Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 So great to hear a good message. Thanks for letting us hear of your son's success. Dianne Grandma to Nora 15 and Emmy 13 Poly JIA > > > > > Hello dear friends. I thought it was about time to let you guys know how incredibly well has been doing. I have avoided using what I refer to as the " R " word for a long time - as in the past when would really seem to be improving we would drop the steriods 1/2 cc and bam he would have a horrible flare and end up back inthe hospital and then on doses increasingly higher than he had ever seen before. I always felt like I was waiting for the next flare and for so very long, we never seemed to have to wait long. The reality now is that it has been over two years since 's last flare. It has been about 4 years since his last hospitalization!!!! And now - are you ready for this???? It has been 9 months since his last steriod dose, 9 months since his last cyclosporine dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy has been medication free for 6 months!!! (With the exceptiion of the very rare motrin.) The rheumy is using the " R " word - but I am not quite ready for that... He does have the rare stiff morning and ocassional ache - but the ache is so rare that it may be from PE or baseball - but I am continuing to be vigilant. We still have concerns - his growth, his bone density, his back issues related to the compression fracture - but I am really starting to believe in that light at the end of the tunnel!! Those of you who have been around awhile remember well how much struggled - and as much as I was afraid to say out loud how well he is doing (like when he went a whole school year without being hospitalized for the first time - I didn't say anything til the last week of school!) - but there is hope - and there can be better times ahead! > > Val > Rob's Mom (12, systemic) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2010 Report Share Posted March 30, 2010 Yes , he certainly is! Val Re: Update on God is good. (n, 21, systemic) n Mar 25, 2010, at 11:53 AM, carneyval@... wrote: > Hello dear friends. I thought it was about time to let you guys know how incredibly well has been doing. I have avoided using what I refer to as the " R " word for a long time - as in the past when would really seem to be improving we would drop the steriods 1/2 cc and bam he would have a horrible flare and end up back inthe hospital and then on doses increasingly higher than he had ever seen before. I always felt like I was waiting for the next flare and for so very long, we never seemed to have to wait long. The reality now is that it has been over two years since 's last flare. It has been about 4 years since his last hospitalization!!!! And now - are you ready for this???? It has been 9 months since his last steriod dose, 9 months since his last cyclosporine dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy has been medication free for 6 months!!! (With the exceptiion of the very rare motrin.) The rheumy is using the " R " word - but I am not quite ready for that... He does have the rare stiff morning and ocassional ache - but the ache is so rare that it may be from PE or baseball - but I am continuing to be vigilant. We still have concerns - his growth, his bone density, his back issues related to the compression fracture - but I am really starting to believe in that light at the end of the tunnel!! Those of you who have been around awhile remember well how much struggled - and as much as I was afraid to say out loud how well he is doing (like when he went a whole school year without being hospitalized for the first time - I didn't say anything til the last week of school!) - but there is hope - and there can be better times ahead! Val Rob's Mom (12, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2010 Report Share Posted March 30, 2010 Thanks LIz! We are trying to work it into our schedule - has a tournament the weekend of the walk - I am working on getting more details on the tournament schedule so that we can participate. Val Update on Hello dear friends. I thought it was about time to let you guys know how incredibly well has been doing. I have avoided using what I refer to as the " R " word for a long time - as in the past when would really seem to be improving we would drop the steriods 1/2 cc and bam he would have a horrible flare and end up back inthe hospital and then on doses increasingly higher than he had ever seen before. I always felt like I was waiting for the next flare and for so very long, we never seemed to have to wait long. The reality now is that it has been over two years since 's last flare. It has been about 4 years since his last hospitalization!!!! And now - are you ready for this???? It has been 9 months since his last steriod dose, 9 months since his last cyclosporine dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy has been medication free for 6 months!!! (With the exceptiion of the very rare