Hypermobility questions

[Kelly1978]

We finally got ds1 a physio assesment and she has said that he has hyperlaxity in his joints and she thinks that this also explains his other develpmental problems - due to tiredness and frustration.

I've been doing some reading since and I'm wondering if he may have hms. I tried some of the tests online and ds can bend his fingers right back, almost touch his arm with his thumb, touch the floor with his knees straight and hands flat, etc. He walks with his toes pointing inwards, and if he is stepping up high into something like the car, his foot bends completely and he stands on his ankles.

Would the physio have checked for that? If not, how would I go about getting him checked for that?

He's no longer bad enough for physio, so we won't see her again, though she said he should have had it earlier on. He will be having OT.

HI Kelly
My ds2 has CP effecting his legs mainly but also has joint hypermobility particularly in his upper body the combination has always made movement hard work & he tires easily.
The OT should look at his joint mobility & how any problems are impacting his life, they may also recommend exercises for fine motor skills, particularly scissor skills & thing that require a good degree of control.
Perhaps you could ask the OT if she feels your ds would benefit from ongoing physio, does your DS have a paed you can discuss this with because they can always request an additional assessment.

He has a paed appointment on tuesday, (review is due). He is going on the waiting list for OT at the local clinic or wherever, but I've been warned that is very long. But after his teacher heard about the results she applied for him to get OT at school starting in a few weeks, and I don't think I will be there for those. I think I'll ask if I can go in though, when they visit, at least the first time. I need to know these things to support him at home in any case.

So would it be the physio that would dx hypermobility? Or do I need an assessment from someone else?

Also can I ask if your ds2 has behavioural issues due to his physical problems? ds1 has been delayed to the point where he was suspected to be autistic, and now although he has improved a lot, he is still rather socially immature, and speech delayed. The physio thought that this could be due to the effort he is having to put into the physical side of things, but I jsut want to be sure.

Our OT waiting list is very long also but IME once ds was on their books they have been very good.
Our PAED has always given any formal dx but the physio has provided reports to help the paed with the dx although the physio does comment on the symptoms as they present, so she may comment on his range of movement in his legs & use terminology such as hypermobile (upper body) when discussing him with us on an informal basis.
Our ds does also have behavioural issues & GDD although like your DS this has improved & he seems to be catching up with his peers in many ways, his speech is almost age appropriate now although he is currently undergoing assessment for anxiety & compulsive behaviours though he is not thought to be autistic??
DS2 was born at 28weeks so his problems have always been attributable to his prematurity although his physical delays certainly left him frustrated at times.

thank you so much for that, I will go armed with some info I've found and talk things over with his paed on tues then. Fingers crossed!

How old is your little boy? ds1 is 4.5. His speech is still very slurred and unclear at times, and often mispronounced. We're off to the speech therapist tomo. After years of trying to find out what is wrong and being fobbed off, we're finally getting answers and help.

ds1's fingers are particularly bad, for example, he can't hold a normal pencil properly or use a knife and/or fork. dt1 is better than him, and he is over two years younger. I'm really hoping OT will help with that.

Kelly
ds2 is 4.2 his speech is still difficult to understand at times, but so much better than it was, at 3 he was completely silent, he is just having SALT reviews now to monitor his progress rather than any therapy.
He really struggles in social situations & particularly if there are other kids running around, he finds it overwhelming.
He struggles with a pencil too, his grip is OK but very weak so can't press hard enough to make much of a mark on the paper, same with a knife & fork he can hold it OK but can't get enough pressure to cut very well.
I take it you don't have any real dx or cause of your little boys difficulties? Hopefully you can get the help he needs now. His school sounds like they are on the ball though.

Hi Kelly. My DD has hypermobility, low muscle tone & dyspraxia. She has had trouble with her speech, very unclear with her pronouciation. The physio got her to try moving her tongue and to my great suprise it would hardly move up and down and side to side and it became quite obvious at the point why she struggled so much with her speech. She does struggle with her pencil grip as her fingers are so bendy, but the dyspraxia comes into play as well I think making it difficult for her to know how to hold it in the first place. The other thing that makes it difficult for her is that her shoulders are very mobile, so she has to fix them before starting writing.

OT has been very helpful for things like cutlery and writing and she is improving as she gets older, she's 8 now.

thanks for replying chocolateteapot. It's really interesting what you say about your dd's shoulders. I hadn't really thought about that affecting writing. How does she 'fix' it? Ds's shoulders are very loose, something I've always noticed from picking him up. I've never been able to easily pick him up from under the arms, as his shoulders jsut sort of swivel straight up.

