It can get better

[Guest guest]

I know that we all have had our dark moments. Probably more than we care to

think about. It isn't hard to feel like you're at odds with practically

everyone. The public in general, the school system, and the professionals

because there is no consensus on what is really going on with our children.

We struggled for so many years, trying to figure out what was going on with

my younger son. He was five before I heard any mention of a possible immune

link. I'll always be thankful that I came home early one day, turned on the

T.V., and heard Dr. Rapp discussing some cbildren that had so many things in

common with my son. Although the treatments weren't the answer for my

children, it's what convinced me that the immune system was. That is what

kept me going, searching, seeing different doctors, even during those times

when I wondered if the roller coaster ride would ever end. (or would I have

a nervous breakdown first)

This is crazy. Parents shouldn't have to deal with this on top of

everything else. I would do it again, only because if I hadn't, I would

never have gotten to the point we are now. I might not even be to the point

of believing in the immune connection, or even heard about Dr. Goldberg and

. My younger son is 13 now, he was 9 by the time we found Dr. G.

If I hadn't experienced what I did with my younger son, I probably wouldn't

have been able to help my older son. He made it through the younger years,

but the genetic part caught up with him by the age of 12-13. (I also have

CFS) Most likely a bout with Epstein Barr, hormones kicking in, etc.

combined to push him over the edge into .

He was past the acute stage and in High School before he began treatment for

. The scarey part is that he also would have slipped through the

cracks. He was no longer sick all the time and missing school, yet his

pre-illness grades of A's and B's, had never returned and he had remained a

C,D, and F student.

Even though he didn't have the strong immune/viral markers like his younger

brother, he had the same issues keeping him from achieving academically. He

was foggy and his cognition was off. Probably the most dramatic change

concerned math. He had to take summer school math for three summers because

he was having a hard time concentrating and grasping the material. He was

put on the protocol during the summer prior to his senior year.

Imagine how puzzled his teacher became when this kid is all of a sudden

doing work that earns him an A???

My hope is that we can somehow get everyone to understand that this is not

just about autism. There is a whole spectrum of disorders that we need to

be able to identify and treat. We can either spend alot of time and money,

trying to find a cause, even though it's unlikely there is going to be one

thing that can be singled out. Or we can focus on what everyone seems to be

agreeing on....the immune system is malfunctioning.

Wouldn't it make more sense to begin by proving this is medical first?

With immune profiling and Neurospect studies, we can do that. Then we would

have markers, have something that can be measured and be able to document

what exposures are throwing these children into a tailspin. Even more

importantly, the possibility of preventing it in the first place.

Do we keep fighting the system, or do we try to work within the system to

prove this. Regardless of what anyone thinks about our medical system, that

is the system we have. If we don't work within it, we'll go on forever

working outside of it, and remain in this limbo without clear answers. We

will also be waiting alot longer for direct treatments that could prevent

other parents from going through what we have all suffered through. We

could also have those direct treatments for our own children and many

parents who are also dealing with these immune disorders.

Cheryl

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