Hi Everyone, We are back from our visit to the NIH. We saw Dr. Winer and she was very nice. She suggested Ryan reduce his cortisone level, change to ...
Hi Vicki, I just recently saw my endo and asked her about my steroid dosage (prednisone) which is now at 7.5 mg (and has been that for a while) - I asked her...
HI Julia, Thank you very much for the info. Your endo sounds as if she in on top of things. I know Ryan's endo here in Houston thinks Prednisone is a better...
Hi Vicki and Julia, Tara takes 30 mg. of hydrocortisone a day and alternates between .75 mcg. and 1 mcg. of Rocaltrol (Vit. D) daily. Ususally she doesn't ...
Hi Linda, Thanks for the information. I wasn't sure how much cortisone Ryan should be taking. So, Tara doesn't take any calcium supplements unless she has...
Hi Vicki, I was going to take Tara to the NIH before we found Dr. Maclaren. As far as calcium supplements I just realized that she does take a Viactive bar...
HI LInda, Yeah, the crazy thing is, my peds endo (i have a different one now) had me on 1.5 mcg of roacaltrol without any calcium supplements for most of my...
Hi Vicki, Yes you are right - you do only absorb 500mg of calcium at a time. That's interesting that he was on so much calcium! That's a lot of "hoarse"...
Hi Julia, Yes, they are "hoarse" pills and he is not fond of taking them. I am glad we were able to see Dr. Winer and get the dosage reduced. Take care, Vicki ...
Hi Vicki, et.al, Things are improving here in New York although we are not out of the woods yet. Maybe by the time some warmer weather takes hold our lives ...
HI Linda, I am happy to hear things are better for Tara. I hope she continues to do well. We have learned Ryan has osteoporosis after having a bone scan at the...
Hi Vicki, Doesn't it seem like there is always something to worry about? Can Ryan take something like Fosomax to strengthen his bones? Is it from the HPTH or...
HI Linda, It does seem like there is always something to worry about, and it gets more difficult to accept I think. Dr. Winer, at the NIH, changed Ryan's...
Hi Vicki, Tara's liver function tests were occasionally elevated but this is the first time they have been elevated for so many months. The IVIG cleared up...
HI Linda, The IVIG sounds great. Thanks for telling me about it. I will search IVIG and Apced, so I can tell his endo all about it. You are so lucky to have...
Hi Vicki & everyone else in the APECED group! My name is Jaci, and we were the lucky family that got to meet Vicki, Tom & Ryan when they came to DC in January....
Hi Jaci and welcome to our forum. For so many years I had no one to talk to and so little comprehension of this illness. I rely on so many members of this...
... It is so nice to hear from you. I am so glad Emily is doing well. Please tell her we said Happy Birthday. Hope she had a good one. Dr. Smith suggested Ryan...
Hello, my name is Mary. My daughter is 15 and has APECED. She has been diagsnosed since the age of 1. She has hypoparathyroid, lack of teeth enamel,...
Hi Mary, I have APECED, although in a different configuration than your daughter. I do not know if it is helpful or reassuring to you. But, I have Addison's,...
Welcome to this group! Everyone here (the few of us really since this syndrome is rare) are VERY informative and supportive. I, Julia, have had APECED since...
Hi Mary and welcome to our forum!!!! I won't go into too many details about my daughter, Tara, but suffice it to say she started off with Hypoparathyroidism,...
... Welcome to our group. My 24 yr old son has APCED also. His began with inflamed corneas and candidiasis at age 4. At age 15 he was diagnosed with AIH and...
Thank you so much for the reply. I am so afraid of the unknown possiblities in the future. So is Jessica. She asked me the other day if she will die? I was...
... The unknown is very frightening. I worry about Ryan constantly. It breaks my heart to see our children deal with all of these health problems at such a...
Hi Mary- welcome to the group, I just discovered it a few months ago after meeting Vicki, her husband & Ryan while they were in the DC area seeing the same eye...
I just added some pictures of Emily, and one of all of our kids too. For some reason at firs they were added to a different album, and I don't know how to...
Hi Jaci, I know that I am new to this great support group, but Jessica would love to be a pen pal. She likes to get on the internet and email and perhaps IM....
Hi Jaci, Glad to hear Emily had a good visit with Dr. Winer. I have heard of the PTH injection and mentioned it to Dr. Winer when Ryan visited her. She also...
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