Some Feedback Appreciated on a few topics

[Guest guest]

Dear friends,

Our son has made such dramatic progress---specifically with speech

since we discovered the protocol and put him on the diet in

early January 2003. First, his receptive skills really perked up and

then in February he started really expanding his babbling. In March,

he was making true word approximations and in April he started saying

single words for the first time. Since then, our entire speech

therapy/OT team has been floored by the rapid progress he has made

with expressive speech. He is now using three word sentences ( " I

want a cookie " ) prepositional phrases ( " in the water " " on the

chair " ) and action verbs ( " he's running " ). He also is using these

words/sentences appropriately and in the correct context. We are

thrilled and amazed at this progress as well---although we know he

still has a long road to travel.

In May we had our first appointment with Dr. G and he gave us much

hope for our son's future---given he age (2 1/2) and the social

connectedness he has always demonstrated. Thank God for this man's

existance. As I promised to God when we first found out about ,

I have made it my calling to help any child I see who has been

mislabeled by the system like our son. I have since met three other

children/parents who just screamed " " symptoms and ambushed them

outside of my son's therapy setting. I carry the packets with

me in the car and my speech tX/OT now gives it out to any kid who

just doesn't fit the PDD/Autism label. Unfortunately, Dr. G. is on a

hiatus now with new patients---but I tell these parents to start the

diet and labs to get going with it.

Last month, we started our first trial with Valtrex. We had some

bumpy spots along the way---not because of side-effects but because

our son does not tolerate swallowing pills and would gag no matter

how small I crushed the pills into his food. He even stopped eating

for three days. Our solution---getting the Valtrex put into a liquid

form---which our insurance company would not pay for because the only

pharmacy that makes liquid compounds is not on the plan. Four weeks

worth of the stuff cost us $1,000. We just put it on the credit card

and have no idea how we will pay it off.

As for the Valtrex---we honestly have had trouble telling Dr. G. if

we see any " true " improvements with the Valtrex versus the normal

progression of improvements one would expect as he learns. We do

think he seems more energetic/ " brighter " ----but also a bit more

hypermotoric on the stuff. Plus, he has always had

a " perserverative " focus on numbers/letters that tended to be in his

head prior to speech and now is coming out in verbal spurts

throughout the day---especially since the Valtrex (reciting the

alphabet as he runs around the house, counting when he's board, in

his carseat or as he falls asleep.) No other major side-effects or

dramatic improvements---nothing like what we saw with the diet

changes.

Here are a few questions for all of you wise parents out there.

Please offer any tips if you find a spare moments to respond---you

always give such great advice.

1. For those of you who have children with a " fixation " or strong

love of numbers/letters---is it still best to " ignore " the behavior

or try to be firm and " stop it. " This has always been a strength of

his (knows all his letters/numbers/spells words/memory reader). We

don't want to shame him---but it is the one behavior that really sets

him apart from his peers and admittedly embarrasses us. Other kids

are starting to ask, " why does he count all the time? " It's almost

like the Valtrex " brightened " everything a bit---including his little

obsessions.

2. We are going to take a short break from the Valtrex, per Dr. G

and see if the absence of it helps us to better see how it affected

him. Then, we will be starting the Famvir. Did any of you have

minimal success/change with Valtrex but bigger changes with the

Famvir??

3. I understand it is also a pill form which means we will have to

pay big bucks to get it converted into liquid so our child will take

it. Have any of you had to do the same and make these drugs into

liquid?? We are fighting the insurance company since the will cover

80% of the cost for the valtrex in pill form---but not the liquid

from this one pharmacy who does compounding. Of course, you also

don't want the insurance company looking too closely at all

this " " stuff and wondering why this 2 1/2 year old has had so

many labs and is on anti-virals.

Thanks for your patient ears and hearts.

Leahy