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 doctor that our daughter Emily sees.  Although, I would never wish to meet so many dealing with all the same issues that we are, it was reassuring to know others knew what we were dealing with when she told me about this group.  My daughter Emily has APECED as well, she is 9 years now.  She was diagnosed 5 years ago, but has probably had it for 6 years, as we went from dr. to dr. for help when she started showing different symptoms, without knowing what she had.  She really has come a long way since then, but I know we will probably have more battles in the future as well.  Her most prominent problem is her hypoparathryoidism, light sensitive eyes, hypothyroidism, and most recently (in the past 1-2 years) vitilago.  Vicki, we actually just met with Dr. Winer at NIH last week, and talked about the new protocol study they are doing on hypoparathyroid patients, they are given the PTH injection, instead of taking daily vitamin d & calcium, or at least reducing the amounts.  She doesn't want to start Emily on it yet, as there are still unknowns on what the PTH does to your bones.  She would just make the study age limit anyways with it starting at 9 years.  She was actually pleased with how Emily was doing right now, and with her levels with everything.  I do have to call her this week to go ove the labs they drew, hopefully everything is fine.  I am kind of glad we don't have to add that to our plate right now anyways with Ed deploying to Iraq this summer.  And, really hoping we have an uneventful year at the doctors while he is away for the year. 

Emily is just starting to get to the age where she is asking, will my eyes always be this way, will they ever get better, will I always have to take all these medicines, etc..etc...  She is a doll though, and is living a normal 9 year olds life   We are so proud of her!!  She actually just had her hip hop dance pictures taken today, and looked so cool in her hollywood sunglasses!!  I always seem to get teary-eyed on any picture day, as I know it is hard for her to get a "normal" picture with her eyes open, she usually ends up wearing her sunglasses and is fine with it.  I think as a mom though, it tears at me more. 

We are still waiting to hear results on the biopsy Dr. Smith did last month at her eye exam under anesthesia.  She is hoping doing the biopsy will help them know what else can be used for treatment of the light sensitive eyes.  She has done well on the Restasis drops though, so we have been lucky. 

If anyone in the group has a child that might want to be penpals with Emily, I am sure she would welcome the new friendship, especially knowing someone else is dealing with the same health issues as her.

have a great weekend, everyone!

Jaci

jaciobrian@yahoo.com

----- Original Message ----
From: vrobson1 <vrobson1@yahoo.com>
To: apeced@yahoogroups.com
Sent: Saturday, May 26, 2007 2:38:03 PM
Subject: [apeced] Re: 15year girl with APECED

--- In apeced@yahoogroups. com, Mary Spraktes <mspraktes@. ..> wrote:
>Hi Mary,

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 young age. He seems to take it a day at a time, and
tries to think postively. I know he worries but doesn't let me know he
does. I think it helps them to have someone to talk to. Ryan used to
see a therapist and I think it helped him a great deal with his health
and social anxiety issues. Ryan is also concerned about his looks. His
eye problem has caused impaired vision and light sensitivity, so he
can't always look directly into a person's eyes when talking. He is
very self concious about this.
Ryan has felt well for the most part while on cortisone for the
addisons. He is tired frequently, and sleeps more, but does work five
days a week, and has insomnia sometimes. While on the Immuran he also
felt well except for a few eye infections, and one bout of shingles.
He was on prednisone for a few months before the Immuran, and then the
prednisone was discontinued. He took the Immuran for about 2- 2 1/2
yrs. His doctor told us many people take Immuran and seem to tolerate
it well. Hopefully Jessica will do just fine.

We are all here to help and support each other so please feel free to
email whenever you want. It helps so much to talk to other moms and
patients who are in the same situation.
Keep in touch and take care,
Vicki

> 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 unsure of how to answer the question. I
did tell her that she needs to do one thing, to be a 15 year old girl.
I would do the worring, and she would do the other. Again with her
wonderful smile, she said okay mom, I will do my best. Like any other
15 year old, she is concerned with her looks. She is worried about
the steriods and how she will feel. We have many questions regarding
the Imuran and steroid therapy. How do you feel, how long etc. But
once again thanks for email. I will let Jessica know aobut your
letter. Mary in Idaho
>
> vrobson1 <vrobson1@.. .> wrote: --- In
apeced@yahoogroups. com, Mary Spraktes <mspraktes@> wrote:
> >Hi Mary,
>
> 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 hypoparathyroism. Then addisons disease, thryoid, and
> loss of tooth enamel at age 20. His eyes are his main concern
> currently.
> He has taken Immuran for two years and is now off. When he was first
> diagnosed with AIH we were told it was to the point of cirrohsis,
> and he would probably need a transplant around age 18. It has now
> improved to fibrosis, and his liver enzymes have been normal for a
> long time now. I know many patients take Immuran for very long
> periods of time. The length of time depends on the condition of the
> liver and your doctor's suggestions.
> We have so many nice people on this site who are here to help and
> share experiences. As we all know it is not easy having a child with
> such a rare disease. Please keep in touch.
> Take care,
> Vicki
> > 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, anitbodies to ovaries. This January, she was
> diagnosed with autoimmune hepatitis. I would love to talk to other
> families that are going through the same things. One question that I
> have is to the best medication for the hepatitis. Several doctors
> have mentioned Imuran, steroids. Is there anyone out there with this
> aspect of the disease that could help me. Also, we feel very worried
> regarding her best outlook. Up until this year, we thought that we
> were one of the few with APECED. Our information gathering has been
> bad. I am very excited to learn and hear from others who have been
> going through the same things as my daughter. Thanks Mary
> >
> > ------------ --------- --------- ---
> > Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see
> what's on, when.
> >
>
>
>
>
>
>
> ------------ --------- --------- ---
> Get your own web address.
> Have a HUGE year through Yahoo! Small Business.
>

---

Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.