RE: Re: Low IGG but not sick

December 4, 2010

This sounds like my daughter. She has low total IgG and high IgA. We are

watching her, because she is never sick. He called it a " sluggish " immune

system, but for Insurance purposes, it's Hypogammaglobulimeia. Good luck.

From: monstersmom@...

Date: Sat, 4 Dec 2010 14:14:53 +0000

Subject: Re: Low IGG but not sick

Hi Sue and ,

Thank you so much for your responses. I really appreciate it.

I do trust his doctor very much so. He is wonderful and always has my son's

best interest at heart. I do plan on asking what specific diagnosis he has when

we see the doctor. We have just been calling it " immune deficiency " for a year

now. I would like to know specifically what it's called.

I did know about the malignancy issues. it was mentioned by another one of his

doctors as being a potential problem. One of the questions I have when I see

his diagnostic doctor is will the chances of cancer decrease once he starts the

infusions.

The other issue I have is ' immunologist is not 100% on board with starting

the infusions. His diagnostic doctor was suppose to discuss everything with him

this week and get back to us. SO, hopefully on Monday we will have an answer

one way or the other with some good reasoning for both cases. If not, we don't

see the immunologist until last January, as he's the only allergist in the

entire hospital and he has a pretty extensive wait.

And just to clarify, I don't doubt that he needs the therapy or that he has an

issue, I'm just perplexed at how low everything truly is and the fact the he

never is sick. The children I know who get the infusions are constantly in the

hospital for infections and viruses, but that's just not my son (knocking on

wood as I type this!).

Thanks again for both of your help!

Missy

Mommy to , my 2 year old Monster with VACTERLS Association & PDD-NOS

December 5, 2010

Hey,

My son has Selective IgG and does SubQ. Our Immunologist tested the rest of the

family and found out my Mom, Tori, and I have low IgG. We opted to monitor Tori

and if she became sick often, we would start infusions then. Let me warn you,

our Immun thinks outside of the box. His thought was, she's not sick, we can

wait.

Hope this helps, mom to:-14-Selective IgGTori-10-Hypogam.

From: monstersmom@...

Date: Sat, 4 Dec 2010 17:55:16 -0500

Subject: RE: Re: Low IGG but not sick

Thanks ! Has she started infusions already? Just curious how you

found out she had the low immune system since she was never sick. We found

my son's when he was having blood work for Celiac Disease and his latex

allergy last year. Never would have known otherwise.

Missy

Mommy to , my 2 year old Monster with VACTERLS Association & PDD-NOS

Re: Low IGG but not sick

Hi Sue and ,

Thank you so much for your responses. I really appreciate it.

I do trust his doctor very much so. He is wonderful and always has my son's

best interest at heart. I do plan on asking what specific diagnosis he has

when we see the doctor. We have just been calling it " immune deficiency "

for a year now. I would like to know specifically what it's called.

I did know about the malignancy issues. it was mentioned by another one of

his doctors as being a potential problem. One of the questions I have when

I see his diagnostic doctor is will the chances of cancer decrease once he

starts the infusions.

The other issue I have is ' immunologist is not 100% on board with

starting the infusions. His diagnostic doctor was suppose to discuss

everything with him this week and get back to us. SO, hopefully on Monday

we will have an answer one way or the other with some good reasoning for

both cases. If not, we don't see the immunologist until last January, as

he's the only allergist in the entire hospital and he has a pretty extensive

wait.

And just to clarify, I don't doubt that he needs the therapy or that he has

an issue, I'm just perplexed at how low everything truly is and the fact the

he never is sick. The children I know who get the infusions are constantly

in the hospital for infections and viruses, but that's just not my son

(knocking on wood as I type this!).

Thanks again for both of your help!

Missy

Mommy to , my 2 year old Monster with VACTERLS Association & PDD-NOS

December 5, 2010

Waiting until they start getting sick is standard practice as far as I know, my

4 yr old was dx'd with CVID at 1 year and we keep monitoring because she's been

pretty darn healthy the past 3 years. UCLA policy won't allow our immuno to

order Ig for her until she's no longer stable. They said its to help keep supply

available to those who need it NOW vs those who are holding there own without

for now. Makes sense, my 10 yr old does need it without a doubt but the 4 yr

old? No, she's doing ok without it.

________________________________

From: laura smith <iamlaurasmith@...>

healyh < >

Sent: Sun, December 5, 2010 6:20:11 AM