Hi Jaci,

  Glad to hear Emily had a good visit with Dr. Winer. I
have heard of the PTH injection and mentioned it to
Dr. Winer when Ryan visited her. She also said at that
time it was being studied and didn't want to start
Ryan on it. I hope it is perfected very soon so that
our children will be able to benefit from it. It would
be great!
Ryan has began using Restasis again and we are hoping
for good results. The last time he didn't use them
long enough to make a difference. Dr. Smith mentioned
possibly trying autolgous serum drops, where they take
blood from the patient and make them into eye drops.
Had Emily tried this? Ryan's ophthamologist here in
Houston also mentioned trying this if Restastis
doesn't work. Please let me know how the biopsy
results come out. I hope they can learn something from
it to help Emily. I remember how hard it was to watch
Ryan trying to play sports, or have pictures taken.
  Anyway, tell Emily and the rest of the family we said
hi, and we are thinking of all of you preparing for
Ed's deployment.
Take care,
Vicki
--- Mary Spraktes <mspraktes@...> wrote:

> Hi Jaci,
>   I know that I am new to this great support group,
> but Jessica would love to be a pen pal.  She likes
> to get on the internet and email and perhaps IM.
> Let me know, I think it would be very therapeutic if
> they could talk.
>
> Jaci OBrian <jaciobrian@...> wrote:
>               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@...
>
>
>   ----- Original Message ----
> From: vrobson1 <vrobson1@...>
> 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
=== message truncated ===




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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.

I just added some pictures of Emily, and one of all of our kids too.
For some reason at firs they were added to a different album, and I
don't know how to delete them from there, if the moderator can help me
out, let me know.
thanks!
Jaci

--- 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.
>

--- 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.
>

--- 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.
>

Hi Mary and welcome to our forum!!!!
I won't go into too many details about my daughter, Tara, but
suffice it to say she started off with Hypoparathyroidism, then
Addisons by age 6, then Juvenile Rheumatoid Arthritis, age 14,
Ovarian Dysfunction, and at age 26 very severe diarrhea and
malabsorption and pernicious Anemia. At age 33 Type 1 Diabetes and
now, at  34, Vertilago.. Recently she had a bout of autoimmune
hepatitis and after a round of IVIG she started low dose Imuran.
This worked quickly and within a few months her liver function tests
were as normal as they have ever been. her only side effects from
the Imuran were intermittent stomach aches but she was able to deal
with them. I think she was more tired than usual also.

Please ask any questions of this group and we will try to answer
them.This is one of the most caring groups of individuals I have
ever encountered. I am also emailing you the link to an APS 1
(APECED) web site started by another parent in this group.  Getting
on that mailing list will also be helpful because they are working
with NORD National Organization of rare Diseases) to try to get a
research grant and funding which might lead to further treatment
opportunities.
Again welcome and best wishes to you and your daughter.
Linda

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.