motrin.) The rheumy is using the " R " word - but I am not quite ready for that... He does have the rare stiff morning and ocassional ache - but the ache is so rare that it may be from PE or baseball - but I am continuing to be vigilant. We still have concerns - his growth, his bone density, his back issues related to the compression fracture - but I am really starting to believe in that light at the end of the tunnel!! Those of you who have been around awhile remember well how much struggled - and as much as I was afraid to say out loud how well he is doing (like when he went a whole school year without being hospitalized for the first time - I didn't say anything til the last week of school!) - but there is hope - and there can be better times ahead! Val Rob's Mom (12, systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 Alyssa, I dont know if you are able but 1-2 weeks before casting day i "quarantine" my son. I keep him at home and limit the people that can come over and i always make sure they are healthy first. This may not be an option for you but so far it has worked really well for us. Also, i dont know if the steroids are the same kind my son had after his brain surgery but if so be prepared...she may eat everything in sight and have trouble sleeping. Those were the side effects we really noticed from it. It may be a different kind though. I hope all goes well and she gets better and stays well so she can be casted! From: Alyssa <rogersalyssa12@...>Subject: Update on infantile scoliosis treatment Date: Thursday, April 29, 2010, 6:18 PM We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. Somedays I feel like I have the worse luck. Alyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 Aw! That is so disappointing! I hope the meds will clear things right up. I'll be praying the third time will be the charm. Hang in there! Hugs, ,mommy to Todd On Apr 29, 2010 7:19 PM, " Alyssa " <rogersalyssa12@...> wrote:  We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. Somedays I feel like I have the worse luck. Alyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 We try to "semi-quarantine" Bex for about a week before each cast, especially the five days right before. But he would go stir crazy if we never left the house. We just try not to take him to indoor classes, playrooms or enclosed spaces with other kids who could be sick. We still take him outdoors and to the park, and just steer him away from kids with a cough or runny nose (screaming, ha), then use antibacterial gel and wipes more diligently than usual. Hope this helps. Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)From: <missikay10@...>infantile scoliosis treatment Sent: Thu, April 29, 2010 4:26:26 PMSubject: Re: Update on Alyssa, I dont know if you are able but 1-2 weeks before casting day i "quarantine" my son. I keep him at home and limit the people that can come over and i always make sure they are healthy first. This may not be an option for you but so far it has worked really well for us. Also, i dont know if the steroids are the same kind my son had after his brain surgery but if so be prepared...she may eat everything in sight and have trouble sleeping. Those were the side effects we really noticed from it. It may be a different kind though. I hope all goes well and she gets better and stays well so she can be casted! From: Alyssa <rogersalyssa12>Subject: [infantile_scoliosi s] Update on infantile scoliosis treatment @groups. comDate: Thursday, April 29, 2010, 6:18 PM We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. Somedays I feel like I have the worse luck. Alyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 If it is prednisone it can have varying effects - it can make them moody and kind of crazy - even when I take it as an adult my family asks me when I'm going to be done taking it (I guess it kind of makes me a little edgey - to put it nicely) It does not effect my son that way though so hopefully you will have good results. If she happens to have severe allergies, which Londynn seems to - we went thru all the over the counter allergy meds - we were finally approved for Singulair - and that has helped tremendously. Good Luck we will be thinking of you. > > > >From: Alyssa <rogersalyssa12> > >Subject: [infantile_scoliosi s] Update on > >infantile scoliosis treatment @groups. com > >Date: Thursday, April 29, 2010, 6:18 PM > > > > > > > >We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. > > > >Somedays I feel like I have the worse luck. > > > > > >Alyssa > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 We are in our first cast - but the application of it got postponed due to illness the first time it was scheduled - so we kept her home from daycare the weekend and few days before casting just because we were afraid she would catch something. We did go with a runny nose and cough but we knew it was allergies - they were hesitant when we got there - but every doctor in the place checked her out and her lungs were clear - so they went ahead with the casting. We are scheduled to go back next week for our second cast - I can't believe it has already been 8 weeks. > > > >From: Alyssa <rogersalyssa12> > >Subject: [infantile_scoliosi s] Update on > >infantile scoliosis treatment @groups. com > >Date: Thursday, April 29, 2010, 6:18 PM > > > > > > > >We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. > > > >Somedays I feel like I have the worse luck. > > > > > >Alyssa > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 Glad you were able to get to the "bottom" of her illness, but sorry you have to wait longer for casting. Just enjoy the next two weeks and I will hope for NO illness and smooth sailing in the meantime. Keep us posted. