My name is Lily and I have a 2 year old son who is undiagnosed at this time. However, yesterday the doctor told me about APECED and how this could be a...
Hi Lily and Welcome, I went to your web site and Levi is adorable! How awful it is not to have a confirmed diagnosis and a definite plan of action. APECED can...
Hi all, James had his appointment at the eye hospital - but it was a different specialist! Apparently his normal specialist wanted another opinion. So I ...
HI Liz, Thanks for the update on James's appointment with his specialist. Using the Retinoic Acid drops sound hopeful. It is nice that he is able to...
Hi Lily,  Welcome to the APCED site. The pictures of Levi are just precious. Seeing them reminds me of my son when he was young. He has the eye condition...
Hi Lilly, My son, Joseph is also 2, his birthday was last week infact. One of his doctors suspected APECED back in May and we had a buccal test done. Results...
Hi all, I know I asked about this sometime last year but since then my computer died and I have to admit I can't remember what you all said. James suffers...
Hi Liz, Julia has suffered off an on from terrible constipation. The best med we have found is Miralax. You don't need to drink it with more than a glass of...
We are in Australia so hopefully we will be able to get it here. Got a doctors appointment this afternoon so will ask them about it. Thanks. Liz From:...
Hi Liz, My daughter is 36 and alternates between severe diarrhea and severe constipation, both conditions can last for months or years. Now she is constipated...
Hi Linda, James only has trouble with Potassium levels when in hospital for an addisonial crisis – and then it’s low potassium. Hope they can find...
Hi Everyone, As I wrote to Liz, Tara has been running alarmingly high Potassium levels this past month. This is a new complication and she has wound up in ICU...
Hi again Linda, Just thought I'd let you know that James has 2 florinef tabs a day. Liz From: apeced@yahoogroups.com [mailto:apeced@yahoogroups.com] On Behalf...
Hi everyone, I was wondering if any of you have experienced this before. Ryan became sick with food poisioning early Monday morning. I took him to our hospital...
Hi Vicki- I am so sorry to hear of the ordeal getting Ryan treated and quickly. We have not dealt with this yet with Emily. I hope he is better soon, and can...
Hi Vicki, We didn't have this problem until we moved to another state because the old hospital knew James and would get a bed ready as soon as they saw him. ...
Tara had the same problem a few years ago when she was taken by ambulance to the nearest hospital which was not the one she usually went to. She had no blood...
Hi Jaci, Liz & Linda,  Thank you all for your good wishes. We heard today Ryan is supposed to be moved out of ICU today. They have stopped the BP medication...
Good news on Ryan Vicki, I hope he can come home soon! I guess I haven't talked with you in a while, but Ed is home!! He got home late August, 6 months...
Hi Jaci, I am happy to hear Ed is home! That is wonderful! I know you are so relieved. It's great to hear Emily is doing well. Please have a safe trip and a...
Hi Everyone, I am writing this to find out if any of you have problems with Low Magnesium Levels.We went to the doctor for leg cramps and they told us he had...
Hi Donna, I was going to post a message to you about potassium but I will start with magnesium. This has been an on-going problem for Tara whenever her other...
... they ... guess ... Hi Donna, Charlotte has suffered with low magnesium for about 4 years. She suffered terrible leg cramps which debilitated her for about...
Hi all. I have been diagnosed with hashimoto's, adrenal insufficiency and ulcerative colitis. Diagnosis for thyroid adrenal at 16 and colitis at 23 (25 now)....
Hi Vanessa, Welcome to our board. Have you ever been diagnosed as having APS Type 2?(Autoimmune Polyglandular Syndrome) Your combination of illnesses suggests...
Hi, I haven't posted in a while - we're nearing the end of our adoption process so am busy getting things ready for our son. Anyway, I'm worried I may be...
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