BARBIE ________________________________ From: Kim MacEachern <kimmaceachern@...> Group < > Sent: Mon, May 16, 2011 6:31:15 AM Subject: RE: Dental problems We have the same problem. Because of 's immune deficiency his bone growth is retarded - so his upper jaw is substantially smaller than his lower jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now starting down the path of braces, head gear, etc. at age 9 and at an estimated cost of $10,000. Our insurance will only cover $3000. The hospital for Sick Children was recommending that we wait until is 16 and then have his jaw surgically fixed. This would be covered by our provincial medical plan, but far more invasive and it will take a long time to heal. AND it doesn't mean that we won't still have to get him braces. I have tried to find coverage for the extra money that the braces head gear plan will cost us, but so far I haven't had much luck. It is unfortunate that the better treatment is not covered - but the painful invasive and more risky treatment would be free. There should be special funding for dental complications from a chronic disease - but I have yet to find it. I will appeal to our benefit plan with doctor and orthodontist letters, but chances are not good. I have asked our Immunology Department to research other funding options for us - maybe the IDF has some ideas ? Good luck ! Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) From: osdbmom@... Date: Fri, 13 May 2011 20:05:49 +0000 Subject: Dental problems I have some questions about possible dental problems that might be associated with CVID. Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am curious to see if other kids with cvid might have similar issues. We have been rec'd to see an orthodontist, and Ive just gotten off the phone with the insurance who are telling me they will only cover orthodontist if it can be proven to be related to CVID, or a genetic disease of some kind. Some of the problems he has are: frequent cavities, despite good and regular dental care....he goes every six months for a cleaning, I always take him right in for fillings, etc. Often, when his baby teeth fall out, they are crumbly and soft. He keeps having tooth abcesses, and they dont clear up....I take him in immediately, the dentist will drill and drain it, and start him right on abx, and it will just keep getting worse or coming back. Right now, probably the biggest problems he's got is that bc of his health problems, he is still and has been for years, failure to thrive and his bone age is about 2 or so years behind, so he has the jaw size of a very small 6-7 year old, and the teeth of a 9 year old coming in, there is no room, he's got teeth coming in the wrong places, or coming in sideways, and in some areas where we had to put a space maintainer in (bc we had to pull the abscessed tooth) the tooth above it is coming in, but coming into the wrong spot and going the wrong way, so there is some quandry about whether it would be best to take the space maintainers out, and let those big teeth come in in the wrong spot, or leave them in and hold the sideways adult teeth in his gums until there is more room. It is extremely likely he will need braces at some point, and they would like to get a plan going now. I am taking him in to his pcp soon for a well child check and I wanted to ask about the possibility of a vitamin D/ calcium deficiency, I am curious if that is what causes his teeth to be so bad. I will need a dentist and an orthodontist to write letters on his behalf stating the reason for the state of his teeth for the insurance, unfortunately his regular dentist has just retired and the one replacing him is not looking like one we will be keeping. any advice would be appreciated, valarie mom to 3 w/cvid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 thats a shame, Barbie, he has been through so much:( Brennan doesnt have really cosmetic problems that others can see....yet. I would like to keep it that way. I worry that with as bad as his baby teeth have been...the cavities,abscesses, and crumbling soft teeth his adult teeth will have the same trouble. And then of course he is so little, and thos adult teeth are coming in and there is no room. So now he has adult teeth coming in through his gums, up near the top, sideways and shoving other teeth in the wrong directions, its a mess. Im havng a hard time right now...our regular dentist retired and the new dentist refuses to let Brennan use laughing gas....I took him last week, not knowing this, and after my kid spent all day with an IV in his arm for IG, went to the dentist and he rubbed a little numbing gel on his gum and left it maybe 30 seconds and then gave him two shots!! I asked him to wait, I told him our former dentist always used laughing gas and he said " oh, he'll be fine " and did it anyway. Of course since I didnt know, Brennan wasnt prepared and it really hurt him....now he is scared of the dentist and supposed to go back this week for mroe fillings, but Im thinking of cancelling that and trying to find a dentist to take him on who will use laughing gas. Gosh, he's only 9!! and looking ahead to all the dental work he will need, I dont want him to be traumatized and scared to go. It seems like there is always more to worry about with these kids. valarie mom to 3 w/cvid > > My son too has SEVERE overbite. We were told it was due to his severe sinus > disease as an infant and young child. He had to open an airway to be able to > breathe so his arch heightened probably with is tongue. He started in WA state > at age of 8 with headgear and then we had to move cross country. In Oklahoma > the state helped with braces so once he got his anxiety under control ( ran out > of building and hid under my car when they came at him with a glue syringe) > and a BETTER orthodontist we got them on. . A VERY long and expensive process. > He has now been in braces for another year that I am paying for out of pocket. > He has also had pretty severe gum disease that needs surgery but it will be > $1000 to remove a piece of skin that has overgrown and the state dental > insurance does not pay for it. So this has been a long 7 year process. I have > been told that he will also need jaw surgery when he gets older but doubt I will > move there for him. The BIGGEST problem has been the ABUSE and BULLYING he > endured in 3rd and 4th grade about his overbite. The day he got on his braces > was the day that he began to smile again. He use to cover his teeth with his > upper lip and hold tight to try to deal with the overbite. It broke my heart. I > had NO idea that there was a possibility to get it paid for through insurance. > BARBIE > > > > > > ________________________________ > From: Kim MacEachern <kimmaceachern@...> > Group < > > Sent: Mon, May 16, 2011 6:31:15 AM > Subject: RE: Dental problems > > > We have the same problem. Because of 's immune deficiency his bone > growth is retarded - so his upper jaw is substantially smaller than his lower > jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now > starting down the path of braces, head gear, etc. at age 9 and at an estimated > cost of $10,000. Our insurance will only cover $3000. > > The hospital for Sick Children was recommending that we wait until is 16 > and then have his jaw surgically fixed. This would be covered by our provincial > medical plan, but far more invasive and it will take a long time to heal. AND > it doesn't mean that we won't still have to get him braces. > > I have tried to find coverage for the extra money that the braces head gear plan > will cost us, but so far I haven't had much luck. It is unfortunate that the > better treatment is not covered - but the painful invasive and more risky > treatment would be free. There should be special funding for dental > complications from a chronic disease - but I have yet to find it. > > I will appeal to our benefit plan with doctor and orthodontist letters, but > chances are not good. I have asked our Immunology Department to research other > funding options for us - maybe the IDF has some ideas ? > > Good luck ! > > Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) > > > > > > From: osdbmom@... > Date: Fri, 13 May 2011 20:05:49 +0000 > Subject: Dental problems > > > > > > > I have some questions about possible dental problems that might be associated > with CVID. > Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am > curious to see if other kids with cvid might have similar issues. We have been > rec'd to see an orthodontist, and Ive just gotten off the phone with the > insurance who are telling me they will only cover orthodontist if it can be > proven to be related to CVID, or a genetic disease of some kind. > Some of the problems he has are: frequent cavities, despite good and regular > dental care....he goes every six months for a cleaning, I always take him right > in for fillings, etc. Often, when his baby teeth fall out, they are crumbly and > soft. He keeps having tooth abcesses, and they dont clear up....I take him in > immediately, the dentist will drill and drain it, and start him right on abx, > and it will just keep getting worse or coming back. > > Right now, probably the biggest problems he's got is that bc of his health > problems, he is still and has been for years, failure to thrive and his bone age > is about 2 or so years behind, so he has the jaw size of a very small 6-7 year > old, and the teeth of a 9 year old coming in, there is no room, he's got teeth > coming in the wrong places, or coming in sideways, and in some areas where we > had to put a space maintainer in (bc we had to pull the abscessed tooth) the > tooth above it is coming in, but