Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 The particular ectodermal dysplasia immune deficiency that my son has affected the development of his teeth and hair, they are both unusual. And his skin is different, he has trouble regulating his body temperature and healing. The same process that has caused these abnormalities has probably caused his chronic diarrhea. I hope this makes sense, it is difficult to describe. Anjie Mom of Devon 5/1/98 PID and 2/1/96 Anjie Hi, Anjie, can you tell me what ectodermal dysplasia is? I have not heard of it before. , mum in Australia to 2 pid pumpkins, (5) and (3) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Anjie - has Devon had an MRI of his hypothalamus for the body temperature problem? Macey has always had problems regulating her body temp and had an MRI at 3 and 4 yrs of age to see if there was anything wrong with her hypothalamus (the brain part that regulates body temperature). She also heals poorly but we've always blamed that on her steroid use. Her teeth have been a constant problem lately but I'm sure you have different issues with Devon's teeth. Are they misaligned or miscolored? We're starting with our 3rd ped dentist and oral surgeon on Thursday because we can't get a decent opinion about her care. One dentist had a conservative approach, which is what we want, but still racked up over $2000 in her estimate of what needs to be done. The second opinion was close to $3000 and wanted to extricate 2 teeth, crown 4, do a nerve removal on one of the extrications and then x-rays. Also he wanted a generic surgical release so that if he saw anything (literally) else he needed to do in surgery he would have free reign. HAAAA!!! So now we're off to Augusta on Thursday to the Medical College for another opinion. Macey's also having a gastric emptying study done on Wednesday. Fun week huh. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://maceyh.home.att.net Anjie Hi, Anjie, can you tell me what ectodermal dysplasia is? I have not heard of it before. , mum in Australia to 2 pid pumpkins, (5) and (3) This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Ursula, We have not had an MRI done to check that in particular. It was done to look for a cancerous abscess when he had EBV, none was found. His teeth are misaligned and discolored, and he has horrible breath! We have not seen a dentist yet, believe it or not. Our ped has not pressured us to do so because of the amount of invasive work he already has done on a regular basis, such as eye exams that are horrid. Good luck with your week, it sounds like a challenge! Anjie Re: Anjie Anjie - has Devon had an MRI of his hypothalamus for the body temperature problem? Macey has always had problems regulating her body temp and had an MRI at 3 and 4 yrs of age to see if there was anything wrong with her hypothalamus (the brain part that regulates body temperature). She also heals poorly but we've always blamed that on her steroid use. Her teeth have been a constant problem lately but I'm sure you have different issues with Devon's teeth. Are they misaligned or miscolored? We're starting with our 3rd ped dentist and oral surgeon on Thursday because we can't get a decent opinion about her care. One dentist had a conservative approach, which is what we want, but still racked up over $2000 in her estimate of what needs to be done. The second opinion was close to $3000 and wanted to extricate 2 teeth, crown 4, do a nerve removal on one of the extrications and then x-rays. Also he wanted a generic surgical release so that if he saw anything (literally) else he needed to do in surgery he would have free reign. HAAAA!!! So now we're off to Augusta on Thursday to the Medical College for another opinion. Macey's also having a gastric emptying study done on Wednesday. Fun week huh. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Ursula, We have not had an MRI done to check that in particular. It was done to look for a cancerous abscess when he had EBV, none was found. His teeth are misaligned and discolored, and he has horrible breath! We have not seen a dentist yet, believe it or not. Our ped has not pressured us to do so because of the amount of invasive work he already has done on a regular basis, such as eye exams that are horrid. Good luck with your week, it sounds like a challenge! Anjie Re: Anjie Anjie - has Devon had an MRI of his hypothalamus for the body temperature problem? Macey has always had problems regulating her body temp and had an MRI at 3 and 4 yrs of age to see if there was anything wrong with her hypothalamus (the brain part that regulates body temperature). She also heals poorly but we've always blamed that on her steroid use. Her teeth have been a constant problem lately but I'm sure you have different issues with Devon's teeth. Are they misaligned or miscolored? We're starting with our 3rd ped dentist and oral surgeon on Thursday because we can't get a decent opinion about her care. One dentist had a conservative approach, which is what we want, but still racked up over $2000 in her estimate of what needs to be done. The second opinion was close to $3000 and wanted to extricate 2 teeth, crown 4, do a nerve removal on one of the extrications and then x-rays. Also he wanted a generic surgical release so that if he saw anything (literally) else he needed to do in surgery he would have free reign. HAAAA!!! So now we're off to Augusta on Thursday to the Medical College for another opinion. Macey's also having a gastric emptying study done on Wednesday. Fun week huh. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
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