--- In apeced@yahoogroups.com, Jaci OBrian <jaciobrian@...> wrote:
>Hi Jaci,

It is so nice to hear from you. I am so glad Emily is doing well.
Please tell her we said Happy Birthday. Hope she had a good one.
Dr. Smith suggested Ryan have a biopsy of his eyes also. She told us
his cornea specialist here in Houston could do it if we wanted. We
haven't set up the appointment yet. Please let me know how things go
next week with Emily's.
We received a call from Dr. Smith's office saying one of Ryan's lab
test came back abnormal. They took many blood samples while we were
at the NIH. Ryan has labs done every three months for his endo &
liver specialist, and they have been normal. We saw a Hematologist
last Thursday, and he doesn't think there is anything to worry about
but wants Ryan to have a few more labs done. We are hoping for good
results.
Hope you all have a nice Easter.
Take care, and keep in touch,
Vicki
> Hi Vicki & everyone else in the APECED group!
> My name is Jaci, and we were the lucky family that got to meet
Vicki, Tom & Ryan when they came to DC in January.  We just visited
Dr. Smith again yesterday at NIH, Emily goes in next Wed. for her
routine EUA, Dr. Smith wants to do a biopsy as well, so she can study
the cells in her eyes more closely.  She is also going to give us a
referral to see Dr. Winer the endo dr. as well.  Emily has been doing
great, we really have had an uneventful year, compared to others.
(knock on wood).  Emily just turned 9 last Friday too!  For those
that don't know us, Emily was diagnosed with APECED 5 years ago,
after showing symptoms for 9 months before then, and no one could
figure out what was going on, after sending us to different doctors.
Luckily, once we moved to this area, it all was figured out.  My
husband is in the army, so we see drs. at Walter Reed, which have
been great, we see several endocrinologists there.  Emily has
hypoparathyroidism, hypothryoidism, photophobia,
>  vitilago, ??...ok, and I know I am forgetting some other things
too, obviously not to prevelant though.
> looking forward to meeting more of you in this group.
> Vicki, I still need to send you those pictures from when you were
here, I will look thru my computer and try to send them now, so I
don't forget.
> Happy Easter!!
> Jaci :-)
>
>
> ----- Original Message ----
> From: Vicki Robson <vrobson1@...>
> To: apeced@yahoogroups.com
> Sent: Saturday, March 10, 2007 3:07:09 PM
> Subject: Re: [apeced] Re: Hi
>
> HI Linda,
>
> The IVIG sounds great. Thanks for telling me about it.
> I will search IVIG and Apced, so I can tell his endo
> all about it. You are so lucky to have Dr. Maclaren
> nearby. He sounds wonderful! I really wish we had a
> proactive endo who was knowledgeable about APCED. You
> would think with our large Medical Center here in
> Houston, we would! I am questioning Ryan's endo's
> treatment since we visited the NIH, and Dr. Winer
> changed his medication and dosages, and the diagnosis
> of osteoporosis.
> I am so glad Tara is doing better, and hope the IVIG
> will help her gain her weight back. Ryan has gained
> weight since being over medicated on prednisone. He
> was always tall and thin,(6'2"), but now is about
> 15-20 lbs overweight.
> I do believe Ryan was tired quite often while on the
> Imuran, and I remember he had several eye infections
> as well.
> He decided to take this semester off from school to
> do his microsoft certications instead. He is also
> working with his dad at our business and is getting a
> great deal of experience being their Tech Guy, and
> creating websites for clients. He hopes to return to
> school next semester.
> I understand when you say Tara has an amazing spirit
> of optimisim. Ryan seems to have the same.
> Take care, and talk to you soon,
> Vicki
> --- lsquittman <lsquittman@optonlin e.net> wrote:
>
> > Hi Vicki,
> > Tara's liver function tests were occasionally
> > elevated but this is the
> > first time they have been elevated for so many
> > months. The IVIG
> > cleared up most of her problems last time for two
> > years but it took
> > two rounds of infusions. She is not having constant
> > watery diarrhea
> > and is absorbing her medication but she is painfully
> > thin and Dr.
> > Maclaren feels it will stop the diarrhea altogether
> > and she will be
> > able to gain weight. It should also help the liver
> > function return to
> > normal boosted by the Imuran. And it provides
> > immunity against
> > infection. If you do a search -IVIG and APECED or
> > APS1 you will see
> > that other people with APS 1 and autoimmune problems
> > have benefitted
> > from this treatment. Can't hurt.
> > Was Ryan unusually tired when he was on the Imuran?
> > That seems to be a
> > major problem and Tara has frequent stomach aches
> > which she never had
> > with the malabsorption.
> > The thing that keeps me going is all the research
> > being done, the fact
> > that she finally has a doctor who is proactive and
> > really knows what
> > to do and Tara's amazing spirit of optimism.
> > I wish Ryan all the best. How are his studies
> > going?
> > Best wishes,
> > Linda
> >
> >
> >
> >
> >
>
> ____________ _________ _________ _________ _________ _________ _
> Don't pick lemons.
> See all the new 2007 cars at Yahoo! Autos.
> http://autos. yahoo.com/ new_cars. html
>
>
>
>
>
>
______________________________________________________________________
______________
> Don't pick lemons.
> See all the new 2007 cars at Yahoo! Autos.
> http://autos.yahoo.com/new_cars.html
>

Hi Jaci and welcome to our forum.  For so many years I had no one to
talk to and so little comprehension of this illness.  I rely on so
many members of this group for support, knowledge and
understanding.  Best wishes to everyone out for a happy holiday-  no
matter which holiday you celebrate.
Linda



