Looking for help, Please

Thank you for the welcome. I am hoping that I can get some answers or suggestions that doctors can't give me for my son's condition. He constantly complains that his knees and legs ache. HE has turned into a restless sleeper where he would sleep 12 hours straight before. He has had a few bouts (just this am) of vomitting. His pediatrician can't tell me if any of this is 'normal' or not and what I should expect, or what I should look for to determine if he's improving or getting worse.

I am not sure about the vommitting, but the legs can be helped a lot with a magnesium supplement (powder works faster). It relaxes the muscle.

Sorry havent heard of vomiting as a symptom but agree with Liz about magnesium.

Just wanted to say hello and hope you enjoy the forum.

Take care, Patsy x

hi, How old is your son? may be it would be wise not to assume it is part of his ataxia condition and arrange for a doctor to see him asap. Even take him to A&E if necessary. Sorry, dont want to sound scarey, but best to be cautious.

Wishing you and your son all the best.

I'm NO DOC. but this is what I do for the restless legs (and STRETCH, STRETCH, STRETCH!) http://rideataxia.kintera.org/faf/donorReg/donorPledge.asp?ievent=1012685&lis=1&kntae1012685=CDC80F9686AF4FC58B063715C6C70F7F&supId=357847712


Thank you for the replies. I did take to the pediatrician last week after the vomiting episode. My husband and I are wondering if he could also be sensitive to gluten. It seems when he has more bread type products, esp around dinner time, he wakes up with a sore tummy. (Any comments/thoughts????)

Right now I have another concern. My son (Dillon) had a pediatric neuro follow up appt Friday and the neurologist isn't convinced he has ataxia. He is thinking Guillain-Barre Syndrome. Dillon has a nerve conduction study tomorrow. Does anyone have experience with this? I just want to tell him what to expect. He doesn't like surprises. I have done a ton of reading, but that doesn't tell what the test actually feels like.

I just noticed the word "Vomitting"

It may not be any conection, but during my (turned down) claim on life Insurance policy there was a mention of my visiting my GP a number of times (years ago) for a SORE THROAT !!!!

Hi Stacioh1,

you wrote, that the symptoms of your son appeared within 2 days? And that he has been diagnosed only a week ago? That he has got cerebellar ataxia?- When the treating doctors of your son did not find out more than that, i would try to find another medical help, especially with an more precise diagnosis; perhaps medikaments. Sounds a little dangerous, this situation..

Kind regards, happy to have met you in this group. Hopefully the problems of your son will go by.

0h, i just read that you have been at an pediatric neuro follow up with your son and that another diagnosis is considered.. I have had a nerve conduction study last year. It lasted perhaps 10 minutes. It s with electic devices put on your legs. Somehow prickling, but not reaching pain-level. The outcome for me was that my state was comparable to a polyneuropathy and that my reactive profile is sensitive.

I wonder, has Dillon had a MRI or CT scan? The combination of ataxia and vomiting is concerning in a child and it would be wise to exclude a tumour if this hasn't already been done. I am not a doctor either, but a children's nurse.

All the best, Anne

If it is ataxia, I would not be surprised at all if he is gluten intolerant. Many people who are ataxic also have problems with gluten. I went gluten free about a year and a half ago and noticed a huge difference.

Vomiting could be a sign of gluten intolerance although normally it gives intestinal problems of the lower kind… An emg, nerve conduction can either be with pads and electrical shocks or with needles. Both are mildly uncomfortable but not too bad.
The needles are very thin and one barley notices the sting. I found the shock thing with the pads worse. If they suspect Guillian barre syndrome it’ll likely be the needle option

I have Sporatic Spinal Cerebellum ataxia, which means they don’t know how I got this. What really has helped me with the aches and pains in my legs are antioxidents because they help with inflammation in the joints along with going Gluten free. Refined sugar creats inflammation and I stay away from that big time!
Focused regular movements (exercise daily). Not only help the body but the brain, and gain more control of the connection between the two!
I wounded if his body is stressed from the pain and may need to learn to calm the fear. Sounds simple but worth looking at. It might help untill he gets diagnosed and going through testing. For aches I use Arnica Gel cream on my legs that temporarily helps with pain. You can find it in a health food stare, over the counter. Good luck with everything! Please keep us posted .

I had knee and leg ache when I had my hepatitis B and in my blood work, the VItamin D levels were very low.Now after Vitamin D supplements I am feeling much better. I was constantly falling too and that has reduced much better. If this information can be of use to you I will be happy. Good luck and well wishes to your son.

Hi Anne -

Dillon is almost 6. He had an MRI, CT, spinal tap and lots of blood work. His MRI was compared to one he had when he was a baby for other reasons and was said to be normal. The CT, and blood work were normal also. The only thing that was found was a slightly elevated protein in his spinal fluid. The neuro's we saw weren't concerned about the protein, but the other neuro that we saw on Friday was concerned.

anne said:

I wonder, has Dillon had a MRI or CT scan? The combination of ataxia and vomiting is concerning in a child and it would be wise to exclude a tumour if this hasn't already been done. I am not a doctor either, but a children's nurse.

All the best, Anne

I see the sadness of this situation. I am a 50 yo male that has extreme restless nites and has bouts of vomiting. I am learning this is normal in my life, but I did not realize it occurred in others. I will say the restlessness seems to be a ataxia normal. The brain seems to wake up when we relax. I hope you well and hope you discover why the vomiting.

Gluten can be a big problem for many people. I have gluten ataxia. I went from bed bound in 2008 to where I was able to do a 5K a few months ago (walking).

I'm praying for quick answers.


Some people with episodic ataxia are having attacks of feeling nausea (i hope its the right word). They have to vomit.

And some people do have dystonia for example in 1 foot or leg. and that can really hurt...

My son maybe has ea and/or dystonia. next week we will get the results of the tests (mri, blood urine and spinal fluid)

If you have questions, you can send me a message. No problem! (my native language is dutch so sorry for my english)

Greetings Kimberley