coming into the wrong spot and going the wrong > way, so there is some quandry about whether it would be best to take the space > maintainers out, and let those big teeth come in in the wrong spot, or leave > them in and hold the sideways adult teeth in his gums until there is more room. > It is extremely likely he will need braces at some point, and they would like to > get a plan going now. > I am taking him in to his pcp soon for a well child check and I wanted to ask > about the possibility of a vitamin D/ calcium deficiency, I am curious if that > is what causes his teeth to be so bad. > > I will need a dentist and an orthodontist to write letters on his behalf stating > the reason for the state of his teeth for the insurance, unfortunately his > regular dentist has just retired and the one replacing him is not looking like > one we will be keeping. > > > any advice would be appreciated, > > valarie > mom to 3 w/cvid > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 thats a shame, Barbie, he has been through so much:( Brennan doesnt have really cosmetic problems that others can see....yet. I would like to keep it that way. I worry that with as bad as his baby teeth have been...the cavities,abscesses, and crumbling soft teeth his adult teeth will have the same trouble. And then of course he is so little, and thos adult teeth are coming in and there is no room. So now he has adult teeth coming in through his gums, up near the top, sideways and shoving other teeth in the wrong directions, its a mess. Im havng a hard time right now...our regular dentist retired and the new dentist refuses to let Brennan use laughing gas....I took him last week, not knowing this, and after my kid spent all day with an IV in his arm for IG, went to the dentist and he rubbed a little numbing gel on his gum and left it maybe 30 seconds and then gave him two shots!! I asked him to wait, I told him our former dentist always used laughing gas and he said " oh, he'll be fine " and did it anyway. Of course since I didnt know, Brennan wasnt prepared and it really hurt him....now he is scared of the dentist and supposed to go back this week for mroe fillings, but Im thinking of cancelling that and trying to find a dentist to take him on who will use laughing gas. Gosh, he's only 9!! and looking ahead to all the dental work he will need, I dont want him to be traumatized and scared to go. It seems like there is always more to worry about with these kids. valarie mom to 3 w/cvid > > My son too has SEVERE overbite. We were told it was due to his severe sinus > disease as an infant and young child. He had to open an airway to be able to > breathe so his arch heightened probably with is tongue. He started in WA state > at age of 8 with headgear and then we had to move cross country. In Oklahoma > the state helped with braces so once he got his anxiety under control ( ran out > of building and hid under my car when they came at him with a glue syringe) > and a BETTER orthodontist we got them on. . A VERY long and expensive process. > He has now been in braces for another year that I am paying for out of pocket. > He has also had pretty severe gum disease that needs surgery but it will be > $1000 to remove a piece of skin that has overgrown and the state dental > insurance does not pay for it. So this has been a long 7 year process. I have > been told that he will also need jaw surgery when he gets older but doubt I will > move there for him. The BIGGEST problem has been the ABUSE and BULLYING he > endured in 3rd and 4th grade about his overbite. The day he got on his braces > was the day that he began to smile again. He use to cover his teeth with his > upper lip and hold tight to try to deal with the overbite. It broke my heart. I > had NO idea that there was a possibility to get it paid for through insurance. > BARBIE > > > > > > ________________________________ > From: Kim MacEachern <kimmaceachern@...> > Group < > > Sent: Mon, May 16, 2011 6:31:15 AM > Subject: RE: Dental problems > > > We have the same problem. Because of 's immune deficiency his bone > growth is retarded - so his upper jaw is substantially smaller than his lower > jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now > starting down the path of braces, head gear, etc. at age 9 and at an estimated > cost of $10,000. Our insurance will only cover $3000. > > The hospital for Sick Children was recommending that we wait until is 16 > and then have his jaw surgically fixed. This would be covered by our provincial > medical plan, but far more invasive and it will take a long time to heal. AND > it doesn't mean that we won't still have to get him braces. > > I have tried to find coverage for the extra money that the braces head gear plan > will cost us, but so far I haven't had much luck. It is unfortunate that the > better treatment is not covered - but the painful invasive and more risky > treatment would be free. There should be special funding for dental > complications from a chronic disease - but I have yet to find it. > > I will appeal to our benefit plan with doctor and orthodontist letters, but > chances are not good. I have asked our Immunology Department to research other > funding options for us - maybe the IDF has some ideas ? > > Good luck ! > > Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) > > > > > > From: osdbmom@... > Date: Fri, 13 May 2011 20:05:49 +0000 > Subject: Dental problems > > > > > > > I have some questions about possible dental problems that might be associated > with CVID. > Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am > curious to see if other kids with cvid might have similar issues. We have been > rec'd to see an orthodontist, and Ive just gotten off the phone with the > insurance who are telling me they will only cover orthodontist if it can be > proven to be related to CVID, or a genetic disease of some kind. > Some of the problems he has are: frequent cavities, despite good and regular > dental care....he goes every six months for a cleaning, I always take him right > in for fillings, etc. Often, when his baby teeth fall out, they are crumbly and > soft. He keeps having tooth abcesses, and they dont clear up....I take him in > immediately, the dentist will drill and drain it, and start him right on abx, > and it will just keep getting worse or coming back. > > Right now, probably the biggest problems he's got is that bc of his health > problems, he is still and has been for years, failure to thrive and his bone age > is about 2 or so years behind, so he has the jaw size of a very small 6-7 year > old, and the teeth of a 9 year old coming in, there is no room, he's got teeth > coming in the wrong places, or coming in sideways, and in some areas where we > had to put a space maintainer in (bc we had to pull the abscessed tooth) the > tooth above it is coming in, but coming into the wrong spot and going the wrong > way, so there is some quandry about whether it would be best to take the space > maintainers out, and let those big teeth come in in the wrong spot, or leave > them in and hold the sideways adult teeth in his gums until there is more room. > It is extremely likely he will need braces at some point, and they would like to > get a plan going now. > I am taking him in to his pcp soon for a well child check and I wanted to ask > about the possibility of a vitamin D/ calcium deficiency, I am curious if that > is what causes his teeth to be so bad. > > I will need a dentist and an orthodontist to write letters on his behalf stating > the reason for the state of his teeth for the insurance, unfortunately his > regular dentist has just retired and the one replacing him is not looking like > one we will be keeping. > > > any advice would be appreciated, > > valarie > mom to 3 w/cvid > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Do it now. Macey has had two dental surgeries that required general anesthesia and stays because of her mouth structure. We've easily spent over $7000 out of pocket. Last surgery was at 15 but she has another one next year to finish things up. Ursula Macey. 16-CVID On May 16, 2011, at 9:31 AM, Kim MacEachern <kimmaceachern@...> wrote: > > We have the same problem. Because of 's immune deficiency his bone growth is retarded - so his upper jaw is substantially smaller than his lower jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now starting down the path of braces, head gear, etc. at age 9 and at an estimated cost of $10,000. Our insurance will only cover $3000. > > The hospital for Sick Children was recommending that we wait until is 16 and then have his jaw surgically fixed. This would be covered by our provincial medical plan, but far more invasive and it will take a long time to heal. AND it doesn't mean that we won't still have to get him braces. > > I have tried to find coverage for the extra money that the braces head gear plan will cost us, but so far I haven't had much luck. It is unfortunate that the better treatment is not covered - but the painful invasive and more risky treatment would be free. There should be special funding for dental complications from a chronic disease - but I have yet to find it. > > I will appeal to our benefit plan with doctor and orthodontist letters, but chances are not good. I have asked our Immunology Department to research other funding options for us - maybe the IDF has some ideas ? > > Good luck ! > > Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) > > > > > > From: osdbmom@... > Date: Fri, 13 May 2011 20:05:49 +0000 > Subject: Dental problems > > > > > > > I have some questions about possible dental problems that might be associated with CVID. > Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am