My daughter is 3 so cant give you much help,, just wanted to say hang in there and hugs,,,

Hi,
I don't no any adults with hypotonia,but i can imagine what you are going through my two grand children both have hypotonia along with other problems, we can only hope and pray that they are able to lead independant lives when the time comes.
Always think positive and never give up trying to do things to help yourself what works for one is hope for another.

Take care.

Hi Sulli, first of all hugs! i know life seems tough and i know it cant be easy... but maybe you can give me some ideas on how to cope with certain aspects of this condition. my son has hypotonia as well, the doctors also suspect tht the placenta became detached in utero but they aren't sure... just wanted to know which treatments worked best for you? you sound very independent, just looking for the best guidance for my little tyke, and who best to ask than those who've experienced it... do you use a walker or a chair? do you tire easily?..my pumpkin has a weak trunk and core (i think) he sits assisted if not he'd topple over... just trying to be forearmed by being forewarned... many thanks for your time...hugs

Hello, I to am an adult with Hypotonia. That is all I suffer from. I know just how you fell.

When I was younger I was able to me around more and was only hurt for a couple of days. Now that I am older I can't move around as much and take alot longer to get better.

Last summer I hurt my back some how. So most of the summer I was hurt could not to much of anything. I was on strong pain meds. Now a year latter I still have probs with my back I have good and bad days. And take strong pain meds as needed. I need to go back in to Physical Therphy for my back again but I don't have the money to do so.

I to am just so tired of hurting.

My hubby and I like to watch the show MASH 4077 in one epasode Hawkeye looks and bruns and says don't you know what a hero is 99 times out of 100 a hero is some one tired enough, cold enough, and hungry enough not to give a darn any more, I don't give a darn.

So hence I feel we need people out there to tell people about Hypotonia and find out what happens to adults. I don't care I will do almost anything for answers. I have beens wrighting TV shows and telling them about Hypotonia hoping mady they will do a show now this. If they want I would even to now there show.

im an adult living with cerebral palsy, hypatoia ( in my hands) and a miild learning disabilaty. I know how You all feel, frustrates as hell I know I am.

I wish I could drive

Have any of You ever thought about eletrical simulation?

im not an adul with hypotonia but i am 16 and have it and this summer, i will be going to an orthopedic to get issues from my feet and such looked at too. some of my issues like rolling my feet in when i walk can only be fixed by orthatics (sp?) but my problem of how my toes are turned sideways could possibly be corrected a different way. they talked when i was younger about doing surgery and that may very well come up again. i would suggest going to see an orthopedic surgeon just to see if they can help you at all. Hope all goes well and good luck!

Please read Lisa's Story about my daughter with hypotonia. She is 36. Her speech is very impaired and she is now going to speech and language professional. Her arms are weakest but her ballet teacher is building them up. She has poor fine motor skills. I would say to go to the largest teaching hospital in your area. University of PA is great. They have a neurologist/genetist on staff.

Hi, I 21 years old with Central Hypotonia. It not easy, nor will it ever be easy. I currently studying to be a social worker while slowly watching my body shut down around me (legs and arms mainly) and having to have a difficult chat with those around me about independence.

Somedays I feel like I can fight it, other days it like what is all the fighting making things worst. I glad I found this group, I gone a long time not knowing anyone else with the condition

Hey, your story sounds just like mine. I was born in 1967 and they called ime a "rubber baby" back then. I know exactly how you feel. I have had knee surgeries. They didn't really help but it was a long time ago. Treatments might have gotten better since then. To tell you the truth I had a really bad experience with my orthopedic surgeon when I was young. I have bad knees, flat feet and all the rest of it. Your the only other adult I know with it. It's hard. People don't know how hard it is! I'm always exhausted with no energy. I have to wear knee braces because of how my knees are. And now I have Plantar fasciitis because of my flat feet. It is so painful.
A lot of people have no clue what hypotonia is. They want a label like MS but hypotonia is a cover all for many diseases. They never found out what caused mine. I had to wear legs braces and special shoes when I was little. Can they really force someone's​ feet NOT to be flat by making them wear painfully ridiculous shoes?!! Anyway, I had a son a 10 years ago and he has it to. I feel so bad. It wasn't until after he was born and the doctor's explained about hypotonia that I stopped blaming myself for being this way. Somehow it was always my fault. I think my parents thought if I lost weight it would fix everything. I almost killed myself trying to get fit and lose weight! One thing they don't talk about is weight gain because of low muscle tone and all the other complications. It didnt matter how much I exercised I barely made any muscle! If you can't burn calories you gain weight!
Anyway, I just wanted to let you know you're not alone. If you threw up a lot as a kid that has something to do with it to. My son has something called Cyclic Vomiting Syndrome because of it to. I threw a lot when I was little to but I never realized it was related! I have a delayed response to things to sometimes. I kind of like it though. I don't flinch easy so I look brave. Hehe! Actually my brain is just a little slow telling my body to react!