My 12 year old son has had mild hypotonia since birth and I just assumed it had something to do with his difficult birth--cord wrapped around neck, heart monitor showed weak heartbeat and then it stopped right before he was delivered with forceps. Once he was out, he seemed okay, but his muscles were a little weaker than other kids' muscles. At 12 months he had a 50 % delay in gross motor skills but he was 50 % ahead in receptive/expressive language. He did not get OT or PT because his primary care physician at the military base would not authorize it. I don't know why.

My son didn't have the strength to walk until he was 18 1/2 months old. His core and leg muscles always seemed a little weaker than the other muscles. His mouth muscles were not affected at all. He always talked a lot and has a high verbal IQ. He was diagnosed a year ago with developmental coordination disorder and dysgraphia but he is not clumsy at all when he dances in musical theater until he starts getting tired. He does not have the endurance other kids have.

He performed at our state fair with his musical theater group and had to leave immediately afterward because his legs and feet hurt too much to walk around the fair. By the time he walked the quarter mile back to the car one of his feet was trembling as if the muscle had been overused.

My son was also diagnosed with scoliosis about a year ago.

The neurologist is ordering an MRI and a nerve conduction test but he says that we still might not find answers.

I worry that it might be something like central core disease which could make going under general anesthesia, if he ever has to have surgery, fatal. We were told if the scoliosis bracing does not work he will need surgery so I want to know if he has this but don't want to do a muscle biopsy.

There is no history of hypotonia in our family but the neurologist says it is possible to have a genetic mutation that would cause the hypotonia.

My 36 year old daughter with Benign Congenital Hypotonia also has scoliosis and I have her checked all the time and it has never gotten worse.

My Daughter was born with hypotonia... she didnt move at all when she was fist born other then squeezing our fingers with her hands. She was sent to the NICU at The Childrens Hospitol of Philadelphia. They performed every test possible. Her genetics came back normal... everything came back negative and normal. She slowly began to progress and once she was able to drink from a bottle (instead of from a feeding tube) we brought her home. She entered into early intervention (pt) and is now 10 months old a progressing beautifully. She is almost exactly where she is saposed to be with her gross motor skills. She never had any problems with fine motor skills or cognition. About a month ago her pediatric nuerologist finally recieved her MRI report from the childrens hospitol and he saw something they didnt. She has cerebellum vermise (check spelling) Basically her cerebellum is smaller and taking longer to develop... he cancled the muscle biopsy we had planned and told me she was going to be just fine. So far he is right... she started sitting up on her own this week and her head control has improved so much. I would definately get as many opinions as you can... especially with the MRI... have others look at it. Not having an answer was agonizing for us... and not having an answer means not knowing what to expect for the future... good luck. I hope you have some answers soon!

My daughter's hypotonia came from the cerebellum, also. It is the area that controls muscle tone, fine motor and expressive speech.

My son (age 3) had severe hypotonia at birth slept through feeding times, and failure to thrive. Very low gross motor skills, slightly below average fine motor. He was very late crawling, but no delayed walking, he actually walked before crawling. He was also tongue tied like the poster aeospot's daughter. He has high arched feet, seems dizzy often, and falls down (stiffly, like a tree falling) a lot. He has a vitamin B12 uptake problem, which the doctors said is just a symptom and not the actual disease. He had genetic blood testing at 11 months, and that found a duplication in the 8q21.3 chromosome(section?), which has no known disease associated with it, therefore no true diagnosis. However, doctors have said that his symptoms are consistent with a mitochondrial disease.

There is some good news, early on he responded AMAZINGLY well to vitamin B supplements, and several other supplements to assist in uptake, it was like a whole different baby. His balance has been somewhat treated with shoe inserts. A combination of OT and PT have helped a good deal. He is still behind in milestones, but much improved over birth. Recently, I have noticed a decline in the effectiveness of the supplements, and a slight backslide in some motor skills. He has also begun to develop crossed eyes when he is especially physically tired, along with a increase in intensity of his other symptoms. I have considered the muscle biopsy, and will be talking with his doctor about it.

Many of the previous posts are from several years ago and older children, can anyone tell me what I can expect next, and what treatments have been successful?

