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Re: immune deficiency

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CW,

My son (who has been a patient of Dr. G for almost 4 years now) has NEVER

shown high viral titers, but there can be other indicators of viral

involvement aside from the titers. One is a low WBC count (and that can

just mean consistently at the low end of the normal range... it doesn't have

to be off-the-charts low). Another is a high monocyte count. Another is

motor issues. My son was hypotonic (low muscle tone) when starting with Dr.

Goldberg. Within months of starting Valtrex, his muscle tone normalized.

He also developed normal reflexes where he had had NONE. I remember a local

Dr. who had followed him for the motor issues being blown away by this. She

said " THIS JUST DOESN'T HAPPEN! " . She was very impressed. And just in case

that was a fluke, when my younger son had basically the same thing happen

when he started antiviral, that proved our case.

I certainly would think your daughter could be a " " case, especially

since she has other immune abnormalities.

Caroline

On 11/9/05 7:04 PM, " carol wright " <butterflycw@...> wrote:

> I have a question about immune deficiency. I can't determine if our

> child actually fits into this category. She does not have any high

> viral titers to CMV, herpes, EBV, rubeola, strep, etc. However, she

> has almost non-existant NK cells and has low secretory IgA and high

> IgE. This is somewhat confusing because part of her profile says that

> she does not fit the immune deficiency, and the other part says yes.

> Can anyone help me with this> I would really appreciate your response.

> God bless,

> CW

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  • 2 years later...
Guest guest

So sorry your son has had such a tough time. His history sounds

typical of someone with an immune disorder. I would expect the

immunologist to do additional blood work, looking to confirm the

previous findings and checking various types of cells that are

involved in immune responses. He may give pneumococcal and H.

influenza immunizations (even though your son would have had those in

infancy) to check the antibodies to those bacteria before and several

weeks after the injections, looking to see if your son produces the

antibodies after exposure to the vaccines, which he should. It is

completely safe to receive these vaccines even though he has already

been fully immunized. He will also probably give him a skin test for

yeast, to test a different part of the immune system.

IVIG (intravenous IgG)treatment may be recommended if the antibody

tests show either low levels of IgG (a specific class of antibody in

the same way that IgE is a specific class) or IgG subclasses

(=different types), or poor function of the IgG part of the immune

system in responding to important bacteria like H. influenza and

pneumococcus, even if blood levels are normal.

IVIG itself consists of antibodies purified from donated human blood.

It is a very safe preparation that has been in use for many years.

It's often given monthly, more or less depending on the individual

patient. There is now a similar preparation available that can be

given by injection just under the skin instead of intravenously,

which is much less cumbersome and much less expensive than IVIG

treatment. Either treatment should be covered by insurance.

I hope the immunologist can determine what is causing your son's

problems and then treat him successfully. Is the immunologist out in

the community or on the faculty of a medical school? Please keep me

posted and feel free to email, since this is not Xolair-related.

Fran

--- In , " " <shuttsgirl@...>

wrote:

>

>

> Fran,

>

> You've posted before about being diagnosed with an immune problem

that

> required IVIG. I have a question for you. My 9 year old asthmatic

son

> has had frequent sinus infections for the last 11/2 years that

flare his

> asthma badly leading to evil candy (9yr old+evil candy=frazzled

mommy!).

> His asthma doctor did some lab that showed he had no antibodies to

> pnuemococcus or H influenze bacteria. He referred us to a pediatric

> immunologist today that we will see in 2 weeks to see if there is

some

> kind of immune problem. He mentioned something about IVIG if that

> turned out to be the cause of all the infections.

>

> What will the immunologist be looking for? I assume some kind of

labs?

> I want to be prepared before we go for what to expect. We've got

to get

> some kind of control over these infections because that seems to be

what

> triggers his really bad asthma episodes. Allergy testing was

negative

> and Sinus surgery in November to improve drainage has not helped. I

> don't know very much about immunology other than IgE testing for the

> Xolair and would appreciate any comments you might have.

>

> Thanks,

>

>

>

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Guest guest

Thank you so much for your comments-that was extremely helpful and what

I needed to know. The immunologist is affiliated with the large

children's hospital in our area. It is a teaching site for the area

medical schools, so I'm hoping they are familiar with complex problems.

I will let you know privately how it all turns out.

Thanks very much,

> >

> >

> > Fran,

> >

> > You've posted before about being diagnosed with an immune problem

> that

> > required IVIG. I have a question for you. My 9 year old asthmatic

> son

> > has had frequent sinus infections for the last 11/2 years that

> flare his

> > asthma badly leading to evil candy (9yr old+evil candy=frazzled

> mommy!).

> > His asthma doctor did some lab that showed he had no antibodies to

> > pnuemococcus or H influenze bacteria. He referred us to a pediatric

> > immunologist today that we will see in 2 weeks to see if there is

> some

> > kind of immune problem. He mentioned something about IVIG if that

> > turned out to be the cause of all the infections.

> >

> > What will the immunologist be looking for? I assume some kind of

> labs?

> > I want to be prepared before we go for what to expect. We've got

> to get

> > some kind of control over these infections because that seems to be

> what

> > triggers his really bad asthma episodes. Allergy testing was

> negative

> > and Sinus surgery in November to improve drainage has not helped. I

> > don't know very much about immunology other than IgE testing for the

> > Xolair and would appreciate any comments you might have.

> >

> > Thanks,

> >

> >

> >

>

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