Thursday, March 26, 2009

Benign Congenital Hypotonia (Low Muscle Tone) and the Gluten Free Diet

Several neurologists examined my daughter when she was 19 months old and not walking. We got comments like "Well, she is never going to get an athletic scholarship. But you don't need to worry." "It runs in your family." People were impressed by her precocious language ability, her fine motor skills and her cute, round, cherub like face. She did OT and PT and swimming for four years, but she still had chicken legs, a round stomach, was weak and was falling in kindergarten. She was required to wear sneakers once a week for gym class, but for some reason the sneakers made her trip even more. Once she said tearfully after falling on the way to school "I don't understand, sneakers are supposed to help you to run better, why do I fall?" She was five when she was tripping on the way to school. I thought it was genetic and that it was just who she was. But when my son got terribly sick and we put him on the gluten free/casein free diet, I also put her on a gluten free diet and the first thing that disappeared was the falling on the way to school. I SPENT FOUR YEARS DRAGGING HER TO OT AND PT AND IT TOOK LESS THAN A MONTH FOR HER TO STOP TRIPPING AND FALLING. Several months later she had muscles and her sensory problems vanished.

It makes me sad that pediatricians, neurologists, OT's and PT's who looked at her and worked with her never suggested an underlying health issue might be factor. No one ever mentioned there was a biomedical approach. Low muscle tone is benign--you are not going to die from it. And people consider dietary intervention too difficult. But low muscle tone is a classic symptom of celiac, which affects 1 in 100 people and people with gluten intolerance also get better from a
gluten free diet. Although the state payed for my daughters OT and PT, wouldn't she have been happier and felt more normal if she didn't have to go to the "gym" for four hours a week? I like to think I didn't really mind taking her to the gym, but truthfully, it was exhausting. And imagine how much more effective her gym would have been if she had also addressed the underlying cause of her low tone--she might have actually gotten some muscles.

It's weird to say, but I am grateful for her that her brother got so sick or we never would have investigated a gluten free diet and gotten to the bottom of her issues. Don't get me wrong she is still a handful and she still has other health issues. She is not perfect. And there are other things we are still dealing with. But how great is it that low muscle tone and sensory integration are not something I have to deal with AT ALL? She doesn't need to be taken out of the classroom to get OT and PT and she doesn't fall on the way to school anymore. She has muscles on her legs where there used to be just bones and fat and most important--she feels like a normal kid.

11 comments:

Territory Mom said...

Okay, this is us. My son has the same diagnosis with a little hyper activity. He is in an autistic special ed. class, but I know he will come out of this. I've asked doctors about the GF diet and they say if he hasn't been diagnosed with celiac disease then its not necessary. I guess I should start with getting "Evidence of Harm". I need some advice. Thanks

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gfcfmom said...

Here is the journal article that made me realize that my daughter had celiac:

Range of Neurologic Disorders in Patients With Celiac Disease

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Territory Mom said...

I read the article. Right on the money. I'll get started. Thank you.

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Anonymous said...

My daughter, now 2 1/2 has Hypotonia, with no other symptoms. We had searched with blood work, but they have been negative.
She walked at 19 months but is still quite clumsy and doesn't regularly sit up straight unless i remind her. She quickly gets tired as well. I knew there had to be a diet that would help. I ask the geneticist and she said no. I am going to try it and she what happens. Wish me luck because she LOVES to eat and is very strong willed.

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Anonymous said...

Hi and thank you for writing your post about Low Muscle Tone. Our daughter too has grown up with low muscle tone and was diagnosed with something called Ehlers Danlos Syndrom. Just before turning five, we read what you wrote here about Gluten allergies and thought that you were writting about our daughter. Now 3 months later, she has been diagnosed with Coeliac disease, something that her doctors chuckled about when we said we wanted to test for it. We have started with a Gluten free diet now and hopefully she will be running and jumping like her 5 year old friends soon. Thanks again your your post. It pointed us in an entirely new direction that none of my daughter's doctors could foresee. MoJ

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Anonymous said...

Our son is 18 months and was diagnosed with Hypotonia at 4 months old. He is sitting, crawling, & standing, but not yet walking. They've haven't yet been able to find a reason behind his condition, and I've often wondered about dietary factors. HE often will cry after eating and is very fussy. He's absolutely fine in all other areas, and even his fine motor/speech is perfect. I'm going to explore this more so thanks so much for this post!!

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varsha said...

My daughter, now 23 months has been diagnosed "Benign Congenital Hypotonia", with no other symptoms. The problem she is having is with anti gravity activities. She can walk well but she cannot sit up from lying position and cannot stand up from sitting position. She needs our support to do these activates. She even cannot climb by her own.

Neurologist has suggested her to give for 3 months PT. Do we need to do any other tests or do we require to give her Gluten Free diet?

Please suggest.

Thanks a lot.

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anna said...

Do NOT ever do a gluten free diet, it taught my daughter how to diet and then caused anorexia which caused inpatient and long term residential do NOT do this

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Anonymous said...

My daughter has the same diagnosis. I actually cried when I read your post. I have non-celiac gluten intolerance. I did not relate her condition to mine. Now I can do that. Does your daughter also have any learning disabilities? Mine seems to have dislexia..

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gfcfmom said...

email me sometime. the link is on the right near the top. no we don't have any learning disabilities that we know of--but I know people and have told parents to do research and investigate fish oil and their kids have REALLY gotten better from LDs by increasing healthy fats. You might want to listen to the videos of kelly dorfman in my VIDEO section about the importance of fat for the brain.

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Anonymous said...

Anna this is irresponsible of you to post this. These people are allergic to gluten, and diagnosed as celiac.It acts like an autoimmune disorder. I highly doubt that a "diet" caused anorexia. Anorexia is a mental disorder.

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