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2 1/2 Year Old Who Can't Walk.... Wondering If It Is Gulten Ataxia

CorbinsMommy

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CorbinsMommy Newbie
CorbinsMommy
Posted

Hello everyone,

I'm new here... trying to find an answer as to why my toddler can't walk. Here's the story:

He is 2 1/2. His first year of life was perfectly normal... all milestones (rolling over, sitting up, crawling, pulling to stand at furniture) were all right on track or early. When he was 13, almost 14 months old he got really sick with a temp of at least 105... ER diagnosed him with Pneumonia.

Well, by 15 months he was still not walking but doing everything that a baby would be doing right before they would walk so we thought nothing was wrong and that he was just a late walker...

At 18 months old I start really getting worried... stupid pediatrician said "oh he is still in the normal range" and did NOTHING.

At 2 1/2 he still can not walk (or even stand) unassisted. He can pull himself to a stand at furniture, cruse furniture, walk with a walker or if some one is holding his hands... he just does not have the balance or coordination to stand and walk alone.

He had an MRI done last week that showed his cerebellum has atrophied. Well that explained his inability to walk and also his severe speech delay but what would cause his cerebellum to atrophy???

The Neurologist has ordered some blood and urine tests, but so far most have come back normal.

I came across information about gluten ataxia the other day when doing research online about cerebellum atrophy. When I asked the neurologist about testing for gluten sensitivity or intolerance she told me that it is a digestive disease and that since he does not have diarrhea or constipation that is not what is causing his problem. I can't believe that a specialist would not know about a condition (even if it IS rare).

So my question is: could a gluten sensitivity be causing my sons disabilities??

Thanks in advance for any help!!

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Skylark Collaborator
Skylark
Posted

You might try writing the corresponding author on this research paper as to whether it's possible. He is a world expert on gluten ataxia.

Open Original Shared Link

The other obvious thing is to take your son off gluten and see if he improves. I think there are problems getting accurate anti-gliadin blood tests in kids under 5, so even if you can get your neurologist to have him tested it may come back as a false negative.

CorbinsMommy Newbie
CorbinsMommy
Posted
  • Author

The other obvious thing is to take your son off gluten and see if he improves. I think there are problems getting accurate anti-gliadin blood tests in kids under 5, so even if you can get your neurologist to have him tested it may come back as a false negative.

Oh yeah, I forgot to mention that... I have had him off gluten since Monday (5/17/10). Have not really seen any results so far but we will see. Thanks for the link!

vbecton Explorer
vbecton
Posted

I'm so sorry to hear about your son's difficulties. You are doing great things by advocating for your son. I can't comment on the gluten ataxia, but my son was gravely ill with Pertussis 2 years ago and subsequently suffered several strokes. He was 11 then. He stopped speaking for 6 weeks and I was told over and over that it was just a severe case of whooping cough and he would recover. He couldn't remember what the dishwasher was, that we had a garden, that the animals required food, he seemed lost in his own house, and it was all very bizarre. After 1 year of continued rejection from the doctors that he was "fine" and just needed more time to heal, I parked him in the hospital and refused to leave until we found out what was wrong. I probably came across as a lunatic, but when you have a child who is completely normal and then regresses, or stops progressing, there IS a problem. Do whatever it takes to get your son the right help and if one doctor won't listen, just walk on to the next one. I literally carried a phone book with me in the car, so when one doctor wouldn't investigate, we'd walk back to car and immediately make an appointment with another doctor.

We finally got my son straightened out mentally with lots of therapy, and, luckily today he is back on track (2 yrs later). However, we are just now in the throws of gluten intolerance and celiac diagnosis' so now I feel like we have some real answers as to what transpired 2 yrs ago. There seems to be lots of connections with strokes and celiac, plus other brain issues (including atrophy). Who knew that celiac could be the root cause of so much turmoil! I wish you luck in your journey and stick with the gluten diet for your son. He will benefit regardless of his diagnosis!

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