does anyone else have any ideas they can suggest for this?

[Harleyisme]

I have a son hes 6 years old he has autism and has signs of hypermobility. He has seen a neuro-development paediatrician for his autism diagnosis she said she didn't deal with physical things. Hes seen a orthopaedic consultant who did blood test for vitamin deficiencies, kidney and liver function tests, calcium test, creatine kinase. He also saw a community paediatrician for his heart as he was having palpitations and complain his heart hurt and would get breathless. Now they say that the heart issues are due to anxiety. while we were seeing the community paediatrician he was surprised with his reflexes in his knees am not sure why as he never said but ds would shout as if he was really hurting him. The Paediatrician went and spoke to a consultant who said it was all because he has autism he feels things more but the paediatrician said if he continues to complain take him to your gp and get him back to the orthopaedic consultant. We are doing this but earliest appointment we could get was the end of February. Does anyone have any suggestions on what this all could be?
His symtoms:
Complains he hurts in the legs, back, feet, neck, hands when doing something with them.
He drags his left foot along the floor sometimes when walkig.
Left leg is always facing out ward.
He doesn't have the strength to pedal a bike.
He sleeps alot he can have a solid 12 hour nights sleep but gets tired after only being up a couple of hours.
He has very bad anxiety.
He struggles to manage school and is barely managing a hour and half at the moment.
he has continence issues both wet and soiling.
he gets ill all the time every little thing that goes around he gets he also always gets it worse than everyone else.
he has at least 1 chest infection a year sometimes more.
he gets rashes really easy.
his skin is really sensitive and he scars very easily.
I know some could be his autism but i put it all to see if it could also be something else.

Bump

Your orthopaedic consultant is shit then!

Because everything you mention that’s physical points to Eds (ehler Danlos syndrome)

Which my dd also has. But took us until she was nearly 12 to get a referral to orthopaedics.

But our consultant spotted it straight away. The tests merely confirmed.

Eds causes ALL the muscular tissue in the body to be too stretchy too soft.

The heart is a muscle and “over” stretches when filled with blood in people with Eds causing palpitations

Nerve response is heightened - they hurt more

The body overall has to work harder to control ALL movements even breathing so they get more tired (try to think of it as they’re doing low level exercise CONSTANTLY)

Chronic pain throughout the body but especially joints.

Continence issues - their muscles there just don’t work as well as others, when they gotta go they HAVE to go!

Gets ill all the time - they are particularly prone to mucous membrane infections. Catching them in the first place and get them MUCH worse than others. My dd was hospitalised a few years ago because of a very common infection most people don’t even visit their dr for. In her because she has Eds it resulted in her losing a LOT of weight fast (and she’s already painfully slim because of it! They have a higher metabolism too, plus they’re using more energy with the work their body is doing to maintain muscular control) becoming dehydrated and acquiring a separate bacterial infection on top. She was in over a week on drips and wasn’t allowed back to school straight away once home (and she wouldn’t have been up to it, she could barely eat and walk to loo). Don't want to say exactly what here but happy to pm.

They have soft “velvety” skin that injures VERY easily and is very sensitive. The skin splits and bruises at the slightest touch. At one point I worried about leukaemia because she had a load of bruises with no explanation how she got them.

Please do look at Eds info elsewhere but that’s what your post shouted to me.

The orthopedic consultant said that the blood test was normal sonhe can't have eds. I do think its eds but no one will take me seriously the last time we saw the community pediatrician he put in the letter i had more and more complaints but he can't find anything wrong.

Immediately when I read your post I thought Ehlers Danlos too.

And often elements of ehlers danlos are mistaken for asd symptoms. Hypersensitivity to textiles, sounds, smells etc. Discomfort in the environment. Visual strain. Actually these symptoms make sense if you understand about nerve responses and skin sensitivities and so on.

It all does add up. Its like when he showers no matter what he uses he comes out super itchy and red which clears by morning. The same thing happens when hes stressed or been out in the cold. When he wets he gets sore very easily he always has done.

I'd bet good money his results were "borderline" and nhs parameters for this stuff are far too narrow.

I know it's hard but try to get to see a different orthopaedist and bone up on eds and do what you can to mitigate the issues

I will do. To be honest i will push push push hes hurting alot just lately and is very very tired.

Can eds cause you to be sick alot. Ds is octen randomly vomits in the night or feels like he needs to vomit. He never appears to be ill as such though we have often thought it is his anxiety but wondered if that could be related to all this.

It would probably be counterproductive to speculate too much.
People with eds tend to be more susceptible to mucous membrane issues, so picking up coughs/ colds/ sore throats etc, can sometimes lead to inner ear infections that can in turn cause night time nausea. But being physically sick seems quite extreme.

Dd is prone to nausea/vomiting as op says not directly but because she's prone to ear & eye (eyelid) infections which make her dizzy etc