--- In apeced@yahoogroups.com, Jaci OBrian <jaciobrian@...> wrote:
>
> Hi Vicki & everyone else in the APECED group!
> My name is Jaci, and we were the lucky family that got to meet
Vicki, Tom & Ryan when they came to DC in January.  We just visited
Dr. Smith again yesterday at NIH, Emily goes in next Wed. for her
routine EUA, Dr. Smith wants to do a biopsy as well, so she can
study the cells in her eyes more closely.  She is also going to give
us a referral to see Dr. Winer the endo dr. as well.  Emily has been
doing great, we really have had an uneventful year, compared to
others.  (knock on wood).  Emily just turned 9 last Friday too!  For
those that don't know us, Emily was diagnosed with APECED 5 years
ago, after showing symptoms for 9 months before then, and no one
could figure out what was going on, after sending us to different
doctors.  Luckily, once we moved to this area, it all was figured
out.  My husband is in the army, so we see drs. at Walter Reed,
which have been great, we see several endocrinologists there.  Emily
has hypoparathyroidism, hypothryoidism, photophobia,
>  vitilago, ??...ok, and I know I am forgetting some other things
too, obviously not to prevelant though.
> looking forward to meeting more of you in this group.
> Vicki, I still need to send you those pictures from when you were
here, I will look thru my computer and try to send them now, so I
don't forget.
> Happy Easter!!
> Jaci :-)
>
>
> ----- Original Message ----
> From: Vicki Robson <vrobson1@...>
> To: apeced@yahoogroups.com
> Sent: Saturday, March 10, 2007 3:07:09 PM
> Subject: Re: [apeced] Re: Hi
>
> HI Linda,
>
> The IVIG sounds great. Thanks for telling me about it.
> I will search IVIG and Apced, so I can tell his endo
> all about it. You are so lucky to have Dr. Maclaren
> nearby. He sounds wonderful! I really wish we had a
> proactive endo who was knowledgeable about APCED. You
> would think with our large Medical Center here in
> Houston, we would! I am questioning Ryan's endo's
> treatment since we visited the NIH, and Dr. Winer
> changed his medication and dosages, and the diagnosis
> of osteoporosis.
> I am so glad Tara is doing better, and hope the IVIG
> will help her gain her weight back. Ryan has gained
> weight since being over medicated on prednisone. He
> was always tall and thin,(6'2"), but now is about
> 15-20 lbs overweight.
> I do believe Ryan was tired quite often while on the
> Imuran, and I remember he had several eye infections
> as well.
> He decided to take this semester off from school to
> do his microsoft certications instead. He is also
> working with his dad at our business and is getting a
> great deal of experience being their Tech Guy, and
> creating websites for clients. He hopes to return to
> school next semester.
> I understand when you say Tara has an amazing spirit
> of optimisim. Ryan seems to have the same.
> Take care, and talk to you soon,
> Vicki
> --- lsquittman <lsquittman@optonlin e.net> wrote:
>
> > Hi Vicki,
> > Tara's liver function tests were occasionally
> > elevated but this is the
> > first time they have been elevated for so many
> > months. The IVIG
> > cleared up most of her problems last time for two
> > years but it took
> > two rounds of infusions. She is not having constant
> > watery diarrhea
> > and is absorbing her medication but she is painfully
> > thin and Dr.
> > Maclaren feels it will stop the diarrhea altogether
> > and she will be
> > able to gain weight. It should also help the liver
> > function return to
> > normal boosted by the Imuran. And it provides
> > immunity against
> > infection. If you do a search -IVIG and APECED or
> > APS1 you will see
> > that other people with APS 1 and autoimmune problems
> > have benefitted
> > from this treatment. Can't hurt.
> > Was Ryan unusually tired when he was on the Imuran?
> > That seems to be a
> > major problem and Tara has frequent stomach aches
> > which she never had
> > with the malabsorption.
> > The thing that keeps me going is all the research
> > being done, the fact
> > that she finally has a doctor who is proactive and
> > really knows what
> > to do and Tara's amazing spirit of optimism.
> > I wish Ryan all the best. How are his studies
> > going?
> > Best wishes,
> > Linda
> >
> >
> >
> >
> >
>
> ____________ _________ _________ _________ _________ _________ _
> Don't pick lemons.
> See all the new 2007 cars at Yahoo! Autos.
> http://autos. yahoo.com/ new_cars. html
>
>
>
>
>
>
_____________________________________________________________________
_______________
> Don't pick lemons.
> See all the new 2007 cars at Yahoo! Autos.
> http://autos.yahoo.com/new_cars.html
>

