DMO orthosis- anyone out there with experience of these lycra suits?

[spur]

Hi there,

dd has GDD and just started wearing one of these lycra suits. Our OT has no experience with them and I wondered if anyone else's dc has one?

we are having some good and bad effects.....

[HairyMaclary]

We had one, I couldn't praise it highly enough! It worked really well for DS and he had major carry over after a couple of months so we saw the effects even when it wasn't on. He had a full body one, long arms and legs - he had a straighter posture, less sissoring with his legs, more open chest, ie his shoulders were back, and over the time he wore it his leg muscles relaxed and his heels came down.

DS has spastic diplegia CP so is stiff in his legs but has low trunk tone, the suit seemed to relax the stiff bits and give good feedback to the floppy bits.

The only problem we had was getting it on. After a while he hated it! He outgrew it in 6 months and we didn't get another as the carry over was still happening. I often wonder if I should go back and ask for a new one but I think we are managing the symptoms in a different way now.

What are you finding?

[spur]

Hi Hairy,

DD has weak core muscles, poor balance and sensory issues etc

Well we the full suit to knees for a week but it was too big round the middle so sent it back and now its a snug fit.

The difference although subtle was instant.
I think dd is finding it really confusing still.

I saw her bend down to pick up a toy today which she has never been able to do before. SHe usually holds on or squats down/ its. Her walking is better and less wobbly. She seems to really enjoy the sensation of wearing it and enjoys putting it on. She is also vocalising more and more. It definitely gives her a better posture and pulls back her shoulders. It also seems to give her confidence with trying to run.....so it seems amazing and we are really lucky to have it.

The problem we are having is a that the toileting hole has velcro which has rubbed dd's inner thighs. Its bulky and it pushes the nappy out making a bulge between the legs ( sounds lovely!)

Its really tricky to nappy change with it on. Also it seems to bother her at mealtimes and when she is on the potty.
I was curious as to whether or not this was normal. I called the OT today and she had no idea about it.

DD had a huge meltdown at nursery today after a nappy change (never happened before) But she is non verbal and cant explain why she is upset. I noticed red marks on her thighs so am assuming thats what was hurting.

Glad you had a positive experience thats really nice to know.

[Mummytoaidyn]

Hey could someone please tell me about more about theses lycria suit please my son has just been measured up for one but we haven't been told what wrong with him all we been told that he has loose joints

[thereonthestair]

Hi. Our ds (also spastic diplegia cp with a weak core due to prematurity) had shorts when he was younger, and had a suit since Christmas. Tbh shorts were a waste of time. Maybe wrong time, wrong place. I think he was too young then at 18 ish months. Also at the time he wore real nappies which didn't help as the suit manufacturers weren't so good with the fit, and in ds case what matters is his hips. So we ditched it when ds grew out of it.

Anyway a year later and after an interminable wait we got back to the Lycra clinic and ds had a suit. Positives it has helped him stand up straighter, and aligned his hips/trunk. It also helps stop him scissoring sworn he walks (crossing one foot in front of another). It also does have some carry through. Negatives, he hates it! The nappy change toile ting is a disaster and one of our physios has effectively said give up while potty training. That's on hold at the moment anyway though as ds is sure nothing happens so he doesn't see the point. But rezipping is difficult and ds says don't hurt me at every nappy change. We catch his skin about once a week I think. The nappies do kind of shrink down though. Other negtative is in theory it is hand wash only. I ignore that though and wash on our hand wash wool cycle on our machine. 4 months in and it's fine. Also has to be dried naturally but radiators and hair dryers in desperation, do work!

Our Lycra physio says that optimum use is about 18 months to 2 years, ideally in a block and the muscles learn, don't know if I believe her but it's a small issue so we are running with it for the moment. But he does need refitting again now, and there will be a delay.

Does your dd have reflux or any digestive issues? I ask because we take the suit off ds when he is ill as he gets ashtma and that triggers reflux, which in turn is worse when he has the suit on as it does squeeze his tummy. The paeds all agree it comes off for illness.

[Galena]

DD had lycra leggings. She also has CP - spastic diplegia. They helped with the inward rotation of her legs and stability, etc. The toileting was a disaster. We were trying to toilet train her and the suit pushed her thighs together so much that the wee would come fountaining out from between her legs and land on the floor in front of her! If she was wearing a nappy then yes, it stuck out of the hole.

She now has a TAP splint because, for her, it's just the inward rotation we need to work on (and she is now daytime toilet trained!)