Down Syndrome and Hypotonia

[Eternity84]

My 2 year old son has Down Syndrome and hypotonia and hypermobile joints. He has been crawling since a year old but will just not get on his feet! Is there anything I can do to encourage him?
We have Portage once a week but been told he won't get physio until hes a bit older. He is only small, weighs just 19lb and still in 6-9 months clothes so maybe he will just do it when he's bigger?
Thinking ahead for toys etc for Xmas and any ways I can encourage him to use his feet. He only seems to be able to stand by locking his knees so he's stiff as a board and he doesn't have the balance to stand by himself without being against something.
Any advice or suggestions? Am currently 5 months pregnant and suffering from SPD so carrying him everywhere is tricky. He's a good climber though lol so he's pretty independent
Thanks.

who told you physio isn't an option? I'd be pushing for physio for him, it made a massive difference for dd3 who has a different genetic syndrome but hypotonia and hypermobility. A good pair of sturdy boots might help support his ankles if that's an issue and swimming is always good but really you need a physio program to work on stability

Thanks. They said he has to be 30 months before he starts physio so 5 more months!
I was considering supportive boots but as he rarely gets on his feet I not sure will help lol.
Can he have hard soled shoes even though he isn't walking as he still wears crib shoes. Thanks

My son is 3, nearly 4. He has downs. He had physio from he was very small (tho we don't have portage) where I am. My son has only recently started to walk. He has peidro boots although it took AGES to get them. I'd push for the physio now. Does he crawl or cruise?

rubbish! Physio is/should be given based on need.
DS2 had physio from birth.

Ask them to show you the policy that has this blanket ruling in it, I bet they can't.
In the mean time crawling, climbing, swimming any exercise at all is helpful.

also, ds2 had piedro boots before he was walking, they helped with ankle stability which helped him to stand

Great thanks. Will defo push more for physio. It's his pediatrician who said 30 months before they refer them to physio. I been looking at piedro boots but dunno where I can buy from. Any websites?
Yes he crawls and cruises but tends to lock his knees when standing so kinda doesn't bend to walk along furniture. Just all stiff lol. He's defo a climber, can easily get on and off sofa and in and out his chair. He's lightning fast on his knees and a good bum shuffler lol just refuses to use his feet lol

Aww my dd10 has downs and was an amazing bum shuffler to!

piedros are extremely expensive here so I'd go for a stiff pair of boots from the high street to start with, something like this or this would be good as they're not too heavy mymatemax is spot on, do push for physio now.

Another one to say push for physio! My son has hypotonia and some hypermobile joints and was referred to physio at 5 months when the paediatrician noticed he couldn't hold his head up very well. Has been having physio ever since (now 18 months) and has just been fitted with piedro boots (free on NHS). He has been cruising round furniture for a while but not walking unaided yet. Before the piedros came the physio advised us to just get some decent ankle boots from Clarks so you could try that for extra support.
I can't believe the difference in provision of these services in different areas when it makes so much difference to the children. We are grateful to all that has been provided to us - hope you can get physio involved very soon.

I don't know if it would work being pregnant but I have a HippyChick Hip Carrier that really helps take the strain/weight when I'm carrying him.

OP I have just been reading a blog post on noahsdad.com (sorry, can't work out how to do a proper link) all about Noah (who has ds) learning to walk and what they did to encourage this.
My dd is 3 months old and has had monthly visits from a physio since she was 5 or 6 weeks old.

My son is 19 months he has had physio. Was reffered at 16 months as his brother has dyspraxia and it looks like the baby does too

Hi, my son is 5 and also has DS (low muscle tone and hyermobility) Ds didn’t walk until almost three and was an avid bum shuffler, never crawled. I’ve always had to push for pyhsio for ds. Where we live they are very hands off with children with DS and won’t see you unless your child has issues with weight bearing at a certain age. Even then it’s not regular pyhsio and things like peidro boots I had to really push for.

TBH I got more from portage in terms of exercises to do with ds than I did the pyhsio. Also friend gave me a really good book about gross motor development in children with DS.

Gross Motor Skills

I remember when ds was around this age he had one of these activity tables and he could practice low and high kneeling, pushing to stand and standing with support at the table. Like this one ( really motivated ds)

Activity Table

Was the perfect height as ds has always been on the small side for his age.

We were put off physio too when dd (at that point without a dx) wouldn't weight bear at one. Eventually we found she had hip dysplasia (with a high dislocation) and a chromosome disorder. She had an op and spica cast for her hip at 19m, cast removed at 22m and first pulled to stand 6m later. She is walking short distances with a frame now aged 3.5. We have nhs physio now - and
Piedros, but also see a private physio who is brilliant (and has also helped me push for more from the nhs). I wish I had found a private physio earlier.

Dd's lack of standing / walking was because of her tone rather than her hip btw -the hip and it's treatment just exacerbated things.