HI Linda,

The IVIG sounds great. Thanks for telling me about it.
I will search IVIG and Apced, so I can tell his endo
all about it. You are so lucky to have Dr. Maclaren
nearby. He sounds wonderful! I really wish we had a
proactive endo who was knowledgeable about APCED. You
would think with our large Medical Center here in
Houston, we would! I am questioning Ryan's endo's
treatment since we visited the NIH, and Dr. Winer
changed his medication and dosages, and the diagnosis
of osteoporosis.
I am so glad Tara is doing better, and hope the IVIG
will help her gain her weight back.  Ryan has gained
weight since being over medicated on prednisone. He
was always tall and thin,(6'2"), but now is about
15-20 lbs overweight.
I do believe Ryan was tired quite often while on the
Imuran, and I remember he had several eye infections
as well.
  He decided to take this semester off from school to
do his microsoft certications instead. He is also
working with his dad at our business and is getting a
great deal of experience being their Tech Guy, and
creating websites for clients. He hopes to return to
school next semester.
I understand when you say Tara has an amazing spirit
of optimisim. Ryan seems to have the same.
Take care, and talk to you soon,
Vicki
--- lsquittman <lsquittman@...> wrote:

> Hi Vicki,
> Tara's liver function tests were occasionally
> elevated but this is the
> first time they have been elevated for so many
> months.  The IVIG
> cleared up most of her problems last time for two
> years but it took
> two rounds of infusions. She is not having constant
> watery diarrhea
> and is absorbing her medication but she is painfully
> thin and Dr.
> Maclaren feels it will stop the diarrhea altogether
> and she will be
> able to gain weight.  It should also help the liver
> function return to
> normal boosted by the Imuran. And it provides
> immunity against
> infection. If you do a search -IVIG and APECED or
> APS1 you will see
> that other people with APS 1 and autoimmune problems
> have benefitted
> from this treatment. Can't hurt.
> Was Ryan unusually tired when he was on the Imuran?
> That seems to be a
> major problem and Tara has frequent stomach aches
> which she never had
> with the malabsorption.
> The thing that keeps me going is all the research
> being done, the fact
> that she finally has a doctor who is proactive and
> really knows what
> to do and Tara's amazing spirit of optimism.
> I wish Ryan all the best.  How are his studies
> going?
> Best wishes,
> Linda
>
>
>
>
>




________________________________________________________________________________\
____
Don't pick lemons.
See all the new 2007 cars at Yahoo! Autos.
http://autos.yahoo.com/new_cars.html

Hi Vicki,
Tara's liver function tests were occasionally elevated but this is the
first time they have been elevated for so many months.  The IVIG
cleared up most of her problems last time for two years but it took
two rounds of infusions. She is not having constant watery diarrhea
and is absorbing her medication but she is painfully thin and Dr.
Maclaren feels it will stop the diarrhea altogether and she will be
able to gain weight.  It should also help the liver function return to
normal boosted by the Imuran. And it provides immunity against
infection. If you do a search -IVIG and APECED or APS1 you will see
that other people with APS 1 and autoimmune problems have benefitted
from this treatment. Can't hurt.
Was Ryan unusually tired when he was on the Imuran? That seems to be a
major problem and Tara has frequent stomach aches which she never had
with the malabsorption.
The thing that keeps me going is all the research being done, the fact
that she finally has a doctor who is proactive and really knows what
to do and Tara's amazing spirit of optimism.
I wish Ryan all the best.  How are his studies going?
Best wishes,
Linda

HI Linda,

It does seem like there is always something to worry
about, and it gets more difficult to accept I think.

Dr. Winer, at the NIH, changed Ryan's calcium dosage
while we were there, so hopefully he is now getting
the correct dosage. Before, he was taking four 5oomg
calcium morning and night but was only absorbing 5oomg
each time. He is now taking one 500mg calcium, four
times a day. His endo, here in Houston told him to
exercise, take his calcium as prescribed, and she
would do another bone density test in a year. If it
has not improved she would put him on medication. She
told  us she believes he wasn't getting enough calcium
growing up and that contributed to his osteoporosis.
He was also taking more cortisone than needed
prescribed by his current endo. That dosage was
reduced by Dr. Winer too.
The abnormal blood test I was referring to is called
flow cytometry and it was done in the research lab at
the NIH. The doctor there said it is not normally done
by doctors when ordering blood test. They ordered it
for Ryan to check his immune cells, along with many
other test, to find the cause of his eye problem. He
said a population of Ryan's immune cells were slightly
elevated, and he wanted a Hematologist to repeat the
test here. He said it could be an error, or something
minor, but it would be best to check it out.
Ryan's liver enzymes have been normal for a while, but
he is having his liver biopsy the end of March. We do
them every two years. The last one show improvement in
the liver, but he had been on Imuran for about two
years. I think the Imuran really improved the
condition of his liver. Now that he has been off for a
while, I am hoping it has not regressed.
Does Tara have IVIG only for the diarrhea? I have not
mentioned that to his endo, but will ask her.
Take care,
Vicki