I dont think hypermobility on its own is always a problem - gymnasts are hypermobile, but have the muscle strength and control to make use of it.

It will be a problem if associated with dyspraxia, developmental delay, any form of learning difficulty. Mainly because the abilty to control the body and motor plan will be impaired to a greater or lesser degree.

Lots of children with handwriting difficulties have hypermobuility in their hands - makes the grip difficult and tiring.

There are also some syndromes where extreme hypermobilty is a feature. I cant remeber exactly how many areas there are, I think 10 different joints have to be hypermobile to have "clinical" hypermobility, but you can have certain joints affected more than others.

TBH, physio would probably only make a big difference if you were going to do a strengthening programme religiously until you noticed a difference.

With the ankle thing, have you tried getting a referral to a podiatrist or orthotist, as supportive boots or orthotics to go in his shoes might help.

DD's shoulders do the same when I pick her up. If you watch her about to do something like writing or cutting you can see her visibly tense up her shoulders before she starts. I think DD's speech problems were likely to have been caused by low muscle tone, though I have never had that confirmed.

My Mum was really good at gymnastics when younger and without doubt is hypermobile in some joint. But DD's causes problems because it in conjunction with dyspraxia.

the physio didn't think that his ankles were bad enought for orthoptics, but now she has said it I can see it is quite pronounced, so I'm going to keep an eye on it. They looked at him barefoot, but once he gets shoes on they turn in a lot more.

Went to the paed today, she confirmed he does have hypermobility and she is still concerned that he may have asd. I had pretty much convinced myself that all of his problems were down to the hypermobility, but it's back to wait and see really. She wants to watch how he is between 5-7 years old and think that will confirm if he is on the spectrum or not.

They also think that he has issues with awareness of where his body is (maybe dyspraxia?) and hopefully the OT will be able to tell us mroe about whether it is an issue.

It's so frustrating, I thought we had an end to the constant questioning and wondering what is the cause of his problems. I feel quite shocked really, because I didn't think she had big concerns anyway. I guess I got used to everyone else making the comments of 'oh, don't think of him like that' and 'stop comparing him to his sister, he's a boy'...etc!

Hi Kelly
sorry you are having a difficult time, it is frustrating just when you think you have the answers something else is thrown in.
You know your little boy better than anyone so stick with what you believe. Those that are completely dismissive maybe just trying to reassure you & the paed just covering all angles.
I spent yesterday at CAMHS having being referred by CDC regarding ds2's routines/anxieties & obsessions we didn't get any answers either but I think I have just come to accept that as long as we ensure he is getting all the support for both his physical disabilities & his emotional needs then a name or dx isn't really important.
That said if you feel that an explanation or a dx will help you or your ds could you ask for a multi-disciplinary assessment, these I think sometimes can reach a dx quicker, just having all the professionals in the same room seems to be more effective.

ds has had a multi disciplinary, a year ago - it was the results of that which pointed at asd to start with but the paed didn't think it would be helpful to dx him with asd at that stage. I think you are right though, at least now he is getting support and hopefully getting a named dx won't be so important. His paed seems very unwilling to label anything in any case, prefers to look at jsut what help he needs. I think it's prob the right approach really, but doesn't help when other professionals try to tell me he doesnt have any sn.

It is frustrating though, and I'm sorry you didn't get any answers neither.

Sorry Kelly, I didn't realise your ds had already had multi disciplinary..just trying to think of anything that might help.
His Paed does sound good.
Your ds sounds very similar to mine, the conflict of info from professionals can be a nightmare I try to use the info that makes sense to me & ds2 & just dismiss the rest.

oh no worries, I'm grateful for the suggestions.

my ds4 has been diagnosed with hypermobile joints, which is fine, what is annoying me is the fact that they are using that to explain all his clumsiness, hypermobility runs in our family, we just used to call it double jointed and ds4 is the 1st that i know of to get an official diagnosis, but i was clumsy, my ds1 was clumsy, nothing was ever said, all they are diagnosing ds4 with is hypermobile joints and dd oh and flat feet, another inherited trait. i also believe ds4 is dyspraxia though, and they dont want to know, they are just blaming the hypermobility, fubsy what you said about that mixed with other conditions made a lot of sense to me. physio has been less than useless with ds4, havent really set any exercises, and has tried to discharge him several times, ot discharged him cos he built a tower of blocks.