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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Children's Physical Health
/ Hypotonia Support Group

New to all of this

AS81
AS81

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 her swallow isn't safe. I'm scared as to what all this means for her and for us as a family. I'd love any advice on managing the initial diagnosis and any positive stories. Thanks.

TayLynn622
TayLynn622
Hi! My daughter is 17 months old and has Hypotonia as well.. So they must be close in age!
We have her in PT & she has been in it for a few months now... Her main issues are in her legs... I would consider her a mild case of hypotonia...
She cannot walk yet but is getting close.. she doesn't say many clear words id say about 10-15 words but babbles ALL THE TIME!
They have yet to find an underlying cause for it..
Id love to connect with you and stay in touch! Maybe we can help eachother answer some questions lol
Anyways ill add you as a friend please message me :)
Hopeforsavannah
Hopeforsavannah
Hi ladies I'm also in the same boat I need a couple mommy's to talk to you about this I have nobody here in California that knows what I'm going through. I feel like even the doctors I ask are no help. My daughter Savannah is 10 months old and her hypotonia was diagnosed at Birth. Which really scares me because I just learned that I guess hypotonia is secondary to a bigger issue and they have yet to find anything all tests come back negative. She's currently in physical therapy and occupational therapy and was having trouble eating choking on all of her food and she's already had pneumonia so now they're suggesting she's aspirating her food so she's going in for that swallow test in a couple days. My daughter still cannot sit unsupported she's very low tone in her back neck arms and legs.. she just seems to always be kind of out of it but other times completely acting like a normal baby. On top of that she has multiple ear infections and skin is extremely sensitive and is already had one severe allergic reaction to some food that we still can't figure out what it is. She's at radys but I feel like I got to pull teeth to get her referrals anywhere I don't know why these doctors won't test for something further. My daughter has a physical tomorrow so I plan on bring a huge Alice and just really try to get some answers from the doctor I know it's hard to pinpoint why she has this issue but come on I'm going crazy here I'm sure you both understand. Then on top of that they tell me she's disabled and therefore had to quit my job due to all of her doctor's appointment she has during the week and her constantly being sick that all the sudden now we don't have any source of income. So now they're saying need to file for Social Security disability IHSS oh my God it's a mess please contact me ladies I'd love to chat so much more to say maybe we can share stories and help each other out with different things that might be working for your child. We got to get these kids through this much love ladies. K.sibbing@yahoo,com