RE: FW: Re:immunologist recommendation

[Guest guest]

When our son was diagnosed with PANDAS we were days away from flying to the

Autism Clinic in NY. When we got the CamKinase test back we told them in NY

and they advised us to stay here in Canada and get treated. We are just this

morning going to a research immunologist at our children’s hospital who does

have some knowledge of pandas and who will, hopefully, be able to give him

the treatment he has required all these years in order to get well.

From: [mailto: ] On Behalf Of

and Marcia Hinds

Sent: October-07-10 8:27 AM

Subject: FW: Re:immunologist recommendation

I sent this to a parent on another list who was asking for a recommendation

for an immunologist and thought it might be helpful to some of you on the

NiDS list. I love to see kids getting better.

Marcia

Chet,

I don't know where you are located, but Dr in Port Arkansas, Texas

or also visits New York autism clinic several times a year, or Dr. Goldberg

in Tarzana, CA will help more than a typical immunologist. They are

specialists in the field. Dr. Goldberg is the reason my son is recovered

today. Only another parent understands what it is like to live with autism

day in and day out. The isolation and loneliness this diagnosis brings can

be overwhelming. The hardest part is to continue to get up every day, and

not give up on our kids. I want them all to recover and have a chance at

life that my son has.

My son, , was diagnosed when he was four years old. A psychiatrist who

was the leading authority on autism said would never be okay.

According to this expert, my son was going to end up in an institution or

group home. Now at 22, the only institution attends is the university

where he studies mechanical engineering on a merit scholarship. Today, he

does all the things the professionals said would never happen. excels

academically and is a member of the Engineering Honor Society (top 10% GPA).

He is a member of Sigma Chi Fraternity and was president of the Jewish

Student Association. But most importantly has friends and is happy.

He is a typical college student who drinks an occasional beer, goes on

dates, stays out too late with friends and then sleeps through eight o'clock

classes. I couldn't be more proud.

When was little, I never imagined these things were possible.

Unbelievable as it seems, this is the same child who wanted to spend every

day all day long plugging in a portable radio into each outlet in the house.

's recovery was a direct result of treatment by a doctor who believed

that our children can get better if the problems with their immune systems

are addressed medically.

I recently recommended Dr. Goldberg to a mom who lives in Singapore. She

called me and I was quite concerned that she was traveling halfway across

the world on my recommendation. To be honest, this scared the hell out of

me. What if Dr. G couldn't help her son? I asked this mom if there was

anyone near her to do this. She came anyway and her son who has been in

treatment for only five months is improving leaps and bounds. We both cried

when she called me to tell me her son called her " mama " for the first time

ever. Her son loves music and in this short time of just five months he has

learned over twenty songs to sing. His mom practices the best piece of

advice I was ever given about the behavioral and educational component we

must do after our kids get better. " Use what they love to motivate and

teach them. " This mom from Singapore does this beautifully. She works

tirelessly with her child. Now her son is able to learn the things he

missed after Dr. G helped his immune system improve.

In her last email this is what she told me about her son's progress:

" Marcia, Five months ago I brought Jedi to SF park, my heart did cry when I

saw him he actually did not know how to play in the playground such as

climbing up the rope, ladder, walking and balancing on the balancing bar,

see saw, swing, etc. What he knew was slides..................... Literally,

this little guy had problem performing any obstacles physically. One week

ago, I brought him to the park which is more challenging than The SF Park.

Suddenly he knows how to climb ropes, walls, ladder, walking on the

balancing bar, etc without being taught. I am impressed.

Marcia, you can share my testimony to the rest of the mums that you know.

Jedi has been on the treatment for only 5 months. Look at him, He does

things which you never expected it. Feel free to share mine. "

This story is just one of many.

When I read things like this, I don't feel so guilty that mine is better

when so many kids are still suffering. I still question why is the accepted

form of treatment mostly behavioral and psychiatric in nature? It should be

common knowledge and accepted by all doctors is that autism is caused in

most part by an immune system that is not working properly and viruses

taking advantage of a dysfunctional immune system. It is up to us as

parents to lead the charge. We must shout from the rooftops that these kids

can recover if they are treated medically. We must create a world where

parents can take their children to any doctor, in any city, in any country

where the doctor says I know what this is; recognize that it is an immune

mediated medical condition, and knows what to do about it. All doctors need

to use the words, " this is my plan to help your child " rather than " I don't

know. " Only then will proper research, funding and answers come for

children with Autism.

It is starting to happen, but not fast enough. I hope the new research by

the Whittemore Institute (in collaboration with the Cleveland

Clinic and the National Cancer Institute) moves things faster. Their work

has tremendous implications for any family dealing with " Autism. " Studies

currently conducted hope to prove a subset of those diagnosed with " Autism "

has blood work that contains the newly discovered XMRV virus. This latest

research backs up what my son's doctor has known for years; the fact that

for many, autism is caused by viruses. The medical community, the

pharmaceutical companies and the world need to wake up and realize Autism is

a medical disease and diseases are treatable!!! That is the only way to

change the outcome for all children affected by autism.

Marcia Hinds