Baby with Low Muscle Tone (Hyopotonia)

Updated on January 19, 2011
M.C. asks from Warren, MI
7 answers

Hello,
I have a beautiful 11 month old son, he was born 10 weeks early, and was very sick at birth, i.e he was on a ventilator for 7 weeks, had chest tubes, and had a nasal feeding tube for 4 months. My question is this, i was told by my pediatrician and one of our therapists that he has low muscle tone so it will take him longer to reach his gross motor skills, he's not sitting up yet on his own, or standing. We're in Pt 3x a week and Ot 3x a week. He is making progress, just slow. I was curious if any other parents out there ever dealt w/ this? How long it took your child to sit up and walk etc.. I know every child is different, its just nice to hear other peoples experiences.

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So What Happened?

we actually see a pediatric neurologist tommorow for a 2nd opinion, we saw one last month, he was kind of rude, and his bedside manner stunk, he wanted him to have a brain MRI and follow up in 3 months. The reason we're getting a 2nd opinion is that i really don't want him having a brain mri right now since he'd have to be put to sleep for it, and he's already been through so much, the last time he was intubated last july for surgery he had a lot of swelling in his windpipe and was on O2 for a week. Plus i was told that regardless of what a MRI shows, the treatment is therapy which he's in 3 days a week anyway.

More Answers

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S.H.

answers from St. Louis on

he will set his own benchmarks.....every child is special! Be prepared to see advances in one area, slow progress in others. & this will vary & bounce back/forth, too!

Approach it all with a smile & a prayer.....due to a degenerative hip disease, we went thru many, many years of P.T for our son. Long road, but will bring joy in the end!

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D.P.

answers from Seattle on

Our full-term kiddo was born with positional club foot and was diagnosed w/ mild hypotonia after our ped sent us to a neurologist to rule out MD. I was terrified. Anyway - he crawled at a year and walked at 17 months. Our PT had us fit him for AFOs at 19 or 20 months, which helped his ankle stability greatly. He's 3 now and is down to one orthodic - and he's running and jumping. (I cried when he jumped for the first time about 6 months ago). He has some sensory issues so we're seeing an OT also, and a marked speech delay (enter the SLP a year ago). He uses some signs but is pairing words with them, and we're recently hearing 3-4 word phrases amongst the "chatter". He's just tested into a preschool in our district where he gets OT, PT, and SLP in the classroom 4x weekly, 2.5 hours/day. It's wonderful, and he realy enjoys it. In hindsight I wish I'd taught him more signs when he was a baby, because communication is by far the toughest right now. But it's coming. Overall, he's a happy, healthy, loving, gentle and kind little boy.

When kiddo was diagnosed, I found a message board on ivillage.com that had dozens of familys with low-tone kids, and it helped me to put things in perspective. Fortunately for us, kiddo doesn't have trouble swallowing. Fortunately for us ... LOTS of things. One family posted a video of their little girl taking her first steps with a walker in her school hallway on her fourth birthday. I cried. And watched it again, and cried some more. I just did a quick search on ivillage and can't find what I'm looking for, but I'll keep searching and post the link to the mesage board if I can find it.

I'm so glad your little one is getting such great help. Thank heavens for good insurance, right?

Best to you and yours,

D.

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B.M.

answers from Detroit on

I don't have any personal experience, but I read a young Mama's blog who does. Her words bless me every day - I hope they do the same for you!

http://www.littlegreenpastures.com/

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J.L.

answers from Chicago on

so glad he is getting therapy...While my second was born completely healthy with no complications...He had core muscle issues and low muscle tone on his left side...He had to do early intervention until three years old and some speech. He wasn't pulling himself up or taking any steps by 12 months old. He was finally walking independently at 18 months with the help of PT! God Bless he will get there!!

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M.R.

answers from Phoenix on

Have you seen a Pediatric Neurologist yet for a definitive diagnoses?

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G.B.

answers from Detroit on

My granddaughter was also born 10 wks early and has cerebral palsy which mostly affects her legs. She's now a community college student who gets around in a wheelchair - a happy, delightful, young lady. The best advice anyone ever gave me was a dad of a severely disabled girl. He said to forget the numbers and not compare her to other kids - just help her do the best she can. Alicia did everything really late but my daughter and I decided the upside of this is that she was a baby longer and we learned to enjoy her just as she was. I took her for years for PT and sometimes OT at Children's Hospital. They were wonderful! They deal with delays constantly and are very supportive and knowledgable. The fact that he continues to make progress is what you want. In the long run, he may catch up and he may not. You won't be able to control that. Just do all you can to help him as he grows and enjoy him along the way.

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P.K.

answers from New York on

God bless your little one. He is getting great therapy. It is so haard to say
when he will sit, stand and walk. I can only say it will happen. I would not
anticipate him walking before 18 months at the earliest. Howevver, he may
just make great strides when he begins to stand. It is just so hard to say.
Try not to get discouraged.

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