Re: Sensory Issues and some positive feedback

March 21, 2002

,

How is your son's receptive language? My daughter has a doctor outside of

Chicago. His name is Chez. She was almost nonverbal until she was

five. Dr. Chez did a 24 hour EEG and found that she had Landau-Kleffner

Syndrome variant, a type of seizure disorder. He put her on an anti-

epileptic and she got 70% more language than she had.

Melyssa

Re: Sensory Issues and some positive feedback

Dear

Thank you for sharing your story with us. I admit I am guilty for not

writing as often as I should and new parents need to hear about our

stories.

Mine is a story of slow but definite progress. My son who just

turned 9 has been with Dr. Goldberg for four years. is still a

non verbal child but he is doing very well. His original diagnosis of

autism with possible severe mental retardation offered us no hope. But

God in his infinite mercy put us in touch with the right people.

started ABA at the age of 3 . We lost a year because we had a

consultant out of Wisconsin who said they were Lovaas certified but

their techniques were not. became prompt depended and memorized

rather than learned the programs. A year and a half later we had to

start all over again with a new consultant from New York About that

time I had the opportunity to hear Dr. G speak for the first time and I

started researching his theory.

When was about 5 and 3 months Dr. G. put him on diflucan. 2 weeks

later started to sleep all night. He used to sleep at 11:00 till

1:00 then wake up at stay up all night till about 5:00 till 7:00. Night

after night, then he started to sleep for about 8 hours straight, it was

a miracle.

One month later Dr. G introduced vultrex and hit the walls for

about 3 weeks. His body was fighting the virus and he was very restless

but as a result of the medication 's face cleared up. No more

redness around the lips, the circles around the eyes became lighter and

his appetite increased. One month later started on prozac (2 mg),

a week later learned to work on the computer. and I mean he

learned everything in one day, from clicking, to double clicking, to

holding the key down, to changing my folders around. We were struggling

for six months to teach him to move the mouse to no avail. (IS it a

coincidence?) I don't think so. was becoming more with it and

with us.

At the age of six, started K4 at home and at the age of 7 I

decided to keep home schooling him. There was nothing offered for him by

the school system and I was getting frustrated with ABA as it took it

toll on us financially and emotionally. By the age of 8 learned

to read, write and do math. I took him to be tested by a psychologist

since it had been a while since his last test and the man very nicely

informed me that will be done in 30 minutes (autistic children

don't last longer). Well, 2 hours and 30 minutes later the man comes out

shaking his head: " Your child is so intelligent, he can't talk but he is

something else. Who ever told you that your son is autistic with mental

retardation is wrong. Your son has a communication disorder. " If he only

knew.

Today is on Celexa, diflucan, and vultrex. He is in a regular 1st

grade classroom with his mom as his shadow, he still doesn't use his

words but that does not mean that he will not. His grades are A across

the board except for his cursive handwriting ( He made friends, he is

happy, he goes to Sunday School, he traveled across the atlantic and no

one on the plane suspected anything except the hostess who thought

could not speak He is now taking his SAT and the teacher is

already talking about 2nd grade. He has an older brother who plays with

him basketball, soccer, baseball. He has a father who loves him more

than life itself. He has a mother who is going back to school with him

and no regrets whatsoever. He has a doctor who is fighting for him. And

most of all He has a loving almighty God who saw him through the rough

waters and will see him safely till his course is done.

Parents don't give up!

_ Mercy

Dan Little wrote:

>Hello to all of you fighting for your child's recovery,

>

>My son is 6 1/2 years old and we removed milk and whole wheat in

September and have used Valtrex for a few months. He has made some

improvements lately, one being a decrease in noise sensitivity. Hair cuts

have always been traumatic. The last time I got the clippers out, my

husband was not home to hold my son. He cried a bit, but I told him he had

to sit (he is nonverbal) and he did. It was our quickest hair cut yet.

Instead of disappearing when I get the electric toothbrush out or the

vacuum, we can now do these chores like a game. I can chase him with the

dust buster and he laughs. He is also going down the big slides. In the

past he would climb to the top, but go back down the ladder--especially the

twisted or covered slides. Now he goes down them all and he laughs. I took

him to the theatre to see Ice Age. Those previews are sooo loud. He did

fine. He even laughed at the movie. ! On our recent trip to see Dr.

Goldberg, we took the Amtrak train. The giant train pulled into the station

with the whistle blowing and the brakes squeeling. He buried his face in my

shirt, but no real problem. This was an 18 hour trip. He not only did

fine, he loved it. Our trip to the doctor ended up being one of our best

mini vacations we've had.

>

>On another note about reactions to medications. My son was having what

looked like psychotic episodes shortly after starting the Valtrex. We stuck

it out for a few months and then stopped giving it to him. The episodes did

not stop. We took him out of kindergarten. The episodes did not stop. I

remembered that we had changed pharmacies for another medication he takes.

It turns out that they used a different generic brand of the medicine. The

day we switched back it was noticeable that he was much better, however,

some of his crazy behavior had become habit and took about a month to lose

some of his aggressive reactions. We have since put him back on the Valtrex

with no negative reactions. I realized now why Dr. Goldberg changes things

slowly. Had I not backtracked on every change, we may have continued to

think the Valtrex was the culprit. Another note about Valtrex. My regular

pediatrician is n! ormally reluctant to dispense medications. His opinion

of Valtrex is that it is extremely safe and all it can do is kill viruses

with the same DNA structure as herpes.

>

>My son's improvements have been subtle and most noticeable in our daily

activities. The ABA data may not show much. I think my uncle whom we

haven't seen in about a year brought things into perspective. I hadn't even

asked him anything, but he came up to me and said, " he seems so interactive

now, I am so happy for you " . Of course I beemed like any proud parent.

>

>I hope this helps some people. I think human nature is to speak up when

there are problems or concerns. There are a lot of new people on this list

or people who are investigating the information to see if it is right for

their kids. I think it would be a great service for those who are seeing

positive results due to Dr. Goldberg's treatment to share it from time to

time. Even though I feel I am doing the right thing, I would like to hear

posivitve comments as well as the necessary discussions about problems.

>

>Thank you

> Little

>

March 22, 2002

Dear

Thank you for sharing your story with us. I admit I am guilty for not

writing as often as I should and new parents need to hear about our stories.