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...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 I am SOO sorry Valarie. Not a HUGE deal these days but I understand the MORE money and time that goes into it. I have a front tooth that I smacked out at his age and it is still with me 40 years later. SORRY BARBIE ________________________________ From: osdbmom <osdbmom@...> Sent: Tue, May 17, 2011 6:08:53 AM Subject: Re: Dental problems 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...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 I am SOO sorry Valarie. Not a HUGE deal these days but I understand the MORE money and time that goes into it. I have a front tooth that I smacked out at his age and it is still with me 40 years later. SORRY BARBIE ________________________________ From: osdbmom <osdbmom@...> Sent: Tue, May 17, 2011 6:08:53 AM Subject: Re: Dental problems 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...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 I just wanted to mention that my daughter also had a very small upper jaw. The Ortho I worked with was wonderful. She believes in working with there growth and put in a palate expander. I had to crank this thing every night. She said you do it when the kids are still little and the roof of there mouth is not fully bone yet. It has a open crack down the middle. By cranking this thing and slowly opening it results in a larger upper jaw. Once they get it open enough they let it stay and new bone growth fills it in. The thing looks like a retainer in the top of there mouth. My daughter did great and it cost less than $3000 for that, a lip bumper, and top braces for a couple months. Just a thought.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 I just wanted to mention that my daughter also had a very small upper jaw. The Ortho I worked with was wonderful. She believes in working with there growth and put in a palate expander. I had to crank this thing every night. She said you do it when the kids are still little and the roof of there mouth is not fully bone yet. It has a open crack down the middle. By cranking this thing and slowly opening it results in a larger upper jaw. Once they get it open enough they let it stay and new bone growth fills it in. The thing looks like a retainer in the top of there mouth. My daughter did great and it cost less than $3000 for that, a lip bumper, and top braces for a couple months. Just a thought.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 My 11yo dd (not PID) had an expander, too, as a phase one of braces. It did very well to expand her jaw, and except for a little soreness, she got used to it being cranked. It gave her a lot more room It cost $2000 for a year of braces, expander, and the retainer. My 9yo ds (with CVID) is autistic, and the ortho didn't think he would cooperate with this (me: put MY fingers in his mouth to crank!). Not sure what we will do with him yet. We are waiting for his four front top teeth to fully come in, to go back and see the ortho again (he had 4 teeth pulled a year ago, to allow room for his two front teeth to rotate to where they are supposed to be). Luckily, ds9 has healthy, but crooked/crowded teeth Mindy, in Va. > I just wanted to mention that my daughter also had a very small upper jaw. > The Ortho I worked with was wonderful. She believes in working with > there growth and put in a palate expander. I had to crank this thing > every night. She said you do it when the kids are still little and the > roof of there mouth is not fully bone yet. It has a open crack down the > middle. By cranking this thing and slowly opening it results in a larger > upper jaw. Once they get it open enough they let it stay and new bone > growth fills it in. The thing looks like a retainer in the top of there > mouth. My daughter did great and it cost less than $3000 for that, a lip > bumper, and top braces for a couple months. > > Just a thought.... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2011 Report Share Posted May 17, 2011 My 11yo dd (not PID) had an expander, too, as a phase one of braces. It did very well to expand her jaw, and except for a little soreness, she got used to it being cranked. It gave her a lot more room It cost $2000 for a year of braces, expander, and the retainer. My 9yo ds (with CVID) is autistic, and the ortho didn't think he would cooperate with this (me: put MY fingers in his mouth to crank!). Not sure what we will do with him yet. We are waiting for his four front top teeth to fully come in, to go back and see the ortho again (he had 4 teeth pulled a year ago, to allow room for his two front teeth to rotate to where they are supposed to be). Luckily, ds9 has healthy, but crooked/crowded teeth Mindy, in Va. > I just wanted to mention that my daughter also had a very small upper jaw. > The Ortho I worked with was wonderful. She believes in working with > there growth and put in a palate expander. I had to crank this thing > every night. She said you do it when the kids are still little and the > roof of there mouth is not fully bone yet. It has a open crack down the > middle. By cranking this thing and slowly opening it results in a larger > upper jaw. Once they get it open enough they let it stay and new bone > growth fills it in. The thing looks like a retainer in the top of there > mouth. My daughter did great and it cost less than $3000 for that, a lip > bumper, and top braces for a couple months. > > Just a thought.... > > > > Quote Link to comment Share on other sites More sharing options...
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