--- lsquittman <lsquittman@...> wrote:

> Hi Vicki,
> Doesn't it seem like there is always something to
> worry about? Can
> Ryan take something like Fosomax to strengthen his
> bones?  Is it from
> the HPTH or the steroids? I know when Tara had her
> bunionectomies over
> 10 years ago the doctor told me she had a lot of
> calcifications even
> then.
> You were not specific about which blood values were
> abnormal.  Tara's
> liver function tests are abnormal and she is on
> Imuran. That's what I
> mean- always something.
> I hope the re-test shows improvement.
> Did you ever ask Ryan's doctor about using IVIG?
> Best wishes,
> Linda
>
>




________________________________________________________________________________\
____
Get your own web address.
Have a HUGE year through Yahoo! Small Business.
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Hi Vicki,
Doesn't it seem like there is always something to worry about? Can
Ryan take something like Fosomax to strengthen his bones?  Is it from
the HPTH or the steroids? I know when Tara had her bunionectomies over
10 years ago the doctor told me she had a lot of calcifications even
then.
You were not specific about which blood values were abnormal.  Tara's
liver function tests are abnormal and she is on Imuran. That's what I
mean- always something.
I hope the re-test shows improvement.
Did you ever ask Ryan's doctor about using IVIG?
Best wishes,
Linda

HI Linda,

I am happy to hear things are better for Tara. I hope
she continues to do well. We have learned Ryan has
osteoporosis after having a bone scan at the NIH. He
also had a abnormal blood test that has to be redone
here in Houston. This worries me but I am trying to
stay optimistic.
Take care,
Vicki
--- lsquittman <lsquittman@...> wrote:

> Hi Vicki, et.al,
> Things are improving here in New York although we
> are not out of the
> woods yet. Maybe by the time some warmer weather
> takes hold our lives
> will return to a normal pattern. More IVIG is in the
> wind and then we
> shall see.
> Hope to hear from all of you soon.
> Best wishes,
> linda
>
>
> --- In apeced@yahoogroups.com, "vrobson1"
> <vrobson1@...> wrote:
> >
> >
> > How is everyone doing? Hope things are going well
> and hope to hear
> > from all of you soon.
> > Take care,
> > Vicki
> >
>
>
>




________________________________________________________________________________\
____
Be a PS3 game guru.
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Hi Vicki, et.al,
Things are improving here in New York although we are not out of the
woods yet. Maybe by the time some warmer weather takes hold our lives
will return to a normal pattern. More IVIG is in the wind and then we
shall see.
Hope to hear from all of you soon.
Best wishes,
linda


--- In apeced@yahoogroups.com, "vrobson1" <vrobson1@...> wrote:
>
>
> How is everyone doing? Hope things are going well and hope to hear
> from all of you soon.
> Take care,
> Vicki
>

How is everyone doing? Hope things are going well and hope to hear
from all of you soon.
Take care,
Vicki

Hi Julia,

Yes, they are "hoarse" pills and he is not fond of
taking them. I am glad we were able to see Dr. Winer
and get the dosage reduced.
Take care,
Vicki
--- Julia Peterson <juliap99@...> wrote:

> Hi Vicki,
>
>   Yes you are right - you do only absorb 500mg of
> calcium at a time.  That's interesting that he was
> on so much calcium!  That's a lot of "hoarse" pills
> to swallow!
>
>   Julia
>
>
> ---------------------------------
> Sucker-punch spam with award-winning protection.
>  Try the free Yahoo! Mail Beta.