curious to see if other kids with cvid might have similar issues. We have been rec'd to see an orthodontist, and Ive just gotten off the phone with the insurance who are telling me they will only cover orthodontist if it can be proven to be related to CVID, or a genetic disease of some kind. > Some of the problems he has are: frequent cavities, despite good and regular dental care....he goes every six months for a cleaning, I always take him right in for fillings, etc. Often, when his baby teeth fall out, they are crumbly and soft. He keeps having tooth abcesses, and they dont clear up....I take him in immediately, the dentist will drill and drain it, and start him right on abx, and it will just keep getting worse or coming back. > Right now, probably the biggest problems he's got is that bc of his health problems, he is still and has been for years, failure to thrive and his bone age is about 2 or so years behind, so he has the jaw size of a very small 6-7 year old, and the teeth of a 9 year old coming in, there is no room, he's got teeth coming in the wrong places, or coming in sideways, and in some areas where we had to put a space maintainer in (bc we had to pull the abscessed tooth) the tooth above it is coming in, but coming into the wrong spot and going the wrong way, so there is some quandry about whether it would be best to take the space maintainers out, and let those big teeth come in in the wrong spot, or leave them in and hold the sideways adult teeth in his gums until there is more room. It is extremely likely he will need braces at some point, and they would like to get a plan going now. > I am taking him in to his pcp soon for a well child check and I wanted to ask about the possibility of a vitamin D/ calcium deficiency, I am curious if that is what causes his teeth to be so bad. > I will need a dentist and an orthodontist to write letters on his behalf stating the reason for the state of his teeth for the insurance, unfortunately his regular dentist has just retired and the one replacing him is not looking like one we will be keeping. > > any advice would be appreciated, > > valarie > mom to 3 w/cvid > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Do it now. Macey has had two dental surgeries that required general anesthesia and stays because of her mouth structure. We've easily spent over $7000 out of pocket. Last surgery was at 15 but she has another one next year to finish things up. Ursula Macey. 16-CVID On May 16, 2011, at 9:31 AM, Kim MacEachern <kimmaceachern@...> wrote: > > We have the same problem. Because of 's immune deficiency his bone growth is retarded - so his upper jaw is substantially smaller than his lower jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now starting down the path of braces, head gear, etc. at age 9 and at an estimated cost of $10,000. Our insurance will only cover $3000. > > The hospital for Sick Children was recommending that we wait until is 16 and then have his jaw surgically fixed. This would be covered by our provincial medical plan, but far more invasive and it will take a long time to heal. AND it doesn't mean that we won't still have to get him braces. > > I have tried to find coverage for the extra money that the braces head gear plan will cost us, but so far I haven't had much luck. It is unfortunate that the better treatment is not covered - but the painful invasive and more risky treatment would be free. There should be special funding for dental complications from a chronic disease - but I have yet to find it. > > I will appeal to our benefit plan with doctor and orthodontist letters, but chances are not good. I have asked our Immunology Department to research other funding options for us - maybe the IDF has some ideas ? > > Good luck ! > > Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) > > > > > > From: osdbmom@... > Date: Fri, 13 May 2011 20:05:49 +0000 > Subject: Dental problems > > > > > > > I have some questions about possible dental problems that might be associated with CVID. > Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am curious to see if other kids with cvid might have similar issues. We have been rec'd to see an orthodontist, and Ive just gotten off the phone with the insurance who are telling me they will only cover orthodontist if it can be proven to be related to CVID, or a genetic disease of some kind. > Some of the problems he has are: frequent cavities, despite good and regular dental care....he goes every six months for a cleaning, I always take him right in for fillings, etc. Often, when his baby teeth fall out, they are crumbly and soft. He keeps having tooth abcesses, and they dont clear up....I take him in immediately, the dentist will drill and drain it, and start him right on abx, and it will just keep getting worse or coming back. > Right now, probably the biggest problems he's got is that bc of his health problems, he is still and has been for years, failure to thrive and his bone age is about 2 or so years behind, so he has the jaw size of a very small 6-7 year old, and the teeth of a 9 year old coming in, there is no room, he's got teeth coming in the wrong places, or coming in sideways, and in some areas where we had to put a space maintainer in (bc we had to pull the abscessed tooth) the tooth above it is coming in, but coming into the wrong spot and going the wrong way, so there is some quandry about whether it would be best to take the space maintainers out, and let those big teeth come in in the wrong spot, or leave them in and hold the sideways adult teeth in his gums until there is more room. It is extremely likely he will need braces at some point, and they would like to get a plan going now. > I am taking him in to his pcp soon for a well child check and I wanted to ask about the possibility of a vitamin D/ calcium deficiency, I am curious if that is what causes his teeth to be so bad. > I will need a dentist and an orthodontist to write letters on his behalf stating the reason for the state of his teeth for the insurance, unfortunately his regular dentist has just retired and the one replacing him is not looking like one we will be keeping. > > any advice would be appreciated, > > valarie > mom to 3 w/cvid > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Macey also has a high palate. Ursula On May 16, 2011, at 12:03 PM, " osdbmom " <osdbmom@...> wrote: > thats a shame, Barbie, he has been through so much:( > > Brennan doesnt have really cosmetic problems that others can see....yet. I would like to keep it that way. > > I worry that with as bad as his baby teeth have been...the cavities,abscesses, and crumbling soft teeth his adult teeth will have the same trouble. And then of course he is so little, and thos adult teeth are coming in and there is no room. So now he has adult teeth coming in through his gums, up near the top, sideways and shoving other teeth in the wrong directions, its a mess. > > Im havng a hard time right now...our regular dentist retired and the new dentist refuses to let Brennan use laughing gas....I took him last week, not knowing this, and after my kid spent all day with an IV in his arm for IG, went to the dentist and he rubbed a little numbing gel on his gum and left it maybe 30 seconds and then gave him two shots!! I asked him to wait, I told him our former dentist always used laughing gas and he said " oh, he'll be fine " and did it anyway. Of course since I didnt know, Brennan wasnt prepared and it really hurt him....now he is scared of the dentist and supposed to go back this week for mroe fillings, but Im thinking of cancelling that and trying to find a dentist to take him on who will use laughing gas. Gosh, he's only 9!! and looking ahead to all the dental work he will need, I dont want him to be traumatized and scared to go. > > It seems like there is always more to worry about with these kids. > > valarie > mom to 3 w/cvid > > > > > > My son too has SEVERE overbite. We were told it was due to his severe sinus > > disease as an infant and young child. He had to open an airway to be able to > > breathe so his arch heightened probably with is tongue. He started in WA state > > at age of 8 with headgear and then we had to move cross country. In Oklahoma > > the state helped with braces so once he got his anxiety under control ( ran out > > of building and hid under my car when they came at him with a glue syringe) > > and a BETTER orthodontist we got them on. . A VERY long and expensive process. > > He has now been in braces for another year that I am paying for out of pocket. > > He has also had pretty severe gum disease that needs surgery but it will be > > $1000 to remove a piece of skin that has overgrown and the state dental > > insurance does not pay for it. So this has been a long 7 year process. I have > > been told that he will also need jaw surgery when he gets older but doubt I will > > move there for him. The BIGGEST problem has been the ABUSE and BULLYING he > > endured in 3rd and 4th grade about his overbite. The day he got on his braces > > was the day that he began to smile again. He use to cover his teeth with his > > upper lip and hold tight to try to deal with the overbite. It broke my heart. I > > had NO idea that there was a possibility to get it paid for through insurance. > > BARBIE > > > > > > > > > > > > ________________________________ > > From: Kim MacEachern <kimmaceachern@...