New to group intorduction.

[Guest guest]

Hi Group,

First of all thanks for the welcome letter. Second let me introduce myself

and my son.

My name is and I am the mother of 3 children, Shelbie 8, Mandy 3 and

1. the reason I joined this group is because of my son. He was born

11 weeks early last May and he has several problems. The one that brought

me to join this list is Hypogammaglobulinemia. He was just diagnosed with

this last month and he received his first IVIG on the 20th of May and will

get the next one on the 10th. On the 26th of May he had a central line

(Broviac) placed to help aide this because his little veins are shot from

being stuck so many times in the NICU and afterwards. So far so good with

it. It is an external port which is a little inconvinent, but it beats him

being stuck 10+ times to get necessary blood work and IV's. I guess I

should tell ya how we came to find out about this problem. It started 10

days after left the NICU last July. He broke out in this horrible

rash that over the next several months developed ulcers and impetigo. We

went through the routine at Derm and they had no clue after 4 months and a

biopsy. Then we saw a peds allergist/immuniologist at the base (my hubby is

in the service). He refused to do anything saying it was simple excema

which only made me mad. I have 2 other kids and have done daycare in my

home for 10 years, I know excema when I see it. But we felt stuck as did

his pediatrition until he got sick last March and I ran into one of the

people from Tri-Care (helath insurance we have) and she said we could get a

second opinion on it. Well when I called to make the appointment they were

booked for a month, but asked what the problem was. After telling them,

they said bring him in in 2 days. Well that is when we found out that he is

allergic to all the food he was eating and more and they took blood test. A

couple of weeks later we returned and we were told about the

hypogammaglobulinemia. His T and B cells are ok according to the doctor

which I guess is a good thing. The only thing I know so far is, is that he

will need the treatments, IVIG, monthly and that we will not know for a

while if it is the transient or perminant kind. has been through a

rough time and this is just the last thing I would have expected him to

have. I can talk circles around all of his other problems but this one

confuses me. I don't understand how he got it or even if there is a cause.

And if it is perminant, does it get worse or better? Is there anything I

need to be paying close attention to? Are there any issues I need to know

about? How does this affect people in the long run? Well I will stop with

those questions for now because if I ask them all now, you may go blind.

Well, if anyone is interested in knowing the whole story on , you can

find it at http://home.talkcity.com/CarpoolLn/oryjinil/ .

God Bless