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____
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Hi Vicki,
I was going to take Tara to the NIH before we found Dr. Maclaren.
As far as calcium supplements I just realized that she does take a
Viactive bar about once a day and the liquid calcium when she feels
tingly. I asked her how much oral calcium she does take at these
times but she tells me she just drinks it from the bottle. It is an
automatic response for her.
  She has been on as little as .5 mcg of Rocaltrol at times but .75
to 1.0 is more of the usual dose.
Since the IVIG infusions last month her diarrhea has cleared up but
not her stomach pains. She has lost considerable weight and is
apparently still not absorbing all that well. She continues to have
sleep issues and is definitely not her robust self. But I see signs
of improvement daily so I feel encouraged. She sees Dr. Maclaren
next week and I am going with her this time.  I am anxious to hear
what he thinks.
Linda

-- In apeced@yahoogroups.com, Vicki Robson <vrobson1@...> wrote:
>
> Hi Linda,
>
> Thanks for the information. I wasn't sure how much
> cortisone Ryan should be taking. So, Tara doesn't take
> any calcium supplements unless she has symptoms? When
> was she able to stop taking calcium?
>  Are you still considering getting an appointment with
> Dr. Winer at the NIH? She told us she had been seeing
> APS patients for 15 yrs, but never one with the eye
> problem. I do think she is very knowledgeable about
> APS.
> I hope Tara is doing well. Take care,
> Vicki
> --- lsquittman <lsquittman@...> wrote:
>
> > Hi Vicki and Julia,
> > Tara takes 30 mg. of hydrocortisone a day and
> > alternates between .75
> > mcg. and 1 mcg. of Rocaltrol (Vit. D) daily.
> > Ususally she doesn't
> > take extra oral calcium unless she feels some
> > tingling in her
> > fingers.  Julia, I do think your endo is correct in
> > keeping your
> > calcium at 8 if you don't have symptoms or problems
> > with
> > malabsorption.  We always kept Tara's in the mid 9's
> > because she
> > sometimes fell one point and wound up in the 8's.
> > She had symptoms,
> > as a child, when her calcium fell into the 7's.
> > However calcification
> > of the kidneys is now an issue and I wish we had
> > kept her levels lower
> > all of these years.
> > Vicki, It sounds as if your experience at the NIH
> > was positive and I
> > hope the suggestions will help Ryan's vision.
> > Best wishes to all.
> > Linda
> >
> >
>
>
>
>
>
_____________________________________________________________________
_______________
> TV dinner still cooling?
> Check out "Tonight's Picks" on Yahoo! TV.
> http://tv.yahoo.com/
>

Hi Linda,

Thanks for the information. I wasn't sure how much
cortisone Ryan should be taking. So, Tara doesn't take
any calcium supplements unless she has symptoms? When
was she able to stop taking calcium?
  Are you still considering getting an appointment with
Dr. Winer at the NIH? She told us she had been seeing
APS patients for 15 yrs, but never one with the eye
problem. I do think she is very knowledgeable about
APS.
I hope Tara is doing well. Take care,
Vicki
--- lsquittman <lsquittman@...> wrote:

> Hi Vicki and Julia,
> Tara takes 30 mg. of hydrocortisone a day and
> alternates between .75
> mcg. and 1 mcg. of Rocaltrol (Vit. D) daily.
> Ususally she doesn't
> take extra oral calcium unless she feels some
> tingling in her
> fingers.  Julia, I do think your endo is correct in
> keeping your
> calcium at 8 if you don't have symptoms or problems
> with
> malabsorption.  We always kept Tara's in the mid 9's
> because she
> sometimes fell one point and wound up in the 8's.
> She had symptoms,
> as a child, when her calcium fell into the 7's.
> However calcification
> of the kidneys is now an issue and I wish we had
> kept her levels lower
> all of these years.
> Vicki, It sounds as if your experience at the NIH
> was positive and I
> hope the suggestions will help Ryan's vision.
> Best wishes to all.
> Linda
>
>




________________________________________________________________________________\
____
TV dinner still cooling?
Check out "Tonight's Picks" on Yahoo! TV.
http://tv.yahoo.com/

Hi Vicki and Julia,
Tara takes 30 mg. of hydrocortisone a day and alternates between .75
mcg. and 1 mcg. of Rocaltrol (Vit. D) daily.  Ususally she doesn't
take extra oral calcium unless she feels some tingling in her
fingers.  Julia, I do think your endo is correct in keeping your
calcium at 8 if you don't have symptoms or problems with
malabsorption.  We always kept Tara's in the mid 9's because she
sometimes fell one point and wound up in the 8's.  She had symptoms,
as a child, when her calcium fell into the 7's. However calcification
of the kidneys is now an issue and I wish we had kept her levels lower
all of these years.
Vicki, It sounds as if your experience at the NIH was positive and I
hope the suggestions will help Ryan's vision.
Best wishes to all.
Linda