> > > Group < > > > Sent: Mon, May 16, 2011 6:31:15 AM > > Subject: RE: Dental problems > > > > > > We have the same problem. Because of 's immune deficiency his bone > > growth is retarded - so his upper jaw is substantially smaller than his lower > > jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now > > starting down the path of braces, head gear, etc. at age 9 and at an estimated > > cost of $10,000. Our insurance will only cover $3000. > > > > The hospital for Sick Children was recommending that we wait until is 16 > > and then have his jaw surgically fixed. This would be covered by our provincial > > medical plan, but far more invasive and it will take a long time to heal. AND > > it doesn't mean that we won't still have to get him braces. > > > > I have tried to find coverage for the extra money that the braces head gear plan > > will cost us, but so far I haven't had much luck. It is unfortunate that the > > better treatment is not covered - but the painful invasive and more risky > > treatment would be free. There should be special funding for dental > > complications from a chronic disease - but I have yet to find it. > > > > I will appeal to our benefit plan with doctor and orthodontist letters, but > > chances are not good. I have asked our Immunology Department to research other > > funding options for us - maybe the IDF has some ideas ? > > > > Good luck ! > > > > Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) > > > > > > > > > > > > From: osdbmom@... > > Date: Fri, 13 May 2011 20:05:49 +0000 > > Subject: Dental problems > > > > > > > > > > > > > > I have some questions about possible dental problems that might be associated > > with CVID. > > Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am > > curious to see if other kids with cvid might have similar issues. We have been > > rec'd to see an orthodontist, and Ive just gotten off the phone with the > > insurance who are telling me they will only cover orthodontist if it can be > > proven to be related to CVID, or a genetic disease of some kind. > > Some of the problems he has are: frequent cavities, despite good and regular > > dental care....he goes every six months for a cleaning, I always take him right > > in for fillings, etc. Often, when his baby teeth fall out, they are crumbly and > > soft. He keeps having tooth abcesses, and they dont clear up....I take him in > > immediately, the dentist will drill and drain it, and start him right on abx, > > and it will just keep getting worse or coming back. > > > > Right now, probably the biggest problems he's got is that bc of his health > > problems, he is still and has been for years, failure to thrive and his bone age > > is about 2 or so years behind, so he has the jaw size of a very small 6-7 year > > old, and the teeth of a 9 year old coming in, there is no room, he's got teeth > > coming in the wrong places, or coming in sideways, and in some areas where we > > had to put a space maintainer in (bc we had to pull the abscessed tooth) the > > tooth above it is coming in, but coming into the wrong spot and going the wrong > > way, so there is some quandry about whether it would be best to take the space > > maintainers out, and let those big teeth come in in the wrong spot, or leave > > them in and hold the sideways adult teeth in his gums until there is more room. > > It is extremely likely he will need braces at some point, and they would like to > > get a plan going now. > > I am taking him in to his pcp soon for a well child check and I wanted to ask > > about the possibility of a vitamin D/ calcium deficiency, I am curious if that > > is what causes his teeth to be so bad. > > > > I will need a dentist and an orthodontist to write letters on his behalf stating > > the reason for the state of his teeth for the insurance, unfortunately his > > regular dentist has just retired and the one replacing him is not looking like > > one we will be keeping. > > > > > > any advice would be appreciated, > > > > valarie > > mom to 3 w/cvid > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Macey also has a high palate. Ursula On May 16, 2011, at 12:03 PM, " osdbmom " <osdbmom@...> wrote: > thats a shame, Barbie, he has been through so much:( > > Brennan doesnt have really cosmetic problems that others can see....yet. I would like to keep it that way. > > I worry that with as bad as his baby teeth have been...the cavities,abscesses, and crumbling soft teeth his adult teeth will have the same trouble. And then of course he is so little, and thos adult teeth are coming in and there is no room. So now he has adult teeth coming in through his gums, up near the top, sideways and shoving other teeth in the wrong directions, its a mess. > > Im havng a hard time right now...our regular dentist retired and the new dentist refuses to let Brennan use laughing gas....I took him last week, not knowing this, and after my kid spent all day with an IV in his arm for IG, went to the dentist and he rubbed a little numbing gel on his gum and left it maybe 30 seconds and then gave him two shots!! I asked him to wait, I told him our former dentist always used laughing gas and he said " oh, he'll be fine " and did it anyway. Of course since I didnt know, Brennan wasnt prepared and it really hurt him....now he is scared of the dentist and supposed to go back this week for mroe fillings, but Im thinking of cancelling that and trying to find a dentist to take him on who will use laughing gas. Gosh, he's only 9!! and looking ahead to all the dental work he will need, I dont want him to be traumatized and scared to go. > > It seems like there is always more to worry about with these kids. > > valarie > mom to 3 w/cvid > > > > > > My son too has SEVERE overbite. We were told it was due to his severe sinus > > disease as an infant and young child. He had to open an airway to be able to > > breathe so his arch heightened probably with is tongue. He started in WA state > > at age of 8 with headgear and then we had to move cross country. In Oklahoma > > the state helped with braces so once he got his anxiety under control ( ran out > > of building and hid under my car when they came at him with a glue syringe) > > and a BETTER orthodontist we got them on. . A VERY long and expensive process. > > He has now been in braces for another year that I am paying for out of pocket. > > He has also had pretty severe gum disease that needs surgery but it will be > > $1000 to remove a piece of skin that has overgrown and the state dental > > insurance does not pay for it. So this has been a long 7 year process. I have > > been told that he will also need jaw surgery when he gets older but doubt I will > > move there for him. The BIGGEST problem has been the ABUSE and BULLYING he > > endured in 3rd and 4th grade about his overbite. The day he got on his braces > > was the day that he began to smile again. He use to cover his teeth with his > > upper lip and hold tight to try to deal with the overbite. It broke my heart. I > > had NO idea that there was a possibility to get it paid for through insurance. > > BARBIE > > > > > > > > > > > > ________________________________ > > From: Kim MacEachern <kimmaceachern@...> > > Group < > > > Sent: Mon, May 16, 2011 6:31:15 AM > > Subject: RE: Dental problems > > > > > > We have the same problem. Because of 's immune deficiency his bone > > growth is retarded - so his upper jaw is substantially smaller than his lower > > jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now > > starting down the path of braces, head gear, etc. at age 9 and at an estimated > > cost of $10,000. Our insurance will only cover $3000. > > > > The hospital for Sick Children was recommending that we wait until is 16 > > and then have his jaw surgically fixed. This would be covered by our provincial > > medical plan, but far more invasive and it will take a long time to heal. AND > > it doesn't mean that we won't still have to get him braces. > > > > I have tried to find coverage for the extra money that the braces head gear plan > > will cost us, but so far I haven't had much luck. It is unfortunate that the > > better treatment is not covered - but the painful invasive and more risky > > treatment would be free. There should be special funding for dental > > complications from a chronic disease - but I have yet to find it. > > > > I will appeal to our benefit plan with doctor and orthodontist letters, but > > chances are not good. I have asked our Immunology Department to research other > > funding options for us - maybe the IDF has some ideas ? > > > > Good luck ! > > > > Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) > > > > > > > > > > > > From: osdbmom@... > > Date: Fri, 13 May 2011 20:05:49 +0000 > > Subject: Dental problems > > > > > > > > > > > > > > I have some questions about possible dental problems that might be associated > > with CVID. > > Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am > > curious to see if other kids with cvid might have similar issues. We have been > > rec'd to see an orthodontist, and Ive just gotten off the phone with the > > insurance who are telling me they will only cover orthodontist if it can be > > proven to be related to CVID, or a genetic disease of some kind. > > Some of the problems he has are: frequent cavities, despite good and regular > > dental care....he goes every six months for a cleaning, I always take him right > > in for fillings, etc. Often, when his baby teeth fall out, they are crumbly and > > soft. He keeps having tooth abcesses, and they dont clear up....I take him in > > immediately, the dentist will drill and drain it, and start him right on abx, > > and it will just keep getting worse or coming back. > > > > Right now, probably the biggest problems he's got is that bc of his health > > problems, he is still and has been for years, failure to thrive and his bone age > > is about 2 or so years behind, so he has the jaw size of a