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 the ICU with terrible damage to her lungs from pneumonia. She is
now home, and while still on oxygen, is much better than she was. We
now have an appointment with Dr. Deal in Montreal to consider immune
suppresants. If anyone has any feedback on this course, I would
appreciate it.
For the last 2 months Julia has been vomiting on and off. We are now
having problems keeping her calcium down as she seems to vomit it right
after we give it. Has anyone else had this problem? Do you know if
there is an alternative to calcium carbonate that is easier on the
stomach?
Many thanks,
Jennifer, mother of Julia, 2.5 yrs
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...
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