Looking for other mums who's children have "Hypotonia"

**Grace3** · 17-12-2005 07:58

Hello,
I have two children who have both been diagonised with hypotonia. I was wondering if thier were any other mums out there who's children have the same disorder.

**WeThree** · 17-12-2005 14:09

Hi Chontel, what is Hypotomia? i dont think i have ever heard of it before.

**caitsmum** · 17-12-2005 16:00

I don't know if this is any help or not but I have a five year old daughter who is hypotonic. She was born at 28weeks gestation and has several other problems.

Her low tone has ment that it has taken a long time for her to reach her milestones. Eg she didn't walk till after she was 2 years corrected. She tires very quickly and has to put a lot of work into acheiving what she wants to.

Physio was very benfical. Lots of ideas like the big ball work, compressions and ideas to use on the trampoline. She is starting school next year so we need to look at how the hypotonia will impact on her ability to keep up and her fatigue levels. We are looking at teaching her to keyboard early on as she will probably not be able to write quick eneough to keep up.

My daughter still has a sleep everyday and I make sure she eats well - high energry, high protien diet as the extra work she puts into her physical activities burns off alot of extra calories.

I hope this has been of some help. If I can give you any more info please let me know.

How old are your boys?

Take care
Therese

**Grace3** · 17-12-2005 18:36

Originally Posted by coopsntilly

Hi Chontel, what is Hypotomia? i dont think i have ever heard of it before.

Hello Coopsntilly,

I would like to say thank you for responding and taking an interest and learning something new.

Basically, Hypotonia is children with low muscle tone. A bit like a rag doll cat. Our children are very flooppy and in my case have to attend physio etc to build up their muscle tone. It doesn't affect their intellect but does make things like crawling, walking and talking harder to reach.

Emotionally it would be great to talk to other parents who have the same disorder, so you don't feel like your doing it alone.

Thanks again

Chontel

**WeThree** · 18-12-2005 03:59

oh ok, thankyou so much for getting back to me

i noticed a mother with a child with the same condition has responded, so i hope you are able to start getting some support, i agree, someone to talk to who is in the same boat would be really important. all the best.

**Lunar** · 18-12-2005 13:26

Hi Chontel and Therese,
My DD has Down Syndrome and almost all babies born with ds have low muscle tone and she is one. I know how you feel and it can be very hard but with physio and ot and a whole lot of determination milestones will be acheieved, in your childs time but they will get there.
Would love to hear more from you both.
Therese, sorry just a quick Q, how was toilet training? I'm trying to get DD trained and would like to know just how much the low muscle tone affects this.
Thanks Kris.

**Grace3** · 18-12-2005 19:24

Originally Posted by EmysMum

Hi Chontel and Therese,
My DD has Down Syndrome and almost all babies born with ds have low muscle tone and she is one. I know how you feel and it can be very hard but with physio and ot and a whole lot of determination milestones will be acheieved, in your childs time but they will get there.
Would love to hear more from you both.
Therese, sorry just a quick Q, how was toilet training? I'm trying to get DD trained and would like to know just how much the low muscle tone affects this.
Thanks Kris.

Oh nooooooo. I completly forgot about the muscles we use when we go to the toilet. To be honest my muscles aren't that great anymore either

Chontel

**will&samsmum** · 18-12-2005 22:28

Hi Chontel.....our 18 month old DS does not have hypotonis but he has a rare brain condition and that has led to low muscle tone. He works very hard at Physio and Occupational Therapy every fortnight and is slowly getting stronger. He has just been given a standing frame and hopefully that will help him stand. It's a long slow process but extremely worth it. We have him massaged once a fortnight and have a reflexologist work with him on the alternate week to the massage....we have found this quite beneficial.

Take care
Emma

**mummycloud** · 18-12-2005 23:15

Hi

My kids don't have hypotonia, but they have hyperflexia which, by reading the other posts, sounds similar.
My 2nd and 3rd child couldn't sit on their own till nearly 12 months because of it. They also have a problem with their joints becoming dislocated very easily. My 3rd child didn't walk till she was 2 and a half because her tendons would over stretch, so she had to go to physio to strengthen her muscles to make up for it

The things that bothored me most about it all ,was the fact that I had to carry around a very heavy child everywhere and it was hard on my back. It was also so sad to see her watching others kids her age running around and she couldn't do it. I was so scared she would never walk and end up in a wheelchair. It was hard work for her to get up and walking, but once she could do it, she was off like lightening..LOL

she's absolutly fine now at 4 years old, but every now and then I have to click her elbow back into place for her

**Michele Crocker** · 30-12-2005 08:21

Hi,

My eldest child who is 12 has low muscle tone. I did not know it had a name. He has been having physio/OT on and off since he was born. He was also slow at doing things. He did not sit up until he was 12 months, he did not crawl until he was 18 months, and did not walk until he was 2 and a half. We had problems with his toilet training and we had to delay his start of school because he was not properly toilet trained.

His motor skills now are still behind what a normal child at 12 can do but he is slowly improving. He has other problems as well like epilepsy which he is on medication for. Even now at 12 we had a few problems with his toileting but at the moment we are on top of it.

Michele
Mother of Christopher, Luke, Melissa, Jayden and Ashleigh(8 weeks)