Hi, My name is Mia. I have a 5 year old daughter with ataxia. She has seen many physicians none of which can give her a solid diagnosis. Her neurologist says that she is very sure she has a neurological disorder but she's not sure which kind. I am so frustrated and ready for answers.

My daughter can walk on her own without assistance but she tends to fall down a lot and has very unsteady gait. Her reflexes are absent in her lower extremities. I have recently heard talk of individuals experiencing ataxia and other neurological symptoms from having a gluten intolerance. I am looking for anyone who many have or know of anyone with a similar situation that could help. Thank you!

Hi Mia~ Well, I can't help w/your questions, but I want to Welcome you to NeuroTalk. This is an amazing place full of very helpful members. Take a look around and I'm sure someone will come along soon that may be able to help.

Have you taken a look at our Gluten Sensitivity forum yet?:

http://neurotalk.psychcentral.com/fo...aysprune=&f=13

Lots of information there on the neurolgoical manifetations of gluten intolerance, especially in this section of The Gluten File:

http://jccglutenfree.googlepages.com/glutenataxia

Hey,
Welcome to Neurotalk, if you need anything just ask, I will try and help you if I can. I suffer from "balance problems" (my left leg shoots out in front of me) but this is because of RSD and Dystonia.
I am so sorry about what you and your daughters going through, If I can help you in any way please ask
thanks and welcome onboard.

I take it she's had MRIs? What's her history like? Any evidence of seizures of any kind? Any other symptoms?

If she's had MRIs, get them looked at by a neurosurgeon and checked carefully for things like Chiari Malformation. This is a herniation of the cerebellar tonsils in the lower back of the brain. Even a tiny herniation easily missed by an untrained eye can cause serious problems, including ataxia, so make sure you aren't blown off by a comment such as "Oh, it's so tiny. It doesn't have anything to do with this..." It very well might, and sadly, even most neurosurgeons don't know enough about Chiari, so if you find out she has it, you'll need a nsg who is well-trained and experienced.

Good luck!

LIZARD

Hi, Mia! Welcome to NeuroTalk!

This must so difficult for you. You have found a caring and supportive community here. I hope you'll get some answers soon.

Hi, I also have a daughter with Spino cerebellar ataxia and she is displaying very similar symptoms to your daughter. She is 12 now and we realised there was a problem when she ws 18 months and not walking. She did walk at 23 months but was a drunk toddler who kept falling down and that never changed and is the same now she is 12.
She has had MRI's and her Cerebellum is atrophying (Shrinking) and her wobbles as we call them are getting worse. She too has no reflexes in her ankles.
It is tough for her as she is fast developing in to a young lady and to keep falling is embarrassing for her and frustrating because she tries to do sporty things but just can't.
I can really sympathise for you with your daughter.
I am really happy to keep in touch as being a mother of a child affected in this way is so hard, especially as there is little they can do.
Ella takes Co-Enzyme Q10 which is reported to help slow down the shrinkage of the cerebellam and also Gabapentin or Neurontin to try and prevent as much of the neuro pathic pain she gets.
I would love to hear from you. Maybe we can help each other.
Take care
april

Hello,
I realize you posted this years ago but my grandson (who I am raising) was diagnosed with Spinocerebellar ataxia 27, TODAY! Your description of your daughter is like de-ja-vu. He didn't walk until he was 16 months old, he is now 6. His symptoms are: falls all the time, atypical seizure disorder, has poor vision, cognitive delays, poor reflexes and a "wobbly" gait. But he has learned to ride his bike with training wheels, and does the physical things as best he can like runnining, jumping playing etc. In addition his symptoms intensify to a point of complete motor control loss when he has a viral/bacterial infection that causes a spike in fever, and these episodes have been worse in the last year. But, his MRI's for the last 6 years have been normal...I fear that he is going get worse...I don't know what to expect or what his future holds...

Thanks for reading, hope to hear from you.

Hello Mia, and welcome to NeuroTalk! We're so glad you found us!!

This is such a great place with lots of friendly, caring, and helpful people.

I wish all the best for your dear daughter.

Hi april,

If your daughter has not been evaluated for gluten sensitivity, please be sure to do so. Up to 40% of those with spinocerebellar ataxia have been found to be gluten sensitive~ with the primary treatment being a gluten free diet. In some cases there is definite improvement, depending upon the severity and duration of the disease process. In other cases, the best hope is to stop the process from further progression.

Much of this research has been done in just the last ten years, so many neurologists are not even aware.

There is a lot of information about diagnostics and the neurological maninfestations of gluten sensitivity in The Gluten File linked below in my signature. They have recently found a new antibody related to gluten ataxia, unfortunately not yet available to the public.

Dr. Marios Hadjivassiliou, from the UK, has done the bulk of the research in the area of gluten sensitivity and ataxia. Perhaps your doctor could contact him to see whether it is possible to have this new test. I see you are from England... are you aware of Dr. Hadjivassiliou's work?
http://jccglutenfree.googlepages.com/halloffame

And, here is the body of research I have found pertaining to gluten ataxia.
http://jccglutenfree.googlepages.com/glutenataxia

Deficiency of vitamin E and B12 are also associated with ataxia, I think.


My daughter was showing unusual neurological symptoms around age 4 that I believe may have been early stages of ataxia (staggering, leg drag, eyelid dropping, limp body fatigue, slurred speech, incontinence). We stumbled upon this information eight years ago, while researching other health problems within the family. We put her on a gluten free diet even after her testing for celiac disease turned up negative because we had read that gluten sensitivity can affect one neurologically without evidence if celiac disease (without postitive anti-tTG and villous atrophy on intestinal biopsy). She also had gastrointestinal symptoms, but gluten sensitivity can cause neurological disease without any gastrointestinal involvement at all. All of my daughters symptoms resolved. Here is our story.
http://jccglutenfree.googlepages.com/thestory

Cara