My daughter is 5 and was diagnosed with Hypotonia when she was 4. She did just about every test under the sun with the exception of an MRI and Muscle Biopsy. Her Neurologist said the Hypotonia was a Muscle Disorder and not a disconnect between the brain/muscle. I think the way they are able to tell is basic reflex tests but I am not exactly sure. Through the testing they found a chromosomal disorder that actually comes from me. The geneticist says this is the reason for the hypotonia. I am not 100% convinced since I don't have hypotonia but it does make me feel better to have an explanation. Her Neurologist also had a scan of her kidney's done and sent her to a Cardiologist. Heart and kidney issues are common in people with muscle disorders. Both came back fine but she does need to see the Cardiologist every year to make sure her heart is growing normally.
My daughter's weakness is in her trunk, hips and shoulders. She does PT, Swimming and Ballet. Which all help her tremendously but we have to be careful not to over do it. She used to do Gymnastics but she got to the point where she couldn't keep up with the kids her age and the group with the younger kids was just not working for her. Prior to this it helped her a lot. I find now the swimming is the best therapy. It is not hard on her joints (she has loose ligaments) and I think she feels a sense of freedom in the water.
My daughter had every developmental delay under the sun. Eventually she would crawl, walk, sit up, etc. She also had lots of breathing issues and reflux (which she still gets when she is worn out). I also find that some times she has been able to keep up with kids her own age and then other times she is so far behind it scares me! I think this is why it took her so long to get diagnosed.
I have to say looking for a cause is worth the effort. It eliminates so many worries and can also help them get support in school. If you don't find one though I think you need to continually advocate for your child and take note of any little set back or change. We as Parent's know our kids. When something is wrong they give us all sorts of ques that tests or doctors can't detect. That is why we can tell if our child has a fever without taking their temperature.
Hang in there.
www.hypotoniamuddle.blogspot.com

smumm,
You said the cause of your child's hypotonia is a genetic muscular disease. Could you share the name of that specific disease and if you have any other children. Just curious if they have it too. My daughter is 15 months old and we are in the beginning stages of testing. Just had her blood drawn to test for myotonic dystrophy which comes from the mom's side. I've never had any issues either. Thx

My daughter is 15 months old and we are awaiting the results from her MRI and blood tests. Results are slow coming in and it feels like it has been a long time (since she was 12 months old) of waiting to find out what hypotonia means and what it means to her future development. In the meantime she was been going to PT and taking swim lessons. It has helped a bit, but not so significantly that we have felt out of the woods. We have turned to craniosacral therapy and feldenkrais work - both of which has offered us more insight into her condition and potential than anything else has. We plan to continue with all avenues that show results. Just thought I'd add these therapies to the stream of conversation since I haven't seen them mentioned yet. It feels like we are still in the beginning stages on this journey - and reading everyone else's posts is really helpful! Thank you everyone - please keep up with updates!

Hypotonia can be its own condition, Benign Congenital Hypotonia. I have it and I have no other diagnosises. Hope this helps

Just found this forum after googling hypotonia with no diagnosis. My wife and I had our first child- Henry- on May 5th of this year. The closest hospital where we live that can deal with more serious issues is the Children’s Hospital in Milwaukee. So far they’ve taken excellent care of him but they told us his genetic testing only has a 35% chance of coming back with a diagnosis. We were told there are likely many genetic abnormalities that can cause hypotonia that simply haven’t been discovered yet because they are not common and therefore the genetic sequence is not observed frequently enough to confirm an abnormality. Everything he’s been tested for has been coming back normal except his EMG which showed that his muscles may have an issue but his nerves are fine. This confirms what the doctors have been suspecting but still no specific diagnosis. We were told he has some form of myopathy and that the severity and specific hurdles he will encounter may vary depending on what specific myopathy he has. As of now he’s on a ventilator hopefully coming off this Thursday. As many others have mentioned PT/ OT has helped tremendously but my wife and I are just worried for what the future might hold for our little guy. Anybody have a grown child that can share their experience ?

I don't have a diagnosis of what causes my hypotonia. I do however have aspergers