My 24 yr old son has APCED. It began with an eye condition at age 4,
then candidias soon after, and at age 15 was diagnosed with autoimmune
hepatitis and HPTH. At age 20, addison's disease. His major problem at
the moment is his eye condition. He has scarring of the corneas and
impaired vision, and we were recently told by a occular immunologist in
Boston his candidias may be related to this. He has attended college
but has missed several semesters due to his health problems.
I would love to hear from other mothers of children with APCED, and
anyone who might also have a related eye condition such as my son.
I am so grateful to Linda for all of her work on this website. She is
a wonderful and kind person, and I know it will help all of us to
share our worries with each other.
Vicki
(from Houston,Texas)
My 24 yr old son has APCED. It began with an eye condition at age 4, then candidias soon after, and at age 15 was diagnosed with autoimmune hepatitis and HPTH....
hi vicki, my son jason whom has apeced also has inflammation of the cornea in both eyes, and severe dry eyes, when he was just 14 months old i was told that...
... It is so nice to talk to another mom whose child has an eye condition with APCED. My son eyes used to be very light sensitive, but now they are not as bad...
Hi vicki, Jason's eyes seem to be getting better from they realised that his vitamin A levels where low. The doctor use to describe Jasons eye like the shape...
Hi Kathy, That is wonderful the Vitamin A has helped your son so much! I know it is difficult putting him under general anesthetic. I hope things go well at...
HI Kathy, I was wondering how much Vitamin A your son took for his eyes? Did his doctor suggest a certain brand of vitamin, and what was his dosage? We are...
Hi Vicki, Jason would have his vitamins all checked each time he has his calcuim checked, by his endocrinologist. He was on a drop form of medication to begin...
Becky also had Vitamin A deficiency eye problems due to her not absorbing her fat soluble vitamins A,D,E,and K. She has used ADEK's for years but they weren't...
HI Susan, I can't not tell you how excited I am to hear this. We had seen so many doctors over the past 19 yrs and no one has ever suggested checking his Vit A...
Hello Karen, The local pharmacist ordered the medicine, Aquasol( Vitamin A) and I gave the injection in Becky's leg. I am a nurse so that comes in handy...
HI Susan, That's ok, I will answer to any name. Thanks for the Vit A injection info. It is nice you can give the injection yourself. I have several friends...
HI Kathy, I, too, wish someone could have helped my son, Ryan from the start. At age 4 we began seeing eye doctors, and they sent us from one to the other,...
Hi susan and vicki, I have never heard off an vitamin a injection before, Jasons vitamin A levels seem to stay low Know matter what we up his medicine too, He...
Hi Kathy, I am go glad your son eyes are doing well. I will learn soon if my son will need the injections. We should get his labs back tommorrow or Monday. My...
Hi Kathy and All, Sorcha eye doctor never asks for calcium levels, vitimin levels or anything like that. When she first went to him when she was two with the...
Hi Kathy and All, Sorcha eye doctor never asks for calcium levels, vitimin levels or anything like that. When she first went to him when she was two with the...
Hi Vicki First of all please feel free to ask any thing, i am just greatful that i could possibly be of some help. Jason's endro is the one who deals with all...
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