To ask people to help me figure this out.

[Harleyisme]

My ds is 5 he has autism. He has since he was 2 struggled with his major motor skills.
He was refered to podiaty at the age of 4 who said his gait and walking wasn't right who refered him to physio who said that he needed physio but couldn't understand what was asked of him and couldn't do it he saw 3 different physios first wasnt sure second wasnt happy and didn't know what to do thrid decided it was fine. Hes had hip xrays that where fine. Hes seen a childrens bone doctor under the 2 week rule who did a 5 minute exam and 1 lot of blood test all that came of that was him saying ds possibly hyper mobile. Hes seen a pediatrician for his heart as he has episodes he complians his heart goes to fast sometimes during physical activity sometimes when hes not physical at all each time hes very pale and cluthes his cheast. Hes had a ecg that came back ok but heart to fast. Now when i see people i seem to be getting told its his autism he feels things more than othera but this doesnt feel right.

His symptoms are
Hip pain
Limping after walk a while.
Dragging his left leg after walking a while.
Doesnt put his left foot fully to ground when walking.
His feet look twisted when