hello
 

Hi,
I found this site while looking for information about my daughter. She's 15, and over the past few months, she's developed tremors in her hands, around her mouth and her eyelid flutter when they are closed. She sometimes will also have tremors in her legs and even her whole arms. Add to that, she gets really achy and sore in he limbs, her hands will sometimes turn dead white and get really cold for no reason,and gets weird pinprick feelings in hers hands and feet.

She's been to a pediatric neurologist, who has done a whole slew of tests, from blood tests to x rays and an mri to try and figure out what is going on. So far, we know she doesn't have a tumor or ms, but other than that, even the neurologist is somewhat stumped.

To help with the tremors ( which she says are myoclonus) she has her taking kepra, but it isn't helping.

She had her see a rumatologist who is testing her for lupus, and she said she may have ranauds syndrome, which could explain the color change sin her hands.

The poor kid is pretty miserable right now, and the pain really bothers her a lot. I'm kind of hoping that someone out there may have heard of something similar and may have some ideas of how to help.Her neurologist told us that sometimes a cause for these things isn't found, and you have to try a variety of treatments until one of them works, and to not give up.

I really want to help her, but i don't know what more to do.

We also have two others kids, and the youngest has autism and the oldest has depression, aspergers and chronic complex pain syndrome.

Hi cejmom

Welcome to NeuroTalk.

I have only been a member for a short time but have discovered that it is a very supportive and knowledgeable community.

I am sorry to read about your daughter but it is good that the clinicians are doing a thorough investigation.

If Raynaud's disease applies to her, the information in this site might help you; http://www.mayoclinic.org/diseases-c...n/con-20022916 .

All the best.

Welcome cejmom. :Tip-Hat:

Hello cejmom,

Welcome to the NeuroTalk Support Groups.

Maybe you could repost over on
Epilepsy Forum
to see if some of your daughter's symptoms are familiar to the members there.

I'm sorry that she's having such a difficult time.
You have your hands full there by the sound of it.
Don't forget to take care of you too.

Nice to meet you!!