very small 6-7 year > > old, and the teeth of a 9 year old coming in, there is no room, he's got teeth > > coming in the wrong places, or coming in sideways, and in some areas where we > > had to put a space maintainer in (bc we had to pull the abscessed tooth) the > > tooth above it is coming in, but coming into the wrong spot and going the wrong > > way, so there is some quandry about whether it would be best to take the space > > maintainers out, and let those big teeth come in in the wrong spot, or leave > > them in and hold the sideways adult teeth in his gums until there is more room. > > It is extremely likely he will need braces at some point, and they would like to > > get a plan going now. > > I am taking him in to his pcp soon for a well child check and I wanted to ask > > about the possibility of a vitamin D/ calcium deficiency, I am curious if that > > is what causes his teeth to be so bad. > > > > I will need a dentist and an orthodontist to write letters on his behalf stating > > the reason for the state of his teeth for the insurance, unfortunately his > > regular dentist has just retired and the one replacing him is not looking like > > one we will be keeping. > > > > > > any advice would be appreciated, > > > > valarie > > mom to 3 w/cvid > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 My son just handled it for awhile too at your sons age and then as I said we went to the ortho at 13 and I had prepared him for everything and took him to the back. (there was no where for me to sit so I said asked him if he wanted me to stay and he said he was OK> I was sitting in the waiting room and he RAN out the door past me and hid under my car. He was there for over 20 min. I had someone stay with him and went back in to ask what had happened? the girl said she took out a glue filled peridontal syringe and he took off. She STUPIDLY did not talk to him about it ( as I had IMPLORED them to do) This is a kid that had IVIg from 3 til so he KNEW needles. It took another year and counseling to get his braces on. OH he also had to 2 teeth pulled surgically and another sinus surgery the week before so I GET IT! These kids do have a hard time " catching a break " BARBIE ________________________________ From: osdbmom <osdbmom@...> Sent: Mon, May 16, 2011 9:03:38 AM Subject: Re: Dental problems thats a shame, Barbie, he has been through so much:( Brennan doesnt have really cosmetic problems that others can see....yet. I would like to keep it that way. I worry that with as bad as his baby teeth have been...the cavities,abscesses, and crumbling soft teeth his adult teeth will have the same trouble. And then of course he is so little, and thos adult teeth are coming in and there is no room. So now he has adult teeth coming in through his gums, up near the top, sideways and shoving other teeth in the wrong directions, its a mess. Im havng a hard time right now...our regular dentist retired and the new dentist refuses to let Brennan use laughing gas....I took him last week, not knowing this, and after my kid spent all day with an IV in his arm for IG, went to the dentist and he rubbed a little numbing gel on his gum and left it maybe 30 seconds and then gave him two shots!! I asked him to wait, I told him our former dentist always used laughing gas and he said " oh, he'll be fine " and did it anyway. Of course since I didnt know, Brennan wasnt prepared and it really hurt him....now he is scared of the dentist and supposed to go back this week for mroe fillings, but Im thinking of cancelling that and trying to find a dentist to take him on who will use laughing gas. Gosh, he's only 9!! and looking ahead to all the dental work he will need, I dont want him to be traumatized and scared to go. It seems like there is always more to worry about with these kids. valarie mom to 3 w/cvid > > My son too has SEVERE overbite. We were told it was due to his severe sinus > disease as an infant and young child. He had to open an airway to be able to > breathe so his arch heightened probably with is tongue. He started in WA state > > at age of 8 with headgear and then we had to move cross country. In Oklahoma > the state helped with braces so once he got his anxiety under control ( ran out > > of building and hid under my car when they came at him with a glue syringe) > and a BETTER orthodontist we got them on. . A VERY long and expensive process. > He has now been in braces for another year that I am paying for out of pocket. > He has also had pretty severe gum disease that needs surgery but it will be > $1000 to remove a piece of skin that has overgrown and the state dental > insurance does not pay for it. So this has been a long 7 year process. I have > been told that he will also need jaw surgery when he gets older but doubt I >will > > move there for him. The BIGGEST problem has been the ABUSE and BULLYING he > endured in 3rd and 4th grade about his overbite. The day he got on his braces > was the day that he began to smile again. He use to cover his teeth with his > upper lip and hold tight to try to deal with the overbite. It broke my heart. >I > > had NO idea that there was a possibility to get it paid for through insurance. > BARBIE > > > > > > ________________________________ > From: Kim MacEachern <kimmaceachern@...> > Group < > > Sent: Mon, May 16, 2011 6:31:15 AM > Subject: RE: Dental problems > > > We have the same problem. Because of 's immune deficiency his bone > growth is retarded - so his upper jaw is substantially smaller than his lower > jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now > starting down the path of braces, head gear, etc. at age 9 and at an estimated > cost of $10,000. Our insurance will only cover $3000. > > The hospital for Sick Children was recommending that we wait until is >16 > > and then have his jaw surgically fixed. This would be covered by our >provincial > > medical plan, but far more invasive and it will take a long time to heal. AND > it doesn't mean that we won't still have to get him braces. > > I have tried to find coverage for the extra money that the braces head gear >plan > > will cost us, but so far I haven't had much luck. It is unfortunate that the > better treatment is not covered - but the painful invasive and more risky > treatment would be free. There should be special funding for dental > complications from a chronic disease - but I have yet to find it. > > I will appeal to our benefit plan with doctor and orthodontist letters, but > chances are not good. I have asked our Immunology Department to research other > > funding options for us - maybe the IDF has some ideas ? > > Good luck ! > > Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) > > > > > > From: osdbmom@... > Date: Fri, 13 May 2011 20:05:49 +0000 > Subject: Dental problems > > > > > > > I have some questions about possible dental problems that might be associated > with CVID. > Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am > curious to see if other kids with cvid might have similar issues. We have been > rec'd to see an orthodontist, and Ive just gotten off the phone with the > insurance who are telling me they will only cover orthodontist if it can be > proven to be related to CVID, or a genetic disease of some kind. > Some of the problems he has are: frequent cavities, despite good and regular > dental care....he goes every six months for a cleaning, I always take him right > > in for fillings, etc. Often, when his baby teeth fall out, they are crumbly and > > soft. He keeps having tooth abcesses, and they dont clear up....I take him in > immediately, the dentist will drill and drain it, and start him right on abx, > and it will just keep getting worse or coming back. > > Right now, probably the biggest problems he's got is that bc of his health > problems, he is still and has been for years, failure to thrive and his bone >age > > is about 2 or so years behind, so he has the jaw size of a very small 6-7 year > old, and the teeth of a 9 year old coming in, there is no room, he's got teeth > coming in the wrong places, or coming in sideways, and in some areas where we > had to put a space maintainer in (bc we had to pull the abscessed tooth) the > tooth above it is coming in, but coming into the wrong spot and going the wrong > > way, so there is some quandry about whether it would be best to take the space > maintainers out, and let those big teeth come in in the wrong spot, or leave > them in and hold the sideways adult teeth in his gums until there is more room. > > It is extremely likely he will need braces at some point, and they would like >to > > get a plan going now. > I am taking him in to his pcp soon for a well child check and I wanted to ask > about the possibility of a vitamin D/ calcium deficiency, I am curious if that > is what causes his teeth to be so bad. > > I will need a dentist and an orthodontist to write letters on his behalf >stating > > the reason for the state of his teeth for the insurance, unfortunately his > regular dentist has just retired and the one replacing him is not looking like > one we will be keeping. > > > any advice would be appreciated, > > valarie > mom to 3 w/cvid > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 My son just handled it for awhile too at your sons age and then as I said we went to the ortho at 13 and I had prepared him for everything and took him to the back. (there was no where for me to sit so I said asked him if he wanted me to stay and he said he was OK> I was sitting in the waiting room and he RAN out the door past me and hid under my car. He was there for over 20 min. I had someone stay with him and went back in to ask what had happened? the girl said she took out a glue filled peridontal syringe and he took off. She STUPIDLY did not talk to him about it ( as I had IMPLORED them to do) This is a kid that had IVIg from 3 til so he KNEW needles. It took another year and counseling to get his braces on. OH he also had to 2 teeth pulled surgically and another sinus surgery the week before so I GET IT! These kids do have a hard time " catching a break " BARBIE ________________________________ From: osdbmom <osdbmom@...