would I follow the same course again?

[Guest guest]

Hello!

A newbie asked if we had a choice to make would we chose again?

and why?

Our son was born in 1995. In 1996 my husband came down with Guillian

Barre Syndrome

(think: Polio light). After probing Drs and specialists and giving them

the research I had,

they assured me that it would never affect our son. They were wrong.....

regressed between 18-24 mths losing almost all speech while

behavior went up.

There were too many sleepless nights because his internal clock wasn't set.

He wasn't a happy child. The the rude diagnosis by the local school

organization came

and the race was on. We started with ABA. Our only regret was that we

ended it

after 3.5 yrs due to costs (it was coming from our pockets and fundraisers).

We started with a local DAN Dr. While overall a waste of time, it was

the only thing

we had access to at the time. He didnt understand the results of the

tests he did.

He did introduce us to the GFCF diet but the supplements

and B vit shots were money flushed down the drain.

Then a local family with 3 affected children introduced us to . It

just so happened

that a 2-3 day conference was going to happen in Bethesda MD that

year (1999)

I found the money to go and wow! finally! someone who understood what

was going on!!

From Drs Klimas to Galpin to Fosnot to Hyde to Mena to Goldberg.

Dr Goldberg was coming to Bethesda at that time and we were able to get

an appt.

Valtrex took my son's gaze from here and there to directly LOOKING at

something.

After the neuroSPECT scan, the SSRIs were introduced. We've had our ups

and downs

with this class of meds. It would've been nice to have had some

research done on this class

of meds to aid the selection process. But the sleepless nights stopped

and he

was a happier little boy. Kutapressin was introduced (God bless this med !!)

Do you know what it's like to have an affected child actually

participate in Christmas -

to open presents and see the joy on their face?

We've had a few good months and a lot of bad years. But currently, we're

on a regiment

of meds that are showing promise. If we could just get the local school

system

to cooperate and do their job .... which includes recognizing parents as

valuable assets

instead of squeeky wheels ...

Would we do again? yes

why? because in our case and based on my research, it was the only thing

that made sense.

What does your instinct say? If chelation was the cure for this

illness, why aren't more

children appearing on the front page? Because parents want fast cures

... just like

fast food .. fast cars and cable. isn't going to work over night.

And it isn't going to be perfect. But it makes sense when you do the

research.

Now I will warn you that Dr Goldberg can be difficult to work with ....

but compared with our local school system .....

Doris

- land