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX From: Alyssa <rogersalyssa12@...>infantile scoliosis treatment Sent: Thu, April 29, 2010 6:18:05 PMSubject: Update on We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. Somedays I feel like I have the worse luck. Alyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 The Tuesday before her first cast I took her in to see her ped because she had been sick when I made the appt, but the day we went she was better. He thought her symptoms sounded like allergies and put her on zyertec and Singular. And then after the first cast and removal she seem to get a cough again so I called ped Monday before next cast and they called me in xopenex for breathing treatment to get rid of it fast. The pulmonologist gave us Budesonide (generic) steriod also for nebulizer.As far as "semi-quarantine", I would love to, but I work two days a week and she goes to daycare. That is probably were she picks her germs up. I would love to be a full-time stay at home mom, but I work in the medical profession and I have great insurance for all of these doctors appt and procedures. Alyssa, , 17 mo 28* curve, RVAD 8 Still no cast From: mckinneys <clmckinney64@...>infantile scoliosis treatment Sent: Thu, April 29, 2010 8:41:01 PMSubject: Re: Update on If it is prednisone it can have varying effects - it can make them moody and kind of crazy - even when I take it as an adult my family asks me when I'm going to be done taking it (I guess it kind of makes me a little edgey - to put it nicely) It does not effect my son that way though so hopefully you will have good results. If she happens to have severe allergies, which Londynn seems to - we went thru all the over the counter allergy meds - we were finally approved for Singulair - and that has helped tremendously. Good Luck we will be thinking of you. > > > >From: Alyssa <rogersalyssa12> > >Subject: [infantile_scoliosi s] Update on > >infantile scoliosis treatment @groups. com > >Date: Thursday, April 29, 2010, 6:18 PM > > > > > > > >We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. > > > >Somedays I feel like I have the worse luck. > > > > > >Alyssa > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 Yes she had a cough and they said they were really only hesitate because her oxygen levels were borderline before the procedure and because of what happened after last cast. At first when she had her first cast, in the recovery room her oxygen levels were low so they thought the cast was too tight so they trimmed and trimmed until they had to cut it off b/c it was no longer correcting. The pulmonologist seems to think it was the inflammation of her eczema. He said he will come into the O.R. next time to monitor her and keep her over night for observation after if needed. So that is nice. They realize how important this is for us.Alyssa, mom to , 17mo 28* Curve, Rvad 8still no castFrom: mckinneys <clmckinney64@...>infantile scoliosis treatment Sent: Thu, April 29, 2010 8:47:02 PMSubject: Re: Update on We are in our first cast - but the application of it got postponed due to illness the first time it was scheduled - so we kept her home from daycare the weekend and few days before casting just because we were afraid she would catch something. We did go with a runny nose and cough but we knew it was allergies - they were hesitant when we got there - but every doctor in the place checked her out and her lungs were clear - so they went ahead with the casting. We are scheduled to go back next week for our second cast - I can't believe it has already been 8 weeks. > > > >From: Alyssa <rogersalyssa12> > >Subject: [infantile_scoliosi s] Update on > >infantile scoliosis treatment @groups. com > >Date: Thursday, April 29, 2010, 6:18 PM > > > > > > > >We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. > > > >Somedays I feel like I have the worse luck. > > > > > >Alyssa > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 I am so sorry to hear....hope the medicine clears things up. I know it is frustrating & so emotional...waiting to get the 1st cast! Kristi Mommy to Sierra From: Alyssa Sent: Thursday, April 29, 2010 6:18 PM infantile scoliosis treatment Subject: Update on We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. Somedays I feel like I have the worse luck. Alyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2010 Report Share Posted May 1, 2010 Hi Alyssa, That makes total sense to me.... My niece has the same issues with allergies and eczema. She's on meds, as well, and does just great now. She's 6 now and her conditions flare up every once in a while, but she is a healthy, happy, vibrant child. Your child is too! I'm glad that you got some answers and that your ducks are all in a row. I know it feels unlucky, but I really believe that things are going to look up for you now. Chin up and I'll be praying for you! - Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III From: Alyssa <rogersalyssa12@...