> Sent: Mon, May 16, 2011 9:03:38 AM Subject: Re: Dental problems thats a shame, Barbie, he has been through so much:( Brennan doesnt have really cosmetic problems that others can see....yet. I would like to keep it that way. I worry that with as bad as his baby teeth have been...the cavities,abscesses, and crumbling soft teeth his adult teeth will have the same trouble. And then of course he is so little, and thos adult teeth are coming in and there is no room. So now he has adult teeth coming in through his gums, up near the top, sideways and shoving other teeth in the wrong directions, its a mess. Im havng a hard time right now...our regular dentist retired and the new dentist refuses to let Brennan use laughing gas....I took him last week, not knowing this, and after my kid spent all day with an IV in his arm for IG, went to the dentist and he rubbed a little numbing gel on his gum and left it maybe 30 seconds and then gave him two shots!! I asked him to wait, I told him our former dentist always used laughing gas and he said " oh, he'll be fine " and did it anyway. Of course since I didnt know, Brennan wasnt prepared and it really hurt him....now he is scared of the dentist and supposed to go back this week for mroe fillings, but Im thinking of cancelling that and trying to find a dentist to take him on who will use laughing gas. Gosh, he's only 9!! and looking ahead to all the dental work he will need, I dont want him to be traumatized and scared to go. It seems like there is always more to worry about with these kids. valarie mom to 3 w/cvid > > My son too has SEVERE overbite. We were told it was due to his severe sinus > disease as an infant and young child. He had to open an airway to be able to > breathe so his arch heightened probably with is tongue. He started in WA state > > at age of 8 with headgear and then we had to move cross country. In Oklahoma > the state helped with braces so once he got his anxiety under control ( ran out > > of building and hid under my car when they came at him with a glue syringe) > and a BETTER orthodontist we got them on. . A VERY long and expensive process. > He has now been in braces for another year that I am paying for out of pocket. > He has also had pretty severe gum disease that needs surgery but it will be > $1000 to remove a piece of skin that has overgrown and the state dental > insurance does not pay for it. So this has been a long 7 year process. I have > been told that he will also need jaw surgery when he gets older but doubt I >will > > move there for him. The BIGGEST problem has been the ABUSE and BULLYING he > endured in 3rd and 4th grade about his overbite. The day he got on his braces > was the day that he began to smile again. He use to cover his teeth with his > upper lip and hold tight to try to deal with the overbite. It broke my heart. >I > > had NO idea that there was a possibility to get it paid for through insurance. > BARBIE > > > > > > ________________________________ > From: Kim MacEachern <kimmaceachern@...> > Group < > > Sent: Mon, May 16, 2011 6:31:15 AM > Subject: RE: Dental problems > > > We have the same problem. Because of 's immune deficiency his bone > growth is retarded - so his upper jaw is substantially smaller than his lower > jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now > starting down the path of braces, head gear, etc. at age 9 and at an estimated > cost of $10,000. Our insurance will only cover $3000. > > The hospital for Sick Children was recommending that we wait until is >16 > > and then have his jaw surgically fixed. This would be covered by our >provincial > > medical plan, but far more invasive and it will take a long time to heal. AND > it doesn't mean that we won't still have to get him braces. > > I have tried to find coverage for the extra money that the braces head gear >plan > > will cost us, but so far I haven't had much luck. It is unfortunate that the > better treatment is not covered - but the painful invasive and more risky > treatment would be free. There should be special funding for dental > complications from a chronic disease - but I have yet to find it. > > I will appeal to our benefit plan with doctor and orthodontist letters, but > chances are not good. I have asked our Immunology Department to research other > > funding options for us - maybe the IDF has some ideas ? > > Good luck ! > > Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) > > > > > > From: osdbmom@... > Date: Fri, 13 May 2011 20:05:49 +0000 > Subject: Dental problems > > > > > > > I have some questions about possible dental problems that might be associated > with CVID. > Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am > curious to see if other kids with cvid might have similar issues. We have been > rec'd to see an orthodontist, and Ive just gotten off the phone with the > insurance who are telling me they will only cover orthodontist if it can be > proven to be related to CVID, or a genetic disease of some kind. > Some of the problems he has are: frequent cavities, despite good and regular > dental care....he goes every six months for a cleaning, I always take him right > > in for fillings, etc. Often, when his baby teeth fall out, they are crumbly and > > soft. He keeps having tooth abcesses, and they dont clear up....I take him in > immediately, the dentist will drill and drain it, and start him right on abx, > and it will just keep getting worse or coming back. > > Right now, probably the biggest problems he's got is that bc of his health > problems, he is still and has been for years, failure to thrive and his bone >age > > is about 2 or so years behind, so he has the jaw size of a very small 6-7 year > old, and the teeth of a 9 year old coming in, there is no room, he's got teeth > coming in the wrong places, or coming in sideways, and in some areas where we > had to put a space maintainer in (bc we had to pull the abscessed tooth) the > tooth above it is coming in, but coming into the wrong spot and going the wrong > > way, so there is some quandry about whether it would be best to take the space > maintainers out, and let those big teeth come in in the wrong spot, or leave > them in and hold the sideways adult teeth in his gums until there is more room. > > It is extremely likely he will need braces at some point, and they would like >to > > get a plan going now. > I am taking him in to his pcp soon for a well child check and I wanted to ask > about the possibility of a vitamin D/ calcium deficiency, I am curious if that > is what causes his teeth to be so bad. > > I will need a dentist and an orthodontist to write letters on his behalf >stating > > the reason for the state of his teeth for the insurance, unfortunately his > regular dentist has just retired and the one replacing him is not looking like > one we will be keeping. > > > any advice would be appreciated, > > valarie > mom to 3 w/cvid > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 HMMMM I have not pushed for the surgery due to his problems with procedures not sure what the long term ramifications are to NOT doing it. BARBIE ________________________________ From: Ursula Holleman <uahollem@...> " " < > Sent: Mon, May 16, 2011 9:09:00 AM Subject: Re: Re: Dental problems Macey also has a high palate. Ursula On May 16, 2011, at 12:03 PM, " osdbmom " <osdbmom@...> wrote: > thats a shame, Barbie, he has been through so much:( > > Brennan doesnt have really cosmetic problems that others can see....yet. I >would like to keep it that way. > > > I worry that with as bad as his baby teeth have been...the cavities,abscesses, >and crumbling soft teeth his adult teeth will have the same trouble. And then of >course he is so little, and thos adult teeth are coming in and there is no room. >So now he has adult teeth coming in through his gums, up near the top, sideways >and shoving other teeth in the wrong directions, its a mess. > > Im havng a hard time right now...our regular dentist retired and the new >dentist refuses to let Brennan use laughing gas....I took him last week, not >knowing this, and after my kid spent all day with an IV in his arm for IG, went >to the dentist and he rubbed a little numbing gel on his gum and left it maybe >30 seconds and then gave him two shots!! I asked him to wait, I told him our >former dentist always used laughing gas and he said " oh, he'll be fine " and did >it anyway. Of course since I didnt know, Brennan wasnt prepared and it really >hurt him....now he is scared of the dentist and supposed to go back this week >for mroe fillings, but Im thinking of cancelling that and trying to find a >dentist to take him on who will use laughing gas. Gosh, he's only 9!! and >looking ahead to all the dental work he will need, I dont want him to be >traumatized and scared to go. > > It seems like there is always more to worry about with these kids. > > valarie > mom to 3 w/cvid > > > > > > My son too has SEVERE overbite. We were told it was due to his severe sinus > > disease as an infant and young child. He had to open an airway to be able to > > breathe so his arch heightened probably with is tongue. He started in WA >state > > > at age of 8 with headgear and then we had to move cross country. In Oklahoma > > the state helped with braces so once he got his anxiety under control ( ran >out > > > of building and hid under my car when they came at him with a glue syringe) > > and a BETTER orthodontist we got them on. . A VERY long and expensive >process. > > > He has now been in braces for another year that I am paying for out of >pocket. > > > He has also had pretty severe gum disease that needs surgery but it will be > > $1000 to remove a piece of skin that has overgrown and the state dental > > insurance does not pay for it. So this has been a long 7 year process. I have > > > been told that he will also need jaw surgery when he gets older but doubt I >will > > > move there for him. The BIGGEST problem has been the ABUSE and BULLYING he > > endured in 3rd and 4th grade about his overbite. The day he got on his braces > > > was the day that he began to smile again. He use to cover his teeth with his > > upper lip and hold tight to try to deal with the overbite. It broke my heart. >I > > > had NO idea that there was a possibility to get it paid for through >insurance. > > BARBIE > > > > > > > > > > > > ________________________________ > > From: Kim MacEachern <kimmaceachern@...