Re: Re: New Member - Kim

[Guest guest]

Kim,

Hi, thanks for responding. I am not exactly sure how this site works or

if I am doing it right. So far, the Drs. thinks that (4) has XLA. He

had his first IVIG two weeks ago. All his IG levels are extremely low. The

latest blood work came back saying that he had B-Cells (they tell me the

reference range is 200-2000 and his were 341) and that although he had no

antibodies to his immunizations, his t-cells still reacted to tetanus when

exposed??? He has two Drs. that disagree. The original Dr. still stands by

the XLA but the Dr. working with him (who is an immunology fellow) says she

thinks it sounds more like CVID. The question I have is can you have

B-Cells and still have XLA. They are doing the genetic tests next Thursday.

He is currently being evaluated at children's hospital. I assume that will

tell us for sure. I did here from you on the IF site and I think it was you

that told me about this site. THANKS.

Re: New Member - Kim

> Hi Kim

>

> Welcome...I also have a son with x-linked agammaglobulinemia. He's 6mos

old and has been receiving IVIG since May. I think I may have emailed you

at the IDF website. Pardon if I sound redundant, but what have you found

out so far? Is your son on IVIG yet?

>

> This is a fabulous group. They really care about what is going on and

helping out. Ask questions, add comments, and enjoy the support.

>

> Kim, mom to Linz 11 and Graham 6mos (Bruton's)

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>