To ask for peoples thoughts.

[Harleyisme]

I have a ds who has autism. He is 6. He jas always struggled with pain. He has been seen by the pediatric orthopedic consultant, pediatrician, piodiotrist and physio. He also complains alot of his heart racing. He has had a ecg and bloods for heart issues and to check if anythings going on they couldn't find anything and because ds doesn't react how they think he should as he doesn't like being touched and he struggled to communicate what he feels they decided the heart was anxiety and the pain isn't actaully pain at all. He did have physio but because he didn't understand the exercises they asked him to do they discharged him.
Now this sits uneasy with us as when hes crying woth pain he proper sobs and won't carry on. He struggles to have the strength to pedal a bike hes leads still with one foot up and down the stairs be stands all odd. He doesn't sit he stands or lies down and complains often that sitting hurts. When he runs his left leg will often swing out and he doesnt bend his knees much. He appears at times to be very stiff. Biggest problem is that his symptoms appear to be intermittent and he can have 'good days' where he appears mostly as everyone else does. We are at the stage now where we really struggle to get anyone to take us seriously on these issues as its just him. Are we being silly and over the top or does it sound like there is something going on with ds?

Look into hypermobile spectrum disorder / hypermobile Ehlers Danlos syndrome: the racing heart could well be PoTS. The fatigue and weakness fits, there's also a growing realisation that there's more ASD sufferers with EDS than the general population. Was hypermobility mentioned by the physio?

I will look into them thank you.
Physio did say hypermobility could be a possibility. The pediatric orthopedic consultant said hes very bendy but the pediatrician says hes far to young to even consider hypermobility or anything else.

the experts sometimes need a gentle reminder that because the text book says something it doesn't always make it so in rl.
keep pushing it op it's a struggle but hang in there, your poor ds.

Sounds a lot like our DS (7). We've obtained a referral for a DCD (dyspraxia) assessment which I'm hoping will lead to some occupational therapy and physiotherapy, but I think a lot of it is down to weak core muscles, something which seems to be common in autistic children. He gets more 'floppy' the more anxious and/or sensorily overloaded he is.

I was going to say the same as chronically
I'm autistic and have Hypermobile Ehlers Danlos Syndrome.
I'm in pretty much constant pain.

The pain your DS is experiencing seems like more than that though. Could it be cerebral palsy, even?

My DS with ASD is hypermobile and this was observed at 3 so I’m not sure why they say he’s too young.

My DS isn’t too badly affected but I’m hypermobile and as a child suffered very badly with ‘growing pains’ (which is how they were dismissed) but it improved with age.

That's awful for you, HerRoyal. How do you manage it (the pain)?

My first thought was also JHS/EDS.

It can be really difficult to get a diagnosis for children. It is often passed off as children being naturally flexible/growing pains/not really in pain.

It is certainly an option worth exploring, although of course it may not be that at all

I was going to suggest Ehlers Danlos syndrome. I’m hyper mobile in nearly every joint, I have good days and bad days and it can be horrifically painful.

Fibromyalgia possibly?

Was going to suggest hyper mobility also

MoMandaS

Dihidrocodeine and diclofenac.
And physio with a lovely woman who has actually researched EDS.

Look into hypersensitivity, especially around interroception, proprioception and tactile function.

In my ignorance I want to suggest lots of regular physical activity that he enjoys to build his reserves & muscles. As much walking, swimming & playing as he finds fun. More stamina & endurance than aerobics since he doesn't like high intensity.

I was thinking sensory processing disorder. Can you get a referral to an occupational therapist who understands autistic children well? I know it sounds horrible, but have you thought about filming him on bad days for evidence as sometimes it is hard to get across how it really can be in a 10min gp appointment

Thank you all.
I have asked several times for a OT referral the Pediatrician asked the school to do it the school wouldn't as why should they do the work 🙄.
I thought either sensory or maybe hypermobility/ eds.
Thing is they have seen him on bad days for them selves but as he presents oddly and can't explain why hes walking who where exactly it is thats hurting he gets dismissed.

I have a couple of questions. Can these conditions be worse in winter as thats when he seems to struggle the most. Also he has toileting issues now one accident can make his skin really sore even with being changed straight away he also has photosensativity which is allergy to the son could this be part of the issues too?

I definitely feel worse in winter. It's like the cold affects my joints.

There can be a lot of issues with EDS, gastric issues are a common one. The problem with it is that everyone has a different presentation and set of symptoms, just like ASD.