> > > Group < > > > Sent: Mon, May 16, 2011 6:31:15 AM > > Subject: RE: Dental problems > > > > > > We have the same problem. Because of 's immune deficiency his bone > > growth is retarded - so his upper jaw is substantially smaller than his lower > > > jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now > > > starting down the path of braces, head gear, etc. at age 9 and at an >estimated > > > cost of $10,000. Our insurance will only cover $3000. > > > > The hospital for Sick Children was recommending that we wait until is >16 > > > and then have his jaw surgically fixed. This would be covered by our >provincial > > > medical plan, but far more invasive and it will take a long time to heal. AND > > > it doesn't mean that we won't still have to get him braces. > > > > I have tried to find coverage for the extra money that the braces head gear >plan > > > will cost us, but so far I haven't had much luck. It is unfortunate that the > > better treatment is not covered - but the painful invasive and more risky > > treatment would be free. There should be special funding for dental > > complications from a chronic disease - but I have yet to find it. > > > > I will appeal to our benefit plan with doctor and orthodontist letters, but > > chances are not good. I have asked our Immunology Department to research >other > > > funding options for us - maybe the IDF has some ideas ? > > > > Good luck ! > > > > Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) > > > > > > > > > > > > From: osdbmom@... > > Date: Fri, 13 May 2011 20:05:49 +0000 > > Subject: Dental problems > > > > > > > > > > > > > > I have some questions about possible dental problems that might be associated > > > with CVID. > > Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am > > curious to see if other kids with cvid might have similar issues. We have >been > > > rec'd to see an orthodontist, and Ive just gotten off the phone with the > > insurance who are telling me they will only cover orthodontist if it can be > > proven to be related to CVID, or a genetic disease of some kind. > > Some of the problems he has are: frequent cavities, despite good and regular > > dental care....he goes every six months for a cleaning, I always take him >right > > > in for fillings, etc. Often, when his baby teeth fall out, they are crumbly >and > > > soft. He keeps having tooth abcesses, and they dont clear up....I take him in > > > immediately, the dentist will drill and drain it, and start him right on abx, > > > and it will just keep getting worse or coming back. > > > > Right now, probably the biggest problems he's got is that bc of his health > > problems, he is still and has been for years, failure to thrive and his bone >age > > > is about 2 or so years behind, so he has the jaw size of a very small 6-7 >year > > > old, and the teeth of a 9 year old coming in, there is no room, he's got >teeth > > > coming in the wrong places, or coming in sideways, and in some areas where we > > > had to put a space maintainer in (bc we had to pull the abscessed tooth) the > > tooth above it is coming in, but coming into the wrong spot and going the >wrong > > > way, so there is some quandry about whether it would be best to take the >space > > > maintainers out, and let those big teeth come in in the wrong spot, or leave > > them in and hold the sideways adult teeth in his gums until there is more >room. > > > It is extremely likely he will need braces at some point, and they would like >to > > > get a plan going now. > > I am taking him in to his pcp soon for a well child check and I wanted to ask > > > about the possibility of a vitamin D/ calcium deficiency, I am curious if >that > > > is what causes his teeth to be so bad. > > > > I will need a dentist and an orthodontist to write letters on his behalf >stating > > > the reason for the state of his teeth for the insurance, unfortunately his > > regular dentist has just retired and the one replacing him is not looking >like > > > one we will be keeping. > > > > > > any advice would be appreciated, > > > > valarie > > mom to 3 w/cvid > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 HMMMM I have not pushed for the surgery due to his problems with procedures not sure what the long term ramifications are to NOT doing it. BARBIE ________________________________ From: Ursula Holleman <uahollem@...> " " < > Sent: Mon, May 16, 2011 9:09:00 AM Subject: Re: Re: Dental problems Macey also has a high palate. Ursula On May 16, 2011, at 12:03 PM, " osdbmom " <osdbmom@...> wrote: > thats a shame, Barbie, he has been through so much:( > > Brennan doesnt have really cosmetic problems that others can see....yet. I >would like to keep it that way. > > > I worry that with as bad as his baby teeth have been...the cavities,abscesses, >and crumbling soft teeth his adult teeth will have the same trouble. And then of >course he is so little, and thos adult teeth are coming in and there is no room. >So now he has adult teeth coming in through his gums, up near the top, sideways >and shoving other teeth in the wrong directions, its a mess. > > Im havng a hard time right now...our regular dentist retired and the new >dentist refuses to let Brennan use laughing gas....I took him last week, not >knowing this, and after my kid spent all day with an IV in his arm for IG, went >to the dentist and he rubbed a little numbing gel on his gum and left it maybe >30 seconds and then gave him two shots!! I asked him to wait, I told him our >former dentist always used laughing gas and he said " oh, he'll be fine " and did >it anyway. Of course since I didnt know, Brennan wasnt prepared and it really >hurt him....now he is scared of the dentist and supposed to go back this week >for mroe fillings, but Im thinking of cancelling that and trying to find a >dentist to take him on who will use laughing gas. Gosh, he's only 9!! and >looking ahead to all the dental work he will need, I dont want him to be >traumatized and scared to go. > > It seems like there is always more to worry about with these kids. > > valarie > mom to 3 w/cvid > > > > > > My son too has SEVERE overbite. We were told it was due to his severe sinus > > disease as an infant and young child. He had to open an airway to be able to > > breathe so his arch heightened probably with is tongue. He started in WA >state > > > at age of 8 with headgear and then we had to move cross country. In Oklahoma > > the state helped with braces so once he got his anxiety under control ( ran >out > > > of building and hid under my car when they came at him with a glue syringe) > > and a BETTER orthodontist we got them on. . A VERY long and expensive >process. > > > He has now been in braces for another year that I am paying for out of >pocket. > > > He has also had pretty severe gum disease that needs surgery but it will be > > $1000 to remove a piece of skin that has overgrown and the state dental > > insurance does not pay for it. So this has been a long 7 year process. I have > > > been told that he will also need jaw surgery when he gets older but doubt I >will > > > move there for him. The BIGGEST problem has been the ABUSE and BULLYING he > > endured in 3rd and 4th grade about his overbite. The day he got on his braces > > > was the day that he began to smile again. He use to cover his teeth with his > > upper lip and hold tight to try to deal with the overbite. It broke my heart. >I > > > had NO idea that there was a possibility to get it paid for through >insurance. > > BARBIE > > > > > > > > > > > > ________________________________ > > From: Kim MacEachern <kimmaceachern@...