Dear Lisa,
I'm so sorry about your son!!! Who diagnosed him and did they do a brain MRI? My husband was diagnosed at Mayo Clinic after a referral from his local physician. He was only given 3 to 4 years to live. He was walking then, but progressed from that to a cane and now uses a wheeled cart to get around. He also has trouble talking which the Mayo doctor said he would. Doctor said he would probably die of pneumonia as he would probably aspirate to a lung when swallowing. Noreen

Dr. Bodensteiner, diagnised him. He says his brain is normal for a 65 year old but not for a 5 year old. My son had his MRI done 1 year ago and we have to wait till spring or summer next year for another, he says we have a base but need another to compare the 2 MRI's. He told me not to search the internet but of course I have, just no solid definition of what to expect until we can get that 2nd MRI done.My son was just diagnosed a few months ago.

Dear Lisa, Please keep me informed as to the second MRI!!! Is the doctor who diagnosed your son at the Mayo Clinic?

Yes and he just retired, he was pediatric neurology, my son has now been place with Dr. Youseff

Hello Lisa, @lisapraska

I am so sorry to hear of your son's diagnosis! If you care to share more - what symptoms was your son experiencing that led to this diagnosis?

Teresa

Developmental delays in all areas, hypotonia, unstable walking, speech impairments, not meeting milestones, 5 yrs old but memtally about 2 1/2to 3 yrs old.

Also MRI findings

@lisapraska How heart-breaking for you! Is there any type of physical therapy that can help with his walking, gait or speech?

Teresa

He is getting occupational therapy, speech therapy, physical therapy, basically any type of therapy there is.

@howardjames , we go back to the Mayo Clinic to find out his Large panel testing results on Nov. 6th, wouldn't tell us anything over the phone..pretty nervous