Re: Do Parents Listen

January 12, 2003

Hi again Gaylen,

While we only started with Dr. G in October, he doesn't have a clear answer

as to why my son's IgE is so high, but it is obvious to him that it is part

of a dysfunctional immune system. When we had it tested in the fall of

2001, the IgE was at 3600, the only changes we made to bring it down to 2800

was the GFCF diet. I am tending to think that it is allergies, although he

doesn't look, or act like an allergic kid...No puffy eyes (when not on

current medication), no histamine reactions, no eczema etc...Dr. G said that

in the 80's he had a 17 year old boy with an IgE of " 800 and something " and

sent him to UCLA for a full work up...Talk about thorough. My local ped

didn't even acknowledge that there was anything wrong and told me that

everything was " normal " in my son's bloodwork, until I received a copy of

everything myself. Makes you wonder and proves that only we can be the best

advocate for our kids and how important it is to stay on top and educate

ourselves about every little thing where there health is concerned.

By the way Gaylen, I am not familiar with an allergy to myelin based

protein. Would you mind explaining?

Thanks,

Lori

Re: Do Parents Listen

In a message dated 1/11/03 2:47:14 PM Central Standard Time,

LB@... writes:

> In any case, his immune panel is all over the map. High HHV6, IgE

> at 2800 (norm is 0-60)

Wow that is high. My son's IgE was 609 with a ref range of 5.8-216 which

seemed terribly high. I'm curious to know what Dr. G has said about the

high

IgE. For your son, does he feel it is all allergies or that it could also

be

related to the high HHV6? I wonder if anyone has asked if a high IgE

could

be related to an autoimmune problem like allergy to myelin basic protein

or

if it is always inhalant or food allergies?

> I strongly believe that by taking away the physical abnormalities and

making

> his blood work at least " normal " , we will not be tampering with his

> brilliance, but giving him an opportunity to let it shine.

>

Makes sense to me. Actually, everything we've done to help my son has

only

helped him display his brilliance and unique personality even more.

Gaylen

January 12, 2003

In a message dated 1/12/03 10:56:42 AM Central Standard Time,

chemer@... writes:

I'm not sure who you were talking to with this last message but I imagine

most of us have taken into consideration recommendations and information from

a number of sources -- including Aspie and Autistic adults. Anyway, just

wanted to comment on the following:

> >>No amount of drugs can change a Neurological Condition.

>

Actually, if a virus, chemical/toxin or general immune system problem is

causing a neurological condition or making it worse, the appropriate

treatment (or drug) can indeed change it. What you need to realize is that

is treating verifiable medical problems with medication, not just using

medicine to supress symptoms. This treatment is different from that you'd

get from a psychiatrist. It is treating medical conditions that are either

adding to or causing problems.

> >Because short of brain surgery it is impossible to change the brain once it

>

While it is true you cannot change brain structure once it is formed, there

is ample evidence to show that you can change nerve transmission and the

amount or parts of brain you are using. They've done remarkable research

with stroke patients and seizure patients where they've had to remove half of

the brain. With proper retraining, it is very possible to change brain

function. I read quite a bit about this in the early stages of my son's

challenges. I find it fascinating how little we know about the brain and how

it is very possible to change it's function at any age.

Also, recent research shows that there is a second " pruning " or reworking of

neurotransmitters in the teen years leading to the possibility of rewiring

the brain long after the 0-5 formative years. These researchers felt that

this second reworking could be part of the reason for teenage year

difficulties. The research also talked about mute people learning to talk

during the teen years and those who couldn't read learning to read.

While this may not be what you were meaning. I did think it important to

mention. One thing to keep in mind here is that by treating our children, we

are not trying to change their unique personalities or take away any of their

special traits, but rather just make life easier and healthier for them.

Gaylen

January 12, 2003

Hi Steve,

The virus affecting my son is HHV6, which comes from exposure to roseola

coupled with an inability to fight it off properly due to inherited immune

system problems. If your body is unable to fight off viruses like these --

due to immune system problems -- it begins to attack part of your brain. We

know it has affected my son's motor function since shortly after he was

exposed, he was unable to use his right hand and dragged his right foot until

many years of therapy work on the right side of his body. This followed a

two-week upper respitory illness. Writing and any motor task has been very

difficult for him and we've had to work very hard to regain motor function.

I'm not sure what other areas are affected by this virus. We're very early

into treatment so only time will tell us what other things are affected.

Since his body is unable to combat the virus on its own, you do not see the

typical fevers and other obvious viral signs after the initial exposure. He

does have a chronic stuffy nose and some strange eruptions where his ear

meets his head that tend to blister and split. Otherwise, the other symptoms

appear to be mostly brain-related.

Anyway, I don't expect my son to be cured of all differences with this

treatment. But I have found that as we address health issues, he is much

better able to handle the world and express himself better. My main goal is

to help his body be as healthy as possible and help clear out as much as

possible that is affecting his brain and making it harder for him to focus

and express himself. In his case, his immune system is very overactive --

opposite to what happens in AIDS so that instead of not reacting to illness,

he is reacting to many things that are not really harmful substances -- plus

he is continously fighting this virus to keep it under control. This keeps

his body in a state of over-alertness, requiring a tremendous amount of

energy and making him very weak and have cycles of not feeling well. Dr.

Goldberg is treating the virus with Valtrex and will later address his immune

system to hopefully make it less over-active.

In the few weeks of Valtrex, he has had some die-off periods where the virus

flares, causing him to not feel as well. But he has also had nice

improvement in his ability to write, which has always been so frustrating for

him. I feel if we can remove as many frustrating challenges as possible for

him then he will be free to really be himself and have a happier life.

Gaylen

January 12, 2003

There are several immue problems with high IgE being part of them, here is a

link to one of them

http://www.1uphealth

com/health/hyperimmunoglobulin_e_syndrome_diagnosis_tests.html

Usually it's called hyper-IgE when you have too high IgE, you can find lots

of information in search engines if you put hyper IgE in the search. Hope

that helps.

Diane, Mom to Kody

Please feel free to visit my website for parents of children with multiple

special needs :

www.geocities.com/schmidtzoo/SNAK.index.html

-- RE: Do Parents Listen