HI Julia,

Thank you very much for the info. Your endo sounds as
if she in on top of things. I know Ryan's endo here in
Houston thinks Prednisone is a better choice but not
sure why. Dr. Winer at the NIH said taking HC would
make Ryan feel better, and suggested he take 20mg in
the morning & 5mg at bedtime. I also thought he would
have to take HC more frequently than prednisone.
Ryan was taking 4000mg of Oscal daily, but now is
reduced to 2000mg, plus .50mcg of rocaltrol.His
calcium level has been 8.2 to 8.4. Dr. Winer explained
we only absorb 500mg at one time so all of the extra
he had been taking was excreted. Ryan did have a bone
density test as well as other labs while we were
there. She gave him the new prescriptions while we
were at the NIH and ask him to start them immediately.
We don't want to cause friction with his current endo
but want to do what is best for Ryan. We will see her
in Feb.
Thanks again for your help.
Take care, Vicki
--- Julia Peterson <juliap99@...> wrote:

> Hi Vicki,
>
>   I just recently saw my endo and asked her about my
> steroid dosage (prednisone) which is now at 7.5 mg
> (and has been that for a while) - I asked her if I
> should switch to hydrocortisone and she said it was
> my choice, but since I was having no real problems
> with prednisone (DEXA still looks great) - she siad
> it was a toss up - she did mention that HC is more
> physiologically similar to what are adrenals would
> produce, and that I would need to take it more
> frequently than prednisone.  She said that the
> equivalend dose of hydrocortisone(or HC as I call
> it) for a 7.5 mg daily dose of prednisone is 28 mg
> of HC.  Simply put 28mg HC = or roughly equals 7.5mg
> prednisone.  So maybe 25 mg HC is just a minute step
> down for him and could be equivalent to 6 or 6.5mg
> prednisone.
>
>   Anyway,
>
>   I also asked her about my calcium.  She has kept
> my serum calcium levels at around 8.0 (which is
> slightly  below normal values) and I wondered why
> she was doing this.  She mentioned that the clinical
> recommendations are pointing towards this lower
> maintenance of serum calcium for hypoparathyroidism.
>  I guess I trust her since she is a young teaching
> doctor at OSU, but I'm aware that others on here
> have different care.  It could be that the answer is
> still unclear as the where to keep calcium levels.
> I take 1200mg of calcium citrate per day and 0.75mcg
> of rocaltrol (the vit D that we need and don't
> produce to help absorb and use calcium) - My endo
> recommends that we try to find the lowest dose of
> Rocaltrol possible so that we minimize bone turnover
> and loss.
>
>   So, I'm not sure If I helped any but thought I
> would give the information I recently received.
>
>   glad to hear the visit went well!
>
>
>   Julia
>
>
> ---------------------------------
> Be a PS3 game guru.
> Get your game face on with the latest PS3 news and
> previews at Yahoo! Games.




________________________________________________________________________________\
____
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Hi Everyone,

We are back from our visit to the NIH. We saw Dr. Winer and she was
very nice. She suggested Ryan reduce his cortisone level, change to
Hydrocortisone instead of Prednisone, and reduce his calcium dosage
to
half of what he was taking. She said he had symptoms of too much
cortisone, as I had suspected. After trying to convert his old dosage
of 7.5mg of prednisone to the new dose of 25mg hydrocortisone, I am
not
sure it is reduced that much. Can anyone give me their opinion on
this?

I am also very concerned about the large dose of calcium Ryan has
taken
over the past 8 years. His current endo didn't want to change any of
his dosages. I am now questioning her treatment.
We also saw Dr. Smith, the cornea specialist. She was great, but
didn't
have much to offer Ryan for his eye condition. She said there just
aren't many cases to go by. There are a few things to try and we are
hoping one of these will help his eyes.

We met a wonderful family at the NIH, whose 9 yr old daughter has
APCED
and the eye problem. I told her about this website and she is very
anxious to talk to other moms of apced children.

Hope everyone is doing well. Please keep in touch.
Take care, Vicki