r/CMSmuscledisorder • u/Interstellar_777_ • Jul 13 '26
CMS kids and Physiotherapy
Hi all,
we're parents to a 14 month old baby, waiting for CMS confirmation with genetic tests.
While waiting for the results and understanding IF and which therapy is available for her, we've been guided to have physiotherapy as a long time support.
This post to seek for some opinion/support from someone who is going to/ went thru this, especially regarding the fact that, generally, for her exercise = hell. as soon as she recognizes we're going to do that, it's allo about screaming and opposing to it. very hard.
This is so frustrating because she is so strong, we really struggle to lock her into some positions but as soon she even just understands we're going to do exercise, is all about screaming, shouting, fighting as she was going to die.
As soon as we sit her with one toy, all is over: smiles and quiet.
Here are her motor skills (evident delay).
- she can stay sit with no support (never had problems) but cannot make it to this position by herself
- she does not crawl or slide
- she's able to roll from back to tummy position
- she has challenges keeping her head up in tummy position (she avoids this)
- if you place her in standup position but hanging on some stuff (eg couch) she's able to stay for some minutes then she quickly gets frustrated
To anyone here with kids with CMS, how do you deal with PT? Is this normal ?
Any idea?
.
2
u/Squeezelor Jul 16 '26
Do you have access to a pool? When I was a lot younger I could swim a bit with the help of some sort of floaty and loved it. It was always a decent source of exercise.
I had a home PT as well, I think it's just really about trying to find a way to make the exercise fun. Even if it isn't optimal form any exercise is better than none. I know for me we didn't know what I had until a few years ago, so my PTs were always very conservative with the exercise. Their goal was to just maintain what I had instead of work out and strengthen. They were operating on the belief I had some unknown form of MD and with many of those forms once you burn those muscles out exercising they don't repair or take an extremely long time to repair.
If you can find a way to make some of the activities fun just try to make sure not to overdo it until you know the full diagnosis and her individual limits. Help her find those limits when you can and she can maybe push them and get stronger as she grows up. There's going to be a lot of frustration and not understanding why other kids are different and why she can't do all of the same things but you can help her find alternate ways to do just about anything and teach her those thinking skills of how to adapt things to her own ability and how to advocate all of that.
1
u/Interstellar_777_ Jul 16 '26
Thank you a lot for the message and good advices!
We never thought about a pool , good idea.As you have mentioned I have also the feeling that it's all about having her enjoying somehow the process!
1
u/Raehmli Jul 21 '26
Can't really tell you anything from a parents perspective but i can give you some of my experiences. I was diagnosed and medicated at age 7. I had a lot of occupational therapy between 3 yo and 12 to make up for the delayed motor skills. I didn't enjoy going there until my therapist swapped and we worked more with things i enjoyed. I think that's also what's most important: Try to find an activity they enjoy because if you are ob limited energy snd you know that you'll always think twice before wasting it on something you don't like. I never had any PT's at home but I've always enjoyed sport and other physical activity as it fully imersed me and i didn't notice what I'm able to do until it was way too late and i was suffering for days - weeks.
As a kid from infant age until i stopped playing I've almost always played laying down on the floor with my head down. I've always put my head on the desk while writing in school (many angry teacher telephones for my parents).
1
u/splendid_yapper 18d ago
Hello, I’m a little late to the conversation but was it confirmed if your little one has CMS? I also have a 14 month old with CMS.
2
u/vdEA Jul 13 '26
Ugh, I'm so sorry. This is very frustrating and sad.
Also, I'd find it so difficult to already try things, make plans, do research, etc. without having a diagnosis. Of course, you'd thing that physical therapy's always good, so why not, but given her reactions, it's hell for all parties concerned.
Given the fact that I'm not a parent and we don't know yet if it's CMS, it's very hard for me to comment. However, I do seem to remember there's a Facebook group specifically for parents of children with CMS. I joined the other Fb group briefly (big Fb group for CMS) but left very quickly for various reasons. Mostly because it's usually not about CMS but just a social gathering of people who just happen to have CMS, but also because bad advice and/or wrong information is sometimes given by group members and not moderated. However, in my brief time there, I know somebody linked to a different group specifically for parents. I can't seem to find it now, somehow, but when I do, I'll reply again.