Hypotonia Support Group

firstly, i think it is wonderful that you are doing the therapies already.
as you im sure are realising none of our kids are the same - we all have unique stories, development and outcomes for this thing called hypotonia. i remember in the early days talking with the pediatrician about our son and he commented that he was low in tone.
i did not know my kid had any significant problem until he was about 9 months and was not sitting up and did not like to even be propped up. he really hated being on his belly too. basically he was a very still baby and very fussy too. he would fling back in your arms arching in some kind of pain or frustration - to this day i dont know what it was but at 18 months now he gets screaming bouts which i cant decipher either.
once he started eating solid food his alertness improved. however he did not really smile consistently until about 12 months. the over riding sense for us was that he was very expressionless. now looking back on the last 18 months i am starting to understand how low muscle tone throughout the body affects everything - speech, cognition and physical development. he literally was not able to suck properly, not able to smile..... and now at a year and a half he is just beginning to get curious about the world. now he can scoot on his tummy and swivel and reach and pick things up and explore where previously he gave the impression of just lying there staring. he has always loved food (you can read my other posts on that topic) and light touch around his face, nakedness, wind, swinging, chewing on everything. it helped me to exploit these joys since he was such a miserable baby for so long.
but things dont stay the same - the progress with low muscle tone seems slow but im learning not to compare and to be patient. the testing for other causes for his DD continues but so far there is no definitive answer for his delays and no medical person is ready to tell us what the future holds for him.
i offer you my support and ear over the coming months and years - keep checking in.

My daughter is 4 months old now and has had the hypotonia since birth. It was a very slow start but over the months she has turned into a wiggle worm with the help of PT and OT. Start the therapy ASAP. She gets both once a week and I believe that has contributed to her improvement. The doctors have been very pleased with her progress. We still don't know what happened. We did all the tests MRI, EMG, blood tests. They wanted to do a muscle bioposy but we refused because she was getting better. The head is the last to get strong I will warn you. She started lifting her head last month. So she is still slightly behind but is catching up nicely. I still would like a diagnosis to be prepared for any future problems. We plan to go to John Hopkins Hypotonia Clinic next month to get a second opinion. Keep your head up it will come with time.

Emma has hypotonia due to Downs syndrome....she was like a little doll full of sand.....you almost couldnt tell she was alive because she just didnt move.....she couldnt hold up her head...lift her legs....or arms or do things the PT said she should be......we got her Thera Togs and in just a few months she made huge progress....she sat at around 8 months I believe and was standing and walking around 12 and she is now 2 and runs and climbs and is pretty much following a typical development schedual......we still have to work on things....stairs....jumping....stepping over things instead of inching around them....but much much better.....
I owe it all to the Thera Togs.......
They tell me we will always have to work on her strength and endurance, for probably the rest of her life but luckily most of that can be accomplished with regular daily activities.....practice makes perfect....

A heads up though......just in case they didnt tell you already....when changing diapers.....lift from the hips not from the ankles.....you can pull her ankle and leg muscles and stretch them out even farther and that will cause problems when you guys start standing and walking.....also no pulling on her....just let her pull on you.....make her muscles work....dont let her use yours......

good luck....

Hi, I am new to the group. I want to share my story with you because I also have lots of questions and not to many answers.
My son is now 13 months. He is a fraternal twin who was born at 38 weeks and 6.5 lbs. So everyhting was normal until he 2 months when we realized he was very flopppy and was not holding his head like his brother. His MRI, EEg and blood test are all normal. But he is not. He has hypotonia and he is not crawling, not pulling up, not walking. He has been going to physincal therapy 2x a week and OT once a week. The PT has helped a lot. He finally rolled over at almost 6 months.
I am worried that he might not walk. Do you know at what age kids with hypotonia walk?
The blood test were all nornal (genetics/ cromosomes/ etc) . the doctor wants to wait and check every 3 or 4 months.
this is very frustating for us b/c we don't know anyone with this condition and we don't know what the future holds for him.

Emma has Hypo and Downs....she was diagnosed at birth and started PT at 1 week old.....my biggest cant live without item had to be Thera Togs....they made the biggest difference and gave us a huge jump start on staying ahead.....Emma is now scoring "average" in her muscle tone and motor skills and they thought she would always be below......its alot of hard work for her... but she is really motivated.....Emma is pretty mellow...not alot of crying and frustration....but she hit almost all of her physical milestones within a month or two of normal tone children.....we had Emma in therapies 2 times a week.....until she started to catch up and move into the normal range now she goes...once a week....and that might even be too much...but we want to stay on top of it.....