is going back to CHOP - Prayers Please!

March 15, 2005

Hi Everyone,

Well the time has finally come! With officially 2 now,

we are leaving in the morning for CHOP (Children's Hospital of

Philadelphia) to finally meet with the head of the new PID (Primary

Immune Deficiency) Clinic - Dr. Jordan Orange. I emailed him last

summer about 's condition (I met a collegue of his on the train

who told me about him) and he had been looking to meet with us then,

but because had been through so much already I decided to wait

until after his 2nd birthday to be seen. Now we should be able to

get an accurate " picture " of his immune system, a more accurate dx,

and a treatment plan that will hopefully give us a better quality of

life without constant illness - (Yes - the sinus infection/URI that

started shortly after Christmas is still with us - UGH!)

Anyway, when dealing with a " PID kid " the experts have told me that

a true evaluation of their immune system cannot be done until at

least 2. So far the only " real " dx we have had is Selective Iga

def, and then possibly THI, but because he was dx so young, neither

of these are really an accurate picture of his immune system. His

docs are saying that with the increased infection rate, no response

to titers, low Iga and IGG we are probably looking at CVID - I hope

not, but at least there is a treatment plan for that.

CHOP has been the only hospital to give us HOPE! We will also be

meeting with the ENT surgeon about 's pending surgery - I am

hoping can be scheduled to have this surgery there at CHOP

instead of here in VA. I guess we will see. Anyway, we will be

staying in the RMH ( Mc House) for a minimum of 2

nights, and hopefully get some much needed answers and resolution to

2 LONG YEARS of illness! I will update when I can. Please keep my

sweet 2 year old (who can now sing his entire ABC's - YEA! ) in your

prayers. Sorry this post is so long...God Bless you all!

OOOOO HUGS from OOOOO

__________________

" Mom2lil "

aka Amy

Mommy to (2 years old, Primary Immune Deficiency

Disease (PID), GERD)

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