Hypotonia and Delayed Motor Development

Updated on May 28, 2010
L.S. asks from Saint Petersburg, FL
7 answers

My daughter, who just turned 1 yesterday, was diagnosed with hypotonia and delayed motor development. She is unable to sit up on her own without some support and she cannot crawl or walk. We have talked to her pediatrician and we had her seen by a orthopedic and neurologist, none of which really knew the cause of her disability. We were then referred to the Early Steps program where they came to my home to ask a few questions to see if my daughter would qualify for their services, and they advised that they will have a physical therapist come out to my home to do a full evaluation on my daughter. I was told it may take a couple more weeks before someone can be here to see us.
It has already been about 4 months since this whole process began, and I am of course wanting to speed up this process so I can figure out what is the root of the problem so we can find the proper treatment for my daughter.
Do any moms know anything about hypotonia??? Any information or suggestions is greatly appreciated.

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T.O.

answers from Sarasota on

L.,
My son was diagnosed with fine motor development delay and hypotonia a few times since age 1. He eventually was diagnosed with Asperger syndrome, and those are characteristics of Asperger--which is not at all to say your daughter has Asperger or anything like that. Just saying I am familiar with both. Basically he just has very weak upper body development from the hypotonia. His fine motor skill development delay mostly caused problems with him using buttons, zippers, eating utensils, etc. at the 'proper' age. He's had occupational therapy on and off for about 4 years. We did a lot of work at home too to help build his muscles--like playing 'wheelbarrow' with him so he could practice building muscles in his arms and putting pieces of dried macaroni into a hole cut in a plastic lid so he could work on the fine motor stuff. There's a lot the physical therapist can show you that will help you help her from home. First and foremost, try not to freak out or worry too much. I did, and it certainly was no benefit to anyone. And I'm thrilled to say that at 6 1/2 years old my son can button/zip his own clothes just fine, he can write normally, and he has fallen in love with-- and is doing very well in-- baseball. Throwing, hitting, etc. His hard work is paying off. Best of luck to you and your daughter.

1 mom found this helpful

D.P.

answers from Sarasota on

Hey there L., both my twin boys were diagnosed with Hypotonia and PDD at about 18mtns old and were considered on the "spectrum". I can tell you early interevention is so key. I also know that the occupational therapist worked with us in our home and then eventually in school and now at almost age 7 they still recieve some therapies in school but I have learned how to incorporate certain play toys that also worked as therapy to help develop those muscles. it's just a word for "weak muscles" you can do lots of strenghtening exercises and kids eventually outgrow the symptoms and function just fine. As far as the waiting game, I would suggest being a "squeaky wheel" and just continue to follow up to get whatever servies they can assist you with. if you want to speak with me directly feel free to conact me via email at [email protected]____.com Hope you have a God Blessed day :)

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J.L.

answers from Sarasota on

My daughter was diagnosed with hypoyonia at 6 months old . She didn't sit till 13 months didn't walk to 18 months. She had every test in the world the doctors were sure she had muscular dystrophy. She had the biopsy showed nothing wrong. They told me she wouldn't walk.... the early steps told me she was in heart failure was not after being rushed to all childrens. ect... My daughter is now 6 and runs and plays and you would never know she ever had a problem. I dn't know your whole situation but all I can tell you is try not to worry to much and read a lot of information so you can be a good advocate fr your child. The nueroligist told me there was always a underlying condition that causes hypotonia, later had to retract that. Because he couldn't find one. Good luck and if I can be of more help fell free to contact me. Jodi

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T.F.

answers from Sarasota on

I believe hypotonia is low muscle tone. My son had it as well. A physical therapist and/or occupational therapist could help her. I know some people who have also used hippotherapy (therapy with horses) as well. Hopefully you can get referrals through your ped. or Early Steps. If they're slow to respond keep after them to get what you need for your child.
Good luck.

T. F.

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L.H.

answers from Pittsburgh on

My daughter also was diagnosed with hypotonia when she was a year old. She is now 15 months old. We have an OT, PT and Speech therapist come in once a week. Plus we do about 2 hours of therapy with her today and try to incorporate it in everything we do. We also don't know why she has it. We have had a MRI which came back normal and all the genetic testing, everything is normal. I know how you feel. The best bet would be to get an evaluation. Here in PA, we use the Early Learning Institute. Its a free service. They come into your home and show you how do the exercises you need to do and meet with us once a week to track progress and add new exercises. Since we have started, she is sitting up which she wasn't doing before, feeding herself, holding her own sippy cup, eating using her pinchers and much more. We have seen a lot of progress. I hope this helps and i know how you feel. We have no idea how long we will need therapy at this point.

She has made great strides in her therapy. Her core muscles have gotten alot more strong. We are working on getting her coordination up to speed to. Working exercises for crawling, walking, wrist rotation and much more. The only regret i have is i wish we realized this early. My daughter also has craniosyntosis and pierre robin complex without the cleft palate (which basically means she has a small lower jaw). She had surgery at 3 months to remove a strip of her skull and she went through 7 months of helmet therapy. So we were just waiting to see what she would do on her own.

I think if you get an evaulation and start therapy, you will see so much improvement!! Good luck. Let me know if you have any other questions. I would be glad to help. Up until a few days ago i felt alone. Finding this website was helpful.

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M.S.

answers from Sarasota on

I do not know about hypotonia but I do use early steps. They should be coming into your home every 4 weeks to do an evaluation and do a yearly progress exam. My daughter is in the program. Please keep calling them and stress that you need to have your daughter evaluated ASAP. My daughters nurse is amazing and she always keeps on top of our monthly appointments. My best advice is to keep pushing your daughter. If they say she can't, you say she could. My daughter has down syndrome and that is the attitude my husband and I took and she is actually right on schedule with her milestones. Its the best advice that I ever received. If early steps is still putting you off, please e-mail me and I will give you the name of our nurse who helps out my daughter and maybe she can push your daughter through.

Good Luck and God Bless!

M.

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E.D.

answers from Tampa on

Hi L.:
My son had hypotonia as well. I was living in DC at the time and also had the county health department services (billed on sliding scale). I called them when Chrisian was being held back from moving up to the toddler room at his daycare for months and months after his peers becasue he still couldn't walk. The health department hooked me up with a wonderful physical therapist who visited his school once a week for an hour with him for about 2-3 months. She helped him strenghten his muscles and learn to walk, run, jump, kick etc. Then we were dismissed from the program and he is now (in kindergarten) a stronger and more coordinated athlete than most of his peers.

With the right help, this current delay should be quickly overcome.
Warmest regards

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