--- In EvansSyndrome@yahoogroups.com, Amy Walsh <smlybly@...> wrote:
>
> Hi Laurie,
>
> My son, Aidan, was diagnosed with evans syndrome when he was 10
months old. He also battled many other problems including chronic
repiratory infections (often pnuemonia) for years. He was diagnosed
with a primary immune deficency when he was about 4. An appointment
with an immunologist is a perfect next step for Nik. If you don't
mind me asking, where are you from? Have you heard of the immune
deficiency foundation? It is a fabulous patient organization that can
provide you with a ton of information to have on hand before his
appointment with an immunologist. You can visit the website
www.primaryimmune.org and order any materials (for free). Or if you
would like me to send you some materials (I volunteer for IDF) e-mail
me your address in a private e-mail. I definitely recommend reading
the Patient and Family Handbook and IDF Clinical Care Guidelines.
>
> Please feel free to ask me any questions and please keep us updated.
> Amy Walsh mom to Aidan 7 years with combined immune deficiency and
multiple autoimmune diseases (including evans)...successful BMT 6/4/07

>
> Laurie Gedz <nikgmom@...> wrote:
> Hi All.
> I was wondering if any of you have problems with pneumonia. My 16
yr. old son Nik has had pneumonia almost non-stop since February. His
blood counts have been pretty stable- just below normal range. His
hemo. doctor had his immunities tested- Igg, IVIG, etc. All came back
extremely low. Now we are on a cancellation waiting list to get Nik
into an immunologist. In the past- since Nik was 17 mos. old., we have
battled low platelets, low white cells, and anemia. Nik is on Advair,
Albuterol, Zyrtec, and singulair. He has had multiple courses of
different antibiotics. He has been off steroids for quite some time.
Do any of you have past experience with pneumonia? Thanks for any
info. and/or suggestions.
>
> Laurie
> Nik's mom
>
Hello Laurie this is similar to what my son has been going through he
is 19 and the Hematology group we have recently changed to has put him
on ivig for low globulin counts he receives that once a month he to
has been taking claritin decongestants and antibiotics he always
seems to be on those as doesnt do well without them the cough turns
into pnuemonia counts have recently been stable and ct are going to be
compared soon , he also has been off steroids for a few months if i
learn anything else i will let you know but the cough and pnuemonia
are also a big struggle for us as well the allergist could not find
any specific allergy.
Julie
aaron's mom