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Heather,
I am glad Erik is doing well! Aidan has had a stable CBC for about 7 months. He is really looking forward to summer and says he can't wait to go swimming!! Besides evans syndrome, Aidan had guillain barre syndrome almost 2 years ago. Although he still receives PT and OT, he is about 92% recovered and we are hoping in another year we can say he is 100%. More recently he was diagnosed with mild psoriasis and more severe vitiligo. Thankfully these are both non-threatening and purely cosmetic, however might be more upsetting once he reaches his teen years...we are not there yet. He has been seeing an immunologist who has been monitoring him for a possible immune deficiency. Besides the four autoimmune problems he suffers from chronic respiratory infections. We see the immunologist and hemoc again on Monday so I am hoping for some answers then.
I think I may have asked this a few months ago, but if anyone else in the group has experience with immune deficiencies PLEASE share...or e-mail me privately. They were 99.9% sure Aidan had CVID and wanted to vaccinate him to make sure (Lou, I held them off for almost 1 year) they were prepared to start treating him w/out the vaccines when I finally gave in...found out today he made antibodies to vaccines and his total IgG rose from 300 to 700 so he does not have CVID!!! He is deficient in IgG2 and IgG4 so I am thinking maybe they are going to diagnose him with an IgG subclass deficiency. In any case I have a long list of questions already written out to ask the doctors and have been doing my research homework so am hopefully prepared with what they tell me.
Sorry what started out as a short message turned out to be so long winded...if anyone has any experience with what I just rambled on about please share!!!
Amy
Heather Brigger <chbrigger@...> wrote:
Heather Brigger <chbrigger@...> wrote:
Thanks Amy,
We will have to check it out. If I may ask what are the four other
autoimmune diseases that Aidan has? Erik has been doing really well. We
have been busy with school and he is starting baseball season. We just got
a puppy too so that is keeping me really busy. Thanks for the info on the
book. I will have to look on Amazon.
It has been very quiet lately...I guess no news is good news right.
Heather (mom to Erik 9 1/2 years)
----- Original Message -----
From: <EvansSyndrome@yahoogroups.com>
To: <EvansSyndrome@yahoogroups.com>
Sent: Wednesday, May 04, 2005 3:36 PM
Subject: [EvansSyndrome] Digest Number 1022
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
> 1. book
> From: Amy Walsh <smlybly@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
> Date: Wed, 4 May 2005 11:43:19 -0700 (PDT)
> From: Amy Walsh <smlybly@...>
> Subject: book
>
> Hi everyone,
> I am currently reading an interesting book. Maybe some of you have read
> it? It is called Living Well With Autoimmune Disease, what your doctor
> doesn't tell you...that you need to know by Mary J. Shomon. I am less
> than half way through it, but thought I would share in case anyone is
> interested in reading it. The first 1/4 of the book goes over some "key"
> autoimmune diseases and the rest discusses both "traditional" and
> "holistic" approaches to caring for the autoimmune patient. It is a guide
> to "treat the underlying causes of immune system imbalance, not just the
> symptoms."
> Aidan has recently been diagnosed with his fourth autoimmune disease
> (seventh, if you count Evans as three) so I found this book while
> researching these diseases on line. If any of you have read it, what did
> you think?
> It has been quiet lately...I hope everyone is doing well.
> Amy (mom to Aidan 4yrs)
>
>
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