NeuroTalk Support Groups - My daughter has ataxia

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My daughter has ataxia

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.

http://dl3.glitter-graphics.net/pub/...i08x3316s5.gif

Welcome to Neurotalk.

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.

Quote:

Originally Posted by miagrefe (Post 217200)

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.

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! :Wave-Hello: 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

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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.

Quote:

Dietary treatment of gluten ataxia.

Hadjivassiliou M, Davies-Jones GA, Sanders DS, Grünewald RA.

Department of Clinical Neurology, The Royal Hallamshire Hospital, Sheffield, UK. m.hadjivassiliou@sheffield.ac.uk

BACKGROUND: Gluten ataxia is an immune mediated disease, part of the spectrum of gluten sensitivity, and accounts for up to 40% of cases of idiopathic sporadic ataxia. No systematic study of the effect of gluten-free diet on gluten ataxia has ever been undertaken. OBJECTIVE: To study the effect of gluten-free diet on patients presenting with ataxia caused by gluten sensitivity. METHODS: 43 patients with gluten ataxia were studied. All were offered a gluten-free diet and monitored every six months. All patients underwent a battery of tests to assess their ataxia at baseline and after one year on diet. Twenty six patients (treatment group) adhered to the gluten-free diet and had evidence of elimination of antigliadin antibodies by one year. Fourteen patients refused the diet (control group). Three patients had persistently raised antigliadin antibodies despite adherence to the diet and were therefore excluded from the analysis. RESULTS: After one year there was improvement in ataxia reflected in all of the ataxia tests in the treatment group. This was significant when compared with the control group. The diet associated improvement was apparent irrespective of the presence of an enteropathy. CONCLUSIONS: Gluten ataxia responds to a strict gluten-free diet even in the absence of an enteropathy. The diagnosis of gluten ataxia is vital as it is one of the very few treatable causes of sporadic ataxia.

PMID: 12933922

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.

Quote:

RESULTS: Whereas the development of anti-transglutaminase 2 IgA is linked with gastrointestinal disease, an anti-transglutaminase 6 IgG and IgA response is prevalent in gluten ataxia, independent of intestinal involvement. Such antibodies are absent in ataxia of defined genetic origin or in healthy individuals. Inhibition studies showed that in those patients with ataxia and enteropathy, separate antibody populations react with the two different transglutaminase isozymes. Furthermore, postmortem analysis of brain tissue showed cerebellar IgA deposits that contained transglutaminase 6. INTERPRETATION: Antibodies against transglutaminase 6 can serve as a marker in addition to human leukocyte antigen type and detection of anti-gliadin and anti-transglutaminase 2 antibodies to identify a subgroup of patients with gluten sensitivity who may be at risk for development of neurological disease.
Autoantibodies in gluten ataxia recognize a novel neuronal transglutaminase.
PMID: 18825674 Sept 2008

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

Thanks jccgf, we will defiinately look in to the gluten side of things.
Thankyou
april:)