Lymphnodes

[Guest guest]

I am having a hard time. Seems quiet in here lately. A few months

ago, it was brought to our attention that enlarged lymphnodes is one

of the problems associated with CVID and Maggie (my 3 year old) has

always had an enlarged tonsil on the right, but I never noticed

anything else. Even on IVIG, she is still getting tired easily and

has circles under her eyes. She is gaining weight just fine...but

also still gets diahrrea easily and very frequently.

This past week, I noticed that she has a very noticeable lymphnode

along the front of her neck...next to her trachea mid neck on the

same side as the inlarged tonsil. She also complains of being cold

alot. Now I am very worried. For months, I have asked the

immunologist and the hematologist if we are sure we should not be

worried about anything else. I am sooooo petrified that Maggie has

developed Lymphoma and I cannot get anyone to talk to me or even

check her. I have tried to call her pediatrician and he is not

returning my calls. I have sent e-mails to her immunologist and,

while he addresses some of the things I ask about, he has not

answered my questions about this. I have brought up her dwindling

white cell count (3.2) and her nutropenia and low lymhocyte count,

but he says he will look at it and never says anything. We cannot

get the lab results from blood work that was ordered 3 months ago.

AND HAVE I SAID I HATE LIVING IN LAS VEGAS?????!~!!! I am so

frightened for her and I feel like the only thing I can do is start

insisting. My understanding is that there should be some sort of a

scan done to take a closer look at her lymphatic system...including

the lymphnodes that are deeper in her abdomen that we may not

notice. What should we be doing???? As all of our children our

special to all of us...it would crush me if my suspicions are

confirmed. I am angry....I am frightened and I don't know what to

do. HELP>

Terri (mom, Molly (5) and Maggie (3) have CVID with B Cell disorder.