Hi All - Hope you all are doing well and in good health. I have a two part question that I was hoping I could get some advice on. My son, Joseph is now two...
Hi Susan, I'm not sure about most of your questions, but I do know that James (my husband) has the flu vaccine every year since he can remember and has no ...
Hi Susan, I also have received the flu vaccine every year. It doesn't always prevent me from the getting the flu, but compared to all my officemates (who...
 Hi Susan              Ethan gets the flu vaccine every year.He has not got all of his shots either.Everytime he got the we had problems with...
Hi Susan, My 3.5 year old Julia has gotten the flu shot every year and has done fine with it. She did have a bad reaction to MMR--fevers and rash, but that...
Hi everyone, Just wanted to send an email about a new social network for Carers. The new site is http://www.carers.ning.com if enough people who care for...
Hi Liz, Julia is on Cellcept aka MMF as a systemic immunosuppressant. Julia was previously on imuran. I know that other people have also been on cyclosporin....
Hi Jennifer, James has changed from hydrocortisone to prednisone – much better on the prednisone as he isn’t going low all the time. Thanks for the advice...
HI Liz, My son also has the eye condition associated with APS. He uses a steriod drop along with cyclosporin(Restasis). I have never heard of Retinoic...
Hi Vicki, We live in Australia and so I'm names of drugs are different which is really annoying! The retinoic acid was prescribed by James's cornea specialist...
Thanks Liz for the info. We will discuss this with Ryan's doctor. How long has James used the drops? Can the Dr. Males tell if the drops are indeed reversing...
Hi Vicki, James has only been using the drops for a month - we have a review with the specialist on Monday - I'll let you know what they say J Liz From:...
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...
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