> > > Group < > > > Sent: Mon, May 16, 2011 6:31:15 AM > > Subject: RE: Dental problems > > > > > > We have the same problem. Because of 's immune deficiency his bone > > growth is retarded - so his upper jaw is substantially smaller than his lower > > > jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now > > > starting down the path of braces, head gear, etc. at age 9 and at an >estimated > > > cost of $10,000. Our insurance will only cover $3000. > > > > The hospital for Sick Children was recommending that we wait until is >16 > > > and then have his jaw surgically fixed. This would be covered by our >provincial > > > medical plan, but far more invasive and it will take a long time to heal. AND > > > it doesn't mean that we won't still have to get him braces. > > > > I have tried to find coverage for the extra money that the braces head gear >plan > > > will cost us, but so far I haven't had much luck. It is unfortunate that the > > better treatment is not covered - but the painful invasive and more risky > > treatment would be free. There should be special funding for dental > > complications from a chronic disease - but I have yet to find it. > > > > I will appeal to our benefit plan with doctor and orthodontist letters, but > > chances are not good. I have asked our Immunology Department to research >other > > > funding options for us - maybe the IDF has some ideas ? > > > > Good luck ! > > > > Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) > > > > > > > > > > > > From: osdbmom@... > > Date: Fri, 13 May 2011 20:05:49 +0000 > > Subject: Dental problems > > > > > > > > > > > > > > I have some questions about possible dental problems that might be associated > > > with CVID. > > Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am > > curious to see if other kids with cvid might have similar issues. We have >been > > > rec'd to see an orthodontist, and Ive just gotten off the phone with the > > insurance who are telling me they will only cover orthodontist if it can be > > proven to be related to CVID, or a genetic disease of some kind. > > Some of the problems he has are: frequent cavities, despite good and regular > > dental care....he goes every six months for a cleaning, I always take him >right > > > in for fillings, etc. Often, when his baby teeth fall out, they are crumbly >and > > > soft. He keeps having tooth abcesses, and they dont clear up....I take him in > > > immediately, the dentist will drill and drain it, and start him right on abx, > > > and it will just keep getting worse or coming back. > > > > Right now, probably the biggest problems he's got is that bc of his health > > problems, he is still and has been for years, failure to thrive and his bone >age > > > is about 2 or so years behind, so he has the jaw size of a very small 6-7 >year > > > old, and the teeth of a 9 year old coming in, there is no room, he's got >teeth > > > coming in the wrong places, or coming in sideways, and in some areas where we > > > had to put a space maintainer in (bc we had to pull the abscessed tooth) the > > tooth above it is coming in, but coming into the wrong spot and going the >wrong > > > way, so there is some quandry about whether it would be best to take the >space > > > maintainers out, and let those big teeth come in in the wrong spot, or leave > > them in and hold the sideways adult teeth in his gums until there is more >room. > > > It is extremely likely he will need braces at some point, and they would like >to > > > get a plan going now. > > I am taking him in to his pcp soon for a well child check and I wanted to ask > > > about the possibility of a vitamin D/ calcium deficiency, I am curious if >that > > > is what causes his teeth to be so bad. > > > > I will need a dentist and an orthodontist to write letters on his behalf >stating > > > the reason for the state of his teeth for the insurance, unfortunately his > > regular dentist has just retired and the one replacing him is not looking >like > > > one we will be keeping. > > > > > > any advice would be appreciated, > > > > valarie > > mom to 3 w/cvid > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 GREAT...... with all the dental problems he already has, I went to pick him up from school yesterday and found him with over half of his front adult tooth missing....apparently the second graders were playing hockey with no head gear on...he got smacked in the mouth with a hockey stick!!! bc he really needs more problems, right? valarie mom to 3 w/cvid > > > > > > My son too has SEVERE overbite. We were told it was due to his severe sinus > > > disease as an infant and young child. He had to open an airway to be able to > > > > breathe so his arch heightened probably with is tongue. He started in WA > >state > > > > > at age of 8 with headgear and then we had to move cross country. In Oklahoma > > > > the state helped with braces so once he got his anxiety under control ( ran > >out > > > > > of building and hid under my car when they came at him with a glue syringe) > > > and a BETTER orthodontist we got them on. . A VERY long and expensive > >process. > > > > > He has now been in braces for another year that I am paying for out of > >pocket. > > > > > He has also had pretty severe gum disease that needs surgery but it will be > > > $1000 to remove a piece of skin that has overgrown and the state dental > > > insurance does not pay for it. So this has been a long 7 year process. I have > > > > > been told that he will also need jaw surgery when he gets older but doubt I > >will > > > > > move there for him. The BIGGEST problem has been the ABUSE and BULLYING he > > > endured in 3rd and 4th grade about his overbite. The day he got on his braces > > > > > was the day that he began to smile again. He use to cover his teeth with his > > > > upper lip and hold tight to try to deal with the overbite. It broke my heart. > >I > > > > > had NO idea that there was a possibility to get it paid for through > >insurance. > > > BARBIE > > > > > > > > > > > > > > > > > > ________________________________ > > > From: Kim MacEachern <kimmaceachern@> > > > Group < > > > > Sent: Mon, May 16, 2011 6:31:15 AM > > > Subject: RE: Dental problems > > > > > > > > > We have the same problem. Because of 's immune deficiency his bone > > > growth is retarded - so his upper jaw is substantially smaller than his lower > > > > > jaw. He has a severe underbite, tiny teeth, and severe crowding so we are now > > > > > starting down the path of braces, head gear, etc. at age 9 and at an > >estimated > > > > > cost of $10,000. Our insurance will only cover $3000. > > > > > > The hospital for Sick Children was recommending that we wait until is > >16 > > > > > and then have his jaw surgically fixed. This would be covered by our > >provincial > > > > > medical plan, but far more invasive and it will take a long time to heal. AND > > > > > it doesn't mean that we won't still have to get him braces. > > > > > > I have tried to find coverage for the extra money that the braces head gear > >plan > > > > > will cost us, but so far I haven't had much luck. It is unfortunate that the > > > > better treatment is not covered - but the painful invasive and more risky > > > treatment would be free. There should be special funding for dental > > > complications from a chronic disease - but I have yet to find it. > > > > > > I will appeal to our benefit plan with doctor and orthodontist letters, but > > > chances are not good. I have asked our Immunology Department to research > >other > > > > > funding options for us - maybe the IDF has some ideas ? > > > > > > Good luck ! > > > > > > Kim, mom to (age 9, with Hyper IgE - Job's Syndrome) > > > > > > > > > > > > > > > > > > From: osdbmom@ > > > Date: Fri, 13 May 2011 20:05:49 +0000 > > > Subject: Dental problems > > > > > > > > > > > > > > > > > > > > > I have some questions about possible dental problems that might be associated > > > > > with CVID. > > > Brennan, (9, asthma/allergies/gerd/cvid)has a lot of dental problems. I am > > > curious to see if other kids with cvid might have similar issues. We have > >been > > > > > rec'd to see an orthodontist, and Ive just gotten off the phone with the > > > insurance who are telling me they will only cover orthodontist if it can be > > > proven to be related to CVID, or a genetic disease of some kind. > > > Some of the problems he has are: frequent cavities, despite good and regular > > > > dental care....he goes every six months for a cleaning, I always take him > >right > > > > > in for fillings, etc. Often, when his baby teeth fall out, they are crumbly > >and > > > > > soft. He keeps having tooth abcesses, and they dont clear up....I take him in > > > > > immediately, the dentist will drill and drain it, and start him right on abx, > > > > > and it will just keep getting worse or coming back. > > > > > > Right now, probably the biggest problems he's got is that bc of his health > > > problems, he is still and has been for years, failure to thrive and his bone > >age > > > > > is about 2 or so years behind, so he has the jaw size of a very small 6-7 > >year > > > > > old, and the teeth of a 9 year old coming in, there is no room, he's got > >teeth > > > > > coming in the wrong places, or coming in sideways, and in some areas where we > > > > > had to put a space maintainer in (bc we had to pull the abscessed tooth) the > > > > tooth above it is coming in, but coming into the wrong spot and going the > >wrong > > > > > way, so there is some quandry about whether it would be best to take the > >space > > > > > maintainers out, and let those big teeth come in in the wrong spot, or leave > > > > them in and hold the sideways adult teeth in his gums until there is more > >room. > > > > > It is extremely likely he will need braces at some point, and they would like > >to > > > > > get a plan going now. > > > I am taking him in to his pcp soon for a well child check and I wanted to ask > > > > > about the possibility of a vitamin D/ calcium deficiency, I am curious if > >that > > > > > is what causes his teeth to be so bad. > > > > > > I will need a dentist and an orthodontist to write letters on his behalf > >stating > > > > > the reason for the state of his teeth for the insurance, unfortunately his > > > regular dentist has just retired and the one replacing him is not looking > >like > > > > > one we will be keeping. > > > > > > > > > any advice would be appreciated, > > > > > > valarie > > > mom to 3 w/cvid > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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