Hi Vicki, My daughter has recently been diagnosed with hepatitis, but her doctor is unsure of how to really treat her. We will be sent to the Un. Of...
... Sorry to hear about your daughter's diagnosis of hepatitis. My son has liver enyme blood test done every three months, and liver biopsies done every two...
Thanks for the reply. We will be going to Seattle in three weeks. How high (if you remember were his liver enzymes?) Jessica's have been up and down, but...
Hi Mary, Sorry I can't remember how high his enymes were, but I believe they were mildly elevated for several months, and his doctor then decided to put him on...
Hi Mary, Tara's liver enzymes have fluctuated since she was a baby but they would always return to normal over time so she never had any treatment. However,...
... I am sorry to hear Tara had an Addison's crisis. How is she doing? I hope much better. Take care, Vicki ... has ... son ... wants ... you ... old. ... ...
Hi Folks, Looks like Tara is having severe stomach problems again. Not sure if it is from the Imuran or just her malabsorption starting up but I know the...
HI Linda, Sorry to hear Tara is having stomach problems. Has she ever tried eating yougurt? It seems to help Ryan when he has diarrhea. Hope things improve...
Hi Vicki, Yes, Tara does eat yougurt but even that doesn't seem to agree with her. She was a little better last night after following the new diet so we will...
Linda, I wish I had some insights. But, I have nad no problems with my liver, so it is unknown territory for me. I hope that Tara feels better soon and that...
Hi Linda, I am glad to hear Tara is doing better on the new diet. I hope it continues. Sorry I don't have anything else to offer. I will let you know if I hear...
Hi , I am so sorry to hear that Tara is having problems with her bowels. It is a bad deal to feel like that. I hope once she is off of the Imuarn that it...
Hi , I am so sorry to hear that Tara is having problems with her bowels. It is a bad deal to feel like that. I hope once she is off of the Imuarn that it...
Hello everyone, We haven't poseted anything since our initial email searching for doctors who are knowledgable about Apeced. At that time Julia was still in...
Hi Jennifer, I am glad you have an appointment with Dr. Deal. I think this might help because my daughter cannot tolerate the calcium carbonate either so she...
Thanks, Linda. That is very helpful. Jennifer ... From: apeced@yahoogroups.com <apeced@yahoogroups.com> To: apeced@yahoogroups.com <apeced@yahoogroups.com> ...
Linda, one more question on this point. How did you know that it was the calcium carbonate that was causing your daughter trouble? Julia has been vomiting off...
Hi Jennifer, Tara had been on a different oral calcium called Neocalglucon for several years. She was diagnosed at age 3 1/2 and by the time they took...
There are also Viactiv chews you could always try. I have been taking Calcium citrate for some time now and only ever notice burping afterwards. Of course, I...
Thanks to all for the helpful responses. We found a liquid calcium gluconate supplement. The only supplier of the product in Ontario seems to be Walmart of all...
Hi Jennifer, Thanks for keeping us posted. The syrup you are using is probably the same formulation as the one Tara uses. I recently learned that it is best...
Linda, I also was informed recently by my endo that doctors are trying to manage hypoparathyroidism with as minimal calcitriol as possible and as much oral...
Hi Julia, One reason for the lower calcitriol doses may be the build up of calcium in the kidneys. The oral calcium is less likely to cause this. I was also...
Hi Linda, If you don't mind, why is Tara taking Imuran. The reason I am asking, Jessica went to Seattle last week, she was seen by a couple of m.d. there,...
Hi Mary, Tara is taking Imuran for autoimmune hepatitis. However her levels didn't come down until she had a round of IVIG last week. She was in the hospital...
Dear Jennifer, Hello I am Jerry. First I am a person with Polyglandular type II. Second I am not a doctor so anything I say is just a layman telling stories......
Becuase Tums is an antacid, it impedes the absorption of calcium. Therefore I was advised that taking Tums for calcium was not efficient. You will get only...
Hi Jerry, Jennifer, Julia, etc., APS 1 is such a complicated illness that it requires the most complex of treatments and the most knowledgeable doctors in the ...
hello everybody, i am karens daughter, amy.Im posting this today as i have candidiasis in my mouth, and i am worried that it has spread to my stomach or ...
Hi Amy, I am Tara's mom and she also has stomach difficulties similar to yours. But she doesn't have the candidiasis so I don't know if you both have the same...
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