Hypotonic son still unable to walk at 3 !/2 yrs

Crystal - posted on 05/11/2011

My son just turned to and has hypotonia and muscle weakness. He still can not sit up, or hold his head up completely. He can roll, and is starting to get up on his knees, but will not use his arms. can any other moms relate? So scary. He is getting therapy and has been since birth.

Manda - posted on 05/21/2010

Thanks to you all for your advice, I loose my patience once in a while, I so want to see our son move on to the next stage. Reading your advice reminds me just how much patience is needed, slowly, slowly we will get there, hope you all do too.

Linn - posted on 05/20/2010

My daughter has hypotonic hemiplegic CP. She started walking with aid about 6 months ago. She is now 2 1/2, and has been in PT/OT since she was 3 months old. Therapy has helped, but one of the things that has motivated her to walk has been her siblings. She doesn't like to be left behind. All kids do things at their own pace. He will walk when he is ready. It's a scary thing especially when you add in the sensory problems. Best of luck to you.

Jennifer - posted on 05/20/2010

I have a son who also has Extreme low muscle tone. He will be 3 in november. He just learned to roll over 2 weeks ago. He can stand with help but has a walker that is designed for him. He is still learning how to get the walker to move with his feet, but it helps him stand so he can get the strong enough to walk on his own. We do not have a diagnosis for our son do you have one for your son? Our PT said he was strong enough to roll over before just didn't get the concempt yet. The motion of doing it over and over help out...but it took month and month...more like over a year...We are having a issue know that no insurance company will cover him because he is almost 3 with no diagnosis...But we cant get any help with out one? Do you have any ideas?

Jackie - posted on 05/01/2010

We used a walker and did lots of PT, OT and Hippo Therapy (horseback riding which uses the same muscles as walking) and at 4 years old, he decided he was ready, now at 10 years old he runs. Each child just has to find their confidence if the physical ability is there. Create a safe environment, and I agree with another comments...you may want to look at another therapist, not because there is anything wrong with the current, but because someone else might be able to offer something different that might help. Good Luck and stay positive!

Michelle - posted on 04/08/2010

My son was born premature and a head bleed which resulted in a brain injury. He has mild cerebral palsy and has hypotonia. He also has struggled with the sensory, propriaception and vestibular issues. He currently is almost 6 and has been walking independently with his walker for the past two years. Everything he does is on own terms and time even though he has been in OT and PT therapy since he was 6 months old. In OT, we work alot on balance......sitting on a board swing so he can spin/rock. He has been doing this for years and continues to do so. I have seen much improvement. He also has learned to reach for things held away from him sitting on this same swing. In PT, we started with a Pacer walker which he was strapped into and learned to move using that. Over many years we have progressed to his Kaye walker which he walks independently with. The best advice is to be patient and continue intensive therapy. Find what motivates your son and use that to your advantage. My son has used alot of other therapies along the way to enhance his ability to walk. If you want to know more, please let me know.

Ashley - posted on 04/07/2010

My daughter has very low muscle tone also. She is 6 and just started wanting to use her walker. We forced her to walk and it made a huge difference. My daughter to would colapse by dropping her bottom down, with us forcing her to stand & walk her muscles have become much stronger. She would walk holding our hands but had no desire to use her walker till resently. I believe alot of it has to do with fear & low confidence since it is new to them & they are old enough to know they can fall. Awesome to hear about your son's new accomplishment thats awesome.

Manda - posted on 04/01/2010

Thanks for your replies it helps to know I'm not the only one out there, just frustrated by lack of NHS help. Something great has happened in the last week our boy has started using his walking frame without moaning and dropping to the floor, we hope it continues x

Angela - posted on 04/01/2010

My twin girls have a rare genetic disorder & hypotonia, they are nearly 3 & still do not walk. They bum shuffle around the house. 1 of them has started to pull herself up & can now climb on the couch but cannot stand unaided. The other one cannot pull herself up at all & doesnt even like standing aided by me holding her. Life is tough at times because with 2 of them we cant do the little things like go swimming etc as I need 2 adults. I think it is a balance thing as well as the better of my 2 is very unsteady on her feet. I pray everyday that they will walk soon. Goodluck...:))

Joelle - posted on 03/30/2010

Hi Manda,



You state that your son has extreme hypotonia. Are you able to switch his physio? Could be that you have the wrong physio/patient mix and a new physio may do wonders.



Best of luck...Joelle

Iridescent - posted on 03/25/2010

Here are two examples
http://www.easy-walking.com/uses/individ...
http://www.valuemedicalsupplies.com/sunt...

Iridescent - posted on 03/25/2010

The issues combined together might cause severe balance problems. Imagine trying to walk if the whole room is spinning! I can't. When I have a major ear infection (which I get too often) I have a very hard time walking, and I'm an adult that has lived with this my whole life. Perhaps a walker would be appropriate (not infant walker, but one appropriate to his age) as it would give stability and help compensate for lack of balance.