low muscle tone

Patricia - posted on 06/11/2011 ( 3 moms have responded )

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M y daughter has a developmental delay and low muscle tone. We do early intervention since she was 9 months. She now could pull to stand, craw and almost walk at 21 months. My doctor told me because she is progressing we should hold on the neurological exam. Since the only thing we could do for it it's therapy and we are already doing. She only eats pure food because she doesn't know how to chew. I feel a little lost sometimes and overwhelmed with everything. Any advice??! thank you!;)

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Caroline - posted on 07/06/2012

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My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, stayed in hospital 4 weeks, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, drooled constantly, developmentally delayed, frequent body tremors, some seizure like episodes, kind of in a daze all the time, clenched left hand, choking on her food, speach problems and she was taught sign language, left side weakness, muscle spasms etc. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how it’s made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt, after one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. She began to thrive. I was elated!

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Natasha - posted on 10/26/2011

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it is true that all you can do is therapy, but with a diagnosis that fits (harder to get than one would think) it makes understanding and tayloring the therapy to the best route and way sooooo much easier! My son has low tone and has been diagnosed with proximal myopathy, oral apraxia, high adolaise (still don't know why...), developmental coordination disorder (including sensory problems), hypotonic (extrapyramidal) cerebral palsy, spina bifida oculta. Using all this information we finally have been able to get insurance to cover the therapy my son needs! So if you aren't getting the therapys you need or they don't seem to be doing much because there is only a vague plan, then push for a more concrete diagnosis! Ask anyone to tell you things they might observe - took a speech therapist to notice his swallowing problems due to low tone in his esophagas - and she noticed it when he was drinking a cup of water..... sometimes other people notice things you take for granted or think are "normal" as they are normal for your child :) (personally i think no one is ever truely "normal"!)
Also see if there is a sensory integration disorder group around, sometimes they are associated with autism groups. The one we have here has been a big help as has the MDA clinic. THe normal neurologists focus mainly on things like epilepsy, finding one who knows muscle stuff is hard! The first one we visited who found the high adolaise, actually had the nerve after sitting for 2 hours in his office to google high adolaise and print us a page from yahoo answers as an answer to what high adolaise means..... i payed $35 for that visit and never returned!

Michelle - posted on 06/12/2011

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i would change doctors! my son had the SAME thing plus other symptoms and the only reason we went to see the geneticist is because my twin sister has mitochondrial disease. Sure enough they did the blood test and he does have mitochondrial disease a form that hasn't been seen before. Try to get in with a pediatric geneticist and tellt hem what is going on, get into see developmental pediatrics they are awesome we have speech therapy special ed teacher and physical therapy for my son. Its good to find these things right away and testing takes a whole lot of time so you want to work on the other things in the mean time. My son had the same issues with food (hes now 2) he couldn't manipulate the food to chew because he couldn't organize those muscles to grow with speech therapy it helped so much now he eats pretty much anything he wants, but yeah definately get into see some doctors and have the county come in and evaluate for services to see what they can provide. And if they DO find something just remember it isn't the end of the world, most of these things are overcame with therapy and time, and who knows there might not be anything wrong some kids just develop slower then other kids but if i were you i would go see a doctor!

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