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I don't know where to start. Up until yesterday I didn't even know

this disease existed. I'm not sure I belong here yet, but I have a 5

year old who about a year ago started having intermitent

tingling/numbness in both feet. Someone yesterday mentioned that

some of his symptoms sounded similar to this so I started

researching. I'll try and sum up a very long story. Like I said

about a year ago now he started having what he discribed as " tickly

feet " He said they felt like they were asleep. He has a history of

seizures when he was a baby so in Nov. we went back to his

neurologist. She found nothing and we took the wait and see

approach. By Feb the numbness was constant, but still only his feet.

We saw our ped who noticed that he had clonus in his legs and

hyperreflexia in both legs also. We went back to the neurologist who

again found nothing, but started him on Neuontin. By our next appt

in July, his legs were giving out on him,he felt like his skin was

crawling all over his body all the time and the numbness was

spreading up. There was talk of doing an EMG and skin biopsy in

April, but now she decided she didn't want to do that. These

symptoms are getting worse and some nights(tonight again)he's asking

for Benedryl to help him sleep because he's so uncomfortable. I

can't get our neurologist to do anything and when I call them with

concerns(when his legs gave out in JUne, he hit his head on the

sidewalk)I'm told " This isn't urgent " We're seeing a new neurologist

a week from tomorrow and I'm so hoping to get some answers. I

skimmed some of the archives here and was reading some on talking in

your sleep. Is this related? My son talks in this sleep ALL the

time. He's had a ton of bloodwork and maybe they've already tested

for this I'm not sure. What blood tests are usually ordered? I have

copies of his records and will have to do some digging. What do you

guys think, what are some symptoms you or your children had before

diagnosis? I haven't noticed the high arch or other foot problems

that have been mentioned although I have had one doc tell me they

thought his gait was odd. Again, this neurologist we see see's none

of this and tells me there's nothing wrong. Thanks in advance for

helping out!!

Gretchen

(I see I'm not the only Gretchen, a first for me, I'm usually the

only one around!!LOL)