Arch

I'm sorry you are facing this. As if cranio wasn't enough! I suppose it could be related. Don't know if this means anything, but I have a friend who has a little boy who was not doing any of these things at 18 months. She figured out he had sensory processing disorder and starting seeing PT who showed her skin-brushing and stimulation that suited his needs. He was walking in a couple of months. Might not be AJ's situation, but certainly something to consider. Hypotonia is a "catchall" term for low muscle tone. It can be caused by many, many things. Has your pediatrician suggested anything? keep us posted on his progress!

Hi AllisonThanks for posting and sharing the info about your friend's son. We are starting his Physio sessions this evening. He has been diagnosed with mild hypotonia for now, so hoping Physio will help. Will also keep the sensory disorder in mind as well. We will be going back to Vienna in June for his follow up so hopefully we can get a more detailed analysis then, here things are not very developed on that front. Thanks again and will keep posting.

Hypotonia is tough, my daughter with special needs had severe hypotonia. Still, at almost 5 years old, has low muscle tone. She started walking at age 3. She also had a chromosonal syndrome though. My son, Jack, who is 9 months old, 3 months post op, was a month early. All of his milestones have been late. He just started eating any baby food, but barely. We actually had him tested and they said he may have a little sensory issue. Two weeks ago he started rolling and sitting. He doesnt have low muscle tone though, he's been bearing weight on his legs/feet since he was newborn! And his neck muscles are great, we've had comments since he was newborn about it. When I told our surgeon my concerns, he had said that it was most likely the fact that he was 'preemie.' And that is what our pediatrician has warned from the get go, to expect delays. Yes, I am interested in how it does for him. You can do exercises for him at home that will help him tremendously, ask your therapist (I am assuming that is who the Physio is) for ideas.

Hi, thanks for your comment, very useful. AJ is sitting well, eating well, rolled over ahead of his time and can bear weight on his legs. In fact he loves to stand and play...with a bit of support from us as he is a bit wobbly still. We are doing some exercise that the therapist has started him on at home these days. So now he's getting from lying to sitting position with help from us but is learning to take his weight in his arms. Perhaps because he too was 5 weeks early he's just delayed and I am just panicking, but the exercises I guess will do him good anyways. I guess the best thing to do would be to wait what docs say in Vienna.. But your post has been very reassuring and helpful, so thank you again. Will let you know how it goes for him.

My son was born at 37ish weeks and started having seizures right after birth. He has diagnosed with hypotonia very shortly after birth (maybe 1 month?) He was diagnosed with cranio at 3 months and had surgery at 5 months. He will be 1 on June 3rd. He's been in PT, OT, & Speech since birth and that has really helped him. I notice a difference after his therapy sessions. He's still not crawling or pulling up but he's trying! The best thing you can do for low tone is get him together with a PT and do the exercises prescribed so you're already doing what you need to do it sounds like. Good luck!!

Simon was diagnosed with low muscle tone (hypotonia) around the time of his first surgery at 6 months. After the surgery, he started PT and OT about 2 months later, and he quickly caught up. He was also underweight, and he recovered on a ramped up diet. I do not have official confirmation, but I strongly believe that the hypotonia and cranio were related. Have you talked to the neurosurgeon about it?

Thanks again for your comments. Have found them all so very helpful. We are doing PT but what is OT?. They say they cannot do speech therapy for one so small...so am pretty lost on that front. Is there a website where I can learn more about the kind of exercises needed to be done for hypotonic...one that will show me how?

Originally Posted by Arch

Thanks again for your comments. Have found them all so very helpful. We are doing PT but what is OT?. They say they cannot do speech therapy for one so small...so am pretty lost on that front. Is there a website where I can learn more about the kind of exercises needed to be done for hypotonic...one that will show me how?

My daughter started speech therapy at age 6 months old. They start with oral motor. OT is occupational therapy, which works more with the smaller things, playing with toys, picking up food to eat, etc. A lot of times, the OT would do the same as the PT, like getting her to stand while playing with some toys. I am not sure where you could find what to do. It's basically play, but with more structure. Your physical therapist should be able to give you more information.