Re: Kris & anyone else going to Mayo 18-24th

[Guest guest]

We have had temporary symptoms of dystonia with Asenath about a year ago. Her toes would curl and her legs would get real tight and she would cry with the pain. For some reason this was only temporary following one of her strokes. We have also seen temporary dystonia/muscle tightness in Zipporrah following her two strokes. I don't really understand why theirs have been temporary rather than permanent, but we are very thankful.

I noticed that you will be at St. 's on the 17-18th. We will be going up on the 18th-24th. We will be staying at the RMH or a hotel on Wednesday evening, then a sleep study Thursday evening, back to the RMH or hotel from Friday to Sunday evening, and lastly going to St. 's Hospital from Sunday-Tuesday. Lots of moving around and complicated, but we think we have it all worked out. Asenath will stay home with daddy until Sunday and be taken care of by her oldest sister, who thankfully knows how to give all her meds, use the oxygen and apnea/pulse-ox monitors, and use the feeding pump. So it will be just my oldest son, Zipporrah, and I up at Mayo for the first several days. Then Asenath and my oldest daughter Leah will be with us and Luke will go home with his father for the last several days. It means a couple trips for my hubby as we want to use one car this time around, but better than the alternative of having to deal with Asenath during Zipporrah's sleep study. If you are going to be around late Wednesday evening or over the next few days, let me know if you would want to meet. That goes for anyone else going to Mayo from the 18-24th!

Darla

Do any others have these neuro symptoms?

Hi all,I was wondering if any other kids have similar symptoms to mine because there is now a question of what is their primary disorder.This is what we see and all occur at the same time: Eyes deviate to the right and get stuck their briefly (this is very painful for them--they cry and tell us to get the "bees out"), fingers began twisting in odd positions and get stuck in these odd positions, up on toes with toes curled under, somethimes they will stick their tongue out, they either bob their head, cock it to the right, or shake it. These episodes usually occur around a stress (bowel movement, burp, startle, sudden change in temp, excited about an activity). They usually occur daily with increase in frequency after illness or stress.Our last Mayo visit it seemed to be a group consensus amoung the docs that our children might have a neurotransmitter disorder causing all the mito symptoms. The boys are extremely responsive to thiamine and COQ10, we have a partial complex 1 biopsy in one of the twins, and one always has a high lactic acid; yet they say their neurological symptoms are not seizures, but classic examples of a neurotransmitter disturbance (especially the less affected one).We will be at St. 's on the 17 and 18 for LP's to rule this out.Thanks for any input,Kris