Hypotonia Support Group

Hypotonia is a condition of abnormally low muscle tone (the amount of tension or resistance to movement in a muscle), often involving reduced muscle strength. Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength.

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  • deleted_user

    My Hypotonic Timeline

    Hello! My name is Bree, I am twenty years old. I am an artist, an athlete, a student, and I have hypotonia.I have occasionally checked out online support groups for the disorder and most commonly see parents of young children and infants seeking questions about hypotonia, but I rarely see testimonies from adults and young adults living with hypotonia. I am here to prove that we do grow up to be...
  • ale

    I have a 7-yr daughter with hypotonia

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    i have been searching a group to exchange experiences a while, but finally I found this. I live in brazil. My daughter was diagnosed by the age of 1 yr. she had motor developmental delay ans these difficulties (fine and gross motor activities) are still present. At school she is doing fine, but we notice she is somewhat behind in maths. We retained her one year in the school. I mean the first...
  • resih

    Some food for thought

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    I am a physical therapist with pediatric experience.  I also have some undiagnosed mixed tone issues--probably originally sensory in origin but now very ingrained.  I found this page while searching for exercises for adults with hypotonia and thought I would share what popped into my head.  I have always found traditional exercise to be too hard--potentially injurious.  The response time of...
  • deleted_user

    Adult hypotonia

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    I was born with hypotonia as a result of the placenta becoming detached in utero - i am 22 years old now and still battling the condition. When i was younger i had everything: phyio, therapy, shoes, exercises, orthotic... you name it, i had it! But now as an adult, i seem to have lost hope and given up on ever having 'normal' legs. I have terribly rotated knees/hips/legs, flat feet and as a...
  • AS81

    New to all of this

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    Hi, my daughter is 11 months, she was diagnosed with hypotonia 2 months ago and is getting input from SALT and physio. We are still waiting for her first paediatrician appointment. Her low muscle tone seems to be worst in her trunk and neck. We are so new to this but already have had our ups and downs . She can now sit which is great progress, but today she has been started on thickened fluids as...
  • Madloul

    My son has Hypotonia

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    Hi all; my son 7month old has hypotonia, and now we feed him thru NGT.We have lack of information about hypotonia and how to take care about my son. the diffeculties of life that he face it in futur.unlucky I live in small town with basic support hospital and even the perdiatrician has lack of information about this situation and how to cure it.please share me advices about it.I really appreciate...
  • sm2017

    my son has hypotonia and low muscle tone

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    Hello all. My son has had hypotonia since he was born and he has always had questions about it. He is 18 years old now and I finally want to give him the answers he's been looking for. Could anyone please help me out? I also have some questions about it that no doctor has wanted to answer. Please... I'm begging you to please help me.
  • Jgillis85

    New to group

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    Hello my 7 month old son has Hypotonia. I'm hoping to meet others with experience so that I can prepare myself for what is to come. Does any one have any good places to start for research? He has OT once a week. 
  • deleted_user

    hypotonia and adhd

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    My 7 year old daughter was diagnosed with hypotonia when she was 13 months old. She can do just about anything physically except climb trees or swing on monkey bars. She does have some difficulty writing her letters but is doing better everyday. She also has ADHD and is behind academically. We are trying to mainstream her in school and she is in a special first grade, but did not even meet...
  • anash0489

    looking to meet others with hypotonic babies

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    Hello, my name is Ashley, my almost 10 month old daughter, Brooklyn has been diagnosed with hypotonia/muscle weakness. This journey has been a struggle for us as Brooklyn has other issues related to her hypotonia (laryngomalacia, dysphagia, developmental delay, obstructive apnea, GERD just to name a few) I have found it extremely hard to find anyone that has it is dealing with similar issues. As...
  • jacobw

    Teen looking for other teen to talk to.

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    I have had hypotonia since day 1 and it would be nice to talk to someone with hypotonia. -Jacob W
  • misterno123

    My son has hypotonia and low muscle tone (Houston)

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    Hello allWe live in Houston our first baby born on December 23, 2014. He is a little over 9 months old now.The reason for this post is we wanted to get together with other families in Houston having the same problem/struggle.His low muscle tone was first identified by his pediatrician in TX Children Hospital. At the time we never heard of hypotonia nor "low muscle tone". Upon learning this...
  • mariaguerra

    Hypotonia

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    Hello! My currently 23 month old son was diagnosed with mild hypotonia when he was around 4 months old and couldnt hold his head up without falling to the side. He never had feeding difficulties and walked by 15 months old. Now at 23 months he Runs and walks with an abnormal gait. Does this happen to your children? He is off balance as well. He has had a brain MRI, SPINE MRI, EMG TEST,CPK TEST,...
  • Miracle_Baby

    our miracle baby

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    After 12 years, one failed IVF and various tries to have a baby finally we have a boy..but he's not well. I join thus group with a very sad heart, in sheer desperation and hope that someone will tell me that 'hey woman, breathe..he will be fine, we have a similar story and our baby is doing great now'. The earliest alarming symptom that my boy showed was the inability to suck, he didn't latch on...
  • deleted_user

    No Diagnosis?

    Is there anyone else who has either had hypotonia or has a child w/ hypotonia, but never got a diagnosis? My son Luke has hypotonia in his legs and trunk. We've had every test done possible so far, with the exception of a muscle biopsy (don't want to do that right now) and everything has come back normal/negative. We are doing physical therapy which has helped tons. That is our plan right now, to...