Re: question about CHARGE immune system

[Guest guest]

---Hi, when I was younger I was very prone to getting sick. A lot

was due to asthma and aspiration (fluid getting in my lungs causing

colds and pnemonia.) I dont know too much what can be done except

that I out grew it a bit. Maby see if there are swallowing issues.

Also I started taking multi vitamins every day and take extra

vitamin c and thats shortened the durration of most of my colds.

I think chargers do have a weaker immune system but I dont know too

much about it myself. It may be related to all the other health

issues associated with CHARGE syndrome.

Hugs, sorry this isnt much help

Chantelle

[Guest guest]

Rochel,

That is acutally a very complicated question. A few children with CHARGE have

DiGeroge sequence (NOT due to the 22q deletion),

which is a combiantion of complex heart defect and thymus abnormalites. Those

children do not produce as many t-cells (infection

fighting white blood cells) and therefore have significant problems with

infections. Other children appear to have a normal thymus but

have low t-cells anyway. And others have normal t-cell levels but still don't

apepar to fight infections as well.

It's pretty clear to most of us that kids with CHARGE seem to get sick a lot and

take a long time to get well. We don't really

understand why that is. There seems to be somehting unusual about hte immune

system, but we don't have a handle on it. If your

child has been sick a lot, you might ask the doctors to test t-cell levels or

other markers for the immune system.

Meg

Meg Hefner MS

Genetic Counselor

St. Louis MO

meg@...

> Hi,

>

> What is it about CHARGErs' immune systems that is a problem(s)? Is

> it something that can be tested for or do we just have to wait and

> see how she responds to getting sick? Nobody at the hospital has

> discussed this with us yet.

>

> Rochel

[Guest guest]

> Meg?

> could part of their troubles be because of how much antibiotics they are

on the first part of their life in trying to handle all the

complications. aspirations ect ect they have to have fixed?

>> KayRena mom of wesley 10 charge Jake 8 tristen 6 zach 3 and one one

the way

>

KayRena,

I don't know the answer to that. Being on antibiotics shouldn't directly affect

a child's immune system. We are probably all aware of

the concern about antibiotic-resistant organisms and the push to notover use

antibiotics... If a child is on antibiotics a long time, there

is a chance he or she could end up harboring resistant bacteria which don't

respond well to antibiotics. But that is the response to

medicine, not the body's immune response. The impression I get from families is

that most doctors do the " wait and see " approach to

how the immune system is doing. Sorry I don't know more about this area.

Meg

Meg Hefner MS

Genetic Counselor

St. Louis MO

meg@...

[Guest guest]

> Meg?

> could part of their troubles be because of how much antibiotics they are

on the first part of their life in trying to handle all the

complications. aspirations ect ect they have to have fixed?

>> KayRena mom of wesley 10 charge Jake 8 tristen 6 zach 3 and one one

the way

>

KayRena,

I don't know the answer to that. Being on antibiotics shouldn't directly affect

a child's immune system. We are probably all aware of

the concern about antibiotic-resistant organisms and the push to notover use

antibiotics... If a child is on antibiotics a long time, there

is a chance he or she could end up harboring resistant bacteria which don't

respond well to antibiotics. But that is the response to

medicine, not the body's immune response. The impression I get from families is

that most doctors do the " wait and see " approach to

how the immune system is doing. Sorry I don't know more about this area.

Meg

Meg Hefner MS

Genetic Counselor

St. Louis MO

meg@...