Seeking Advice on Hypotonia - Waynesville,MO

Updated on November 05, 2008
R.B. asks from East Grand Forks, MN
5 answers

Hi there. Recently my almost 5 month old was diagnosed with hypotonia (still looking for the root cause) he has been doctoring and will be starting PT and OT soon. I have been trying to do some research and what not on this, but I am coming up a bit shorthanded. I am looking for some info such as....

1. Tips from moms as to what to do at home to help strengthen muscles. 2. What is your daily life like with a baby/toddler with hypotonia. 3. Are there certain help websites I should familiarize myself with? 4. Things I should perhaps avoid? 5. Personal stories... I am feeling very helpless and alone with all this right now and all I have been hearing is negative things... I would like to know if there is a light at the end of the tunnel for us.

Any sort of help with these things would be so much appreciated. Thank you ahead of time!!!!!

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C.G.

answers from Columbia on

I'm not sure how closely related this story is to your situation, but I thought I'd share it because it is positive. I used the work in a child development center in an infant/toddler room and there was a little boy who started when he was about 3 or 4 months old. When you picked him up, he felt like a rag doll. His head bent back if not supported and he was totally limp when picked up. He also drooled all the time because his mouth hung open and his face sagged a little. His tummy bulged out from his muscles not being tight and his chest caved in. All the teachers kind of wondered about his situation and eventually mentioned concerns to his mother. She asked the doctor about this and he said he was "double jointed." I was so mad that this doctor said this. I have no medical degree, just a masters in early childhood, but even I could tell that this baby had low muscle tone.

The good news is that this baby was very active and was always moving and trying to get around. With the way his muscles were, it seemed impossible that he would ever be able to sit or stand or crawl on his own. However, he reached all of his milestones either early or on time! He was strong when he used his muscles, just limp when he wasn't using them. I'm not sure if he stayed on track because he was so active, and I'm not sure how a laid-back baby would be with this condition, but he did great!

So, I'm sure the therapists will know exactly how to help your baby. And, if you don't feel comfortable, it's always ok to get a second opinion if you don't feel like they are helping as much as they can.

You might want to give him plenty of floor time so he can practice using his muscles. Do some exercises with him that help with his strength--lay him flat and gently sit him up by lifting his arms so that he has to hold his own head up while sitting up. I'm sure the therapists will give you lots of things you can do at home too.
I'm sure everything will turn out fine. Best wishes!

1 mom found this helpful
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A.D.

answers from Kansas City on

Hi R.,
I'm sorry I really don't have any advice, but want to send some encouragement. It's amazing what PT and OT can do for these little ones! I can ask my neighbor, as she is a PT, and another friend who is an OT (both now Army SAHMs!) for some suggestions and get back to you. We're all the way out at Ft. Leavenworth, otherwise, I'd plan a date for us all to hang out and chat. Keep up the good work, keep stimulating and encouraging him, and hang in there!

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J.H.

answers from Kansas City on

R.--Hi! I am the mom of a now 21 yro adult with developmental disabilities (but disabilities different than Hypotonia) and I also work for the Missouri Developmental Disabilities Resource Center at the Institute for Human Development-UMKC. We have resources available that may help you at this time, as you begin to understand hypotonia. We have information packets, connections to support groups, and a wonderful network of experienced mentor parents who we can connect you to who will help answer your questions, share their experiences, listen, and help make these times easier for you. Please feel free to contact our program at ###-###-#### or 800-444-0821 toll free. All services are free of charge. Remember you are not alone, and that there are other parents available to help you during this time; just give us a call! Sincerely, J. Hatfield-Callen, Information and Outreach Specialist, MO Dev. Disability Resource Center

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P.S.

answers from St. Louis on

R.,
I am a PT, but like the earlier response, I hesitate to respond without seeing your child. I do, however, have a positive story to pass on to you. My boss has a child who had hypotonia symptoms (I don't know if she was ever diagnosed as such). Anyway, after several years of "clumsiness", she started to get PT and now is doing beautifully. You'd never know she had any such history of low-tone.
My only suggestion is to follow through with the therapy. As i mentioned, my boss's child was older, about 3, before she got therapy. She is now 5. Remember, "hypo" is just less than normal and we all know that normal is a loose term!!!

Good luck to you and your family

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T.B.

answers from St. Louis on

I am a physical therapist who works primarily with adults but i did work with 3-10 year olds for a few years. Without seeing your child I hesitate on giving any suggestions. However, the therapist who will come to your house will be able to give specifics based on your child's needs. If you have any questions with the recommendations from your therapists please don't hesitate to contact me.

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