>Subject: Update on infantile scoliosis treatment Date: Thursday, April 29, 2010, 11:18 PM We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. Somedays I feel like I have the worse luck. Alyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2010 Report Share Posted May 4, 2010 Alyssa, In terms of allergies, I read a book recently: Dr. Kenntth Boch The childhood epidemics, ALlergies, Autism, ADHD and Asthma. My middle son, JOsh who is 5 1/2 has been chronically sick for years!! Croup SInus Infections etc. Is on antibbiotic and xopenex and prednisone religoupsly. I had him tested by a md (sort of homeopathic since regular skin tests are negaive). He had blood work that revealed IGG / IGE food allergies to wheat/ milk, soy, eggs and sesame. I took all of those foods out of his diet (which is sooooo hard) and he is a new child. He has no more wheezing, congestion and dark circles under his eyes are gone. For us this has been priceless. He has had ear tubes 2X, adenoid and tonsilectomy done and nothing helped him except this diet. It is worth investigatinb. It may or not help you. Good luck.... Aimee EMma 23 months in 7th cast greenville, sc > > We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. > > Somedays I feel like I have the worse luck. > > > Alyssa > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2010 Report Share Posted December 16, 2010 Hi Bee & everyone, My husband (the one with the broken back)is still having diarreah issues. We have decided to go back to basics with slow cooked meats and veggies, lots of bone broths, maybe some ghee as well as he is getting scarily skinny. I'm just a bit worried because I've read that eating too much meat leaches calcium from your bones and we need his back to heal. He is taking the egg shell calcium and I guess the broths have calcium in them too, is this enough? Quite worried about his back not healing properly and getting this diarreah under control again. Thanks, Traci. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2010 Report Share Posted December 16, 2010 > > Hi Bee & everyone, > My husband (the one with the broken back)is still having diarreah issues. We have decided to go back to basics with slow cooked meats and veggies, lots of bone broths, maybe some ghee as well as he is getting scarily skinny. I'm just a bit worried because I've read that eating too much meat leaches calcium from your bones and we need his back to heal. He is taking the egg shell calcium and I guess the broths have calcium in them too, is this enough? Quite worried about his back not healing properly and getting this diarreah under control again. +++Hi Traci, You should cook meats on low heat to medium, and cook vegetables until they change color and are soft - see this article: http://www.healingnaturallybybee.com/articles/veg3.php If eating too much meat leaches calcium from bones then the Eskimos and Masai people in Africa that Dr. Weston A. Price studied wouldn't have had strong bones and teeth, since they ate all meat and fat. If he has a minimum of 4 cups of good mineral-rich bone broth (made correctly by soaking bones in lemon juice, etc.) per day, he doesn't need eggshell calcium nor magnesium citrate. He needs to eat enough food every day too. Having less weight isn't an issue, since you know he is getting all of the " proper nutrients " his body needs regardless of weight, and that is most important. His protein, fat and carb ratios should be calculated according to his height - use the simple calculator here: http://www.healingnaturallybybee.com/articles/foods8.php Second, follow instructions in this article to figure out how many grams of each food group he gets, so you can adjust them and get close to his calculated ratios: http://www.healingnaturallybybee.com/articles/foods9.php Once his fat ratio is up to the lower range he can have as much meat and eggs as he wishes. In fact I have an all meat and fat program too. Diarrhea isn't a bad thing since that's one of the ways the body gets rid of toxins and it isn't harmful if he is getting " proper nutrients. " However, did he ever have diarrhea in the past, before starting on this program? All the best, Bee Quote Link to comment Share on other sites More sharing options...
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