Hi everyone, I have a few questions for all of you.Ethan is in the hospital with an adernal crisis. They have also found that is potassium is so high that it...
Hi Donna, I hope Ethan is feeling better. Yes, this is something to watch out for because during stress times Ethan needs more cortisone. The problem is how...
Hi Linda            I have to let you know that Ethan was not sick when all of this happend.The doctors told me what to look for so this won't...
Donna, I'm so glad you were able to catch it with labs. It seems that I know how to tell if my own body needs extra cortisone, but how diffidult it must be to...
Hi Julia This is what the doctors are telling me that Ethan has the start of diabetes.When Ethan was in the adernal crisis his blood sugar stay at 108 to 112...
Hi Donna - this is a late response. I was on GH as a child because I stopped growing at about age 9 and went off the growth chart (negatively that is). I was...
Hi all, I am writing due to some concern for my nephew (my brother's son). He is 2.5 months old and has had thrush a few times already. It has recently...
Hi Julia, i am relatively new to the site. Joseph, now 22 months old was just diagnosed with his symptoms only being chronic thrush, and nail dystrophy, and...
Hi Julia, Wish I could help but Tara's symptoms were quite different. We didn't suspect anything was wrong until she was 2 1/2. Her only problems till then...
Hi Julia, It sounds like it would be genetically unlikely for your nephew to have APS, but if your sister in law is interested in testing, it might put her at...
Thanks everyone for your comments. Seems like we should wait it out until he turns 6 months to see what happens. My mother and I don't want to scare my...
Ethan is having eye problems he has dilated pupils alot and say the hurt when light its them. I was also wondering if any of you have problem with keeping your...
Hi Donna, I'm sorry to hear about Ethan's eyes. Julia's pupils started to dilate at around 14 months and within a year they were very sensitive to light. Julia...
Hi Julia Ethan already has Addison's.I bet they have forgotten about the calcium levels.They have told me that Ethan does not go by the books like everyone...
Hi Donna, We are told continually that "Julia is Julia" and she doesn't go by the books either, but the more I hear from people in this group, the more I think...
Please see below. Jennifer Orange Torys LLP ... From: Jennifer Orange <jenniferorange@...> To: Orange, Jennifer Sent: Wed Sep 17 11:53:15 2008 Subject:...
Thanks, Jennifer, for updating us on this important piece of research. Rituximab, or Rituxan as it is known here in the U.S., has had positive effect for...
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...
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