Video of Tyler 2 years old undiagnosed neurological

[luv4cascy]

it took until i was 27 to get the mitochondrial metabolic myopathy diagnosed..and this year for the SVT (which the docs swore was anxiety and im not an anxious person) It was the SA node...have you seen a genetic specialist? I understand how hard it is to be tested for everything and not get answers. I'll keep you in my prayers..keep me updated :)

[naturalthing1]

Ask your doctor about Pakisonal. It's helping my son with his dystonia. He is only 14 months old.

[BrideBeliever]

There is a condition called PHHI that is rare and highly underdiagnosed. Google PHHI and look at children's hosp. Phili. It is hyperisulinism that causes severe hypoglycemia in infants and children. The hypoglycemia causes seizures. A lot of the children have been put on seizure meds before proper diagnosis. Have his fasting blood sugar levels tested. It's a simple test. Good luck to you.

[laineyful]

Has he had 24 hr EEGs and does anything at all register when he does this?

[Anticyclonic]

There is a condition called Idiopathic Epilepsy, which is basically the development of seizures with no known cause. Has your doctor ruled this out?

[TooKoolKris]

Has the doctor ruled out severe dystonia or similar neurological disorders?

[cait0334]

Dystonia is what they are currently investigating. This video actually is a seizure though. I will try to get video of the episodes he gets daily. Thanks!!

[lolly16]

I think you should keep pressing...i know its hard..but sometimes you gotta keep pressing, he cant go on like that.. it looks like a seizure too me, some types of seizures are not picked up on eegs and this could be one. I really hope you get a diagnosis and treatment, my thoughts are with you

[breanasgrandma]

omg, i have a grandaughter that has been going to the dr's since she was 4 mo old and still no luck on her diag. we take to houston to see a very good dr. but he wants to diagnose with rett syndrome just beacause she has some symptoms, but her test came back neg. she will be 4 this yr. and my little does not talk or walk. if u get a diagnose please keep me posted. i will keep him in my prayers...

[laineyful]

My daughter has Rett Syndrome. 25% are not caught by the blood test. What symptoms does she have?

[cait0334]

Tyler has been diagnosed with Mitochondrial disease. They made the diagnosis based on a muscle biopsy. I hope this helps!

[mnat28]

I was about to suggest he might have Mitochondrial Disease-my niece has Mito-and started having seizures at 5 mos and they were pretty bad. Investigating their cause they-by biopsy as well. She's 4 1/2 now and as a consequence suffers from epilepsy-now controlled thanx to the Ketogenic diet and meds, very low muscle tone-getting better w/the help of therapists etc but still has issues with fine motor skills and trouble focusing... but doing well in spite of it all...

God bless your son!

[lolly16]

They have done eeg's right? Tested hi blood sugars?