Help for Two Kids with Joubert Syndrome
Ойын-сауық
The Doctors meet a young couple whose two young sons both suffer from a rare brain abnormality known as Joubert Syndrome. See the special surprises The Doctors, Free Rein Therapeutic Riding, Hanger Clinic, and Aetna have in store for them.
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Пікірлер: 14
Very RARE DIAGNOSIS. Loads of therapy needed we went through this and still are - it never ends. These children are special.
@DavenportBarr
3 жыл бұрын
Our grandson will be 7 in June!
@santhupunna3984
3 жыл бұрын
my daughter has joubert syndrome...pls tell me what is the diagnosis for this ...
@artgirl9005
3 жыл бұрын
@@santhupunna3984 It is a genetic disorder. There are 27 different versions of it. You must seek out genetic testing to get a diagnosis.
@cohenisabot
3 жыл бұрын
My 8 month old was just diagnosed and I have no idea what I am doing right now
@artgirl9005
3 жыл бұрын
@@cohenisabot Just take it slow and find what your child needs. That's what we did. When my daughter was born there was NO HELP AT ALL for her condition. We gave her plenty of therapies - all of them....OT, PT, SPEECH LANGUAGE, SENSORY INTEGRATION etc. She had motor issues and a problem with her eyes. She had surgery on her eyes and we worked with her. She did not crawl or meet any of her milestones as other babies and children would. She was also two months premature which didn't help the situtation any. When these kids are babies, it's difficult to get an appropriate diagnosis. You MUST get genetic testing done and take it from there. Most physician's don't have a clue about Joubert Syndrome or any of it's varients...it's such a rare disorder. Each individual is affected differently as well...no two people are alike. It's sort of like Autism (which my daughter also has) there are many different versions of it. Think cause and effect...look at your child's each individual need and take care of it. You can also contact the Joubert Syndrome Foundation for assistance. Do NOT expect to find any assistance or medical help from your community.
They can be friends
my son has joubert syndrome iam all that is new for me 😏 doctor will re check him again
@DavenportBarr
3 жыл бұрын
Praying for you and your son.
@artgirl9005
3 жыл бұрын
You must get genetic testing for a diagnosis, otherwise you are wasting your time. Most physicians have NO CLUE what this disease is or how to diagnose it.
@michaelcandido2824
Жыл бұрын
I’m a carrier for this but I didn’t get it. It is caused by consanguinity within families. I think it’s most common in the Jewish community.
@michaelcandido2824
Жыл бұрын
As far as I’m concerned both mother and father need to be carriers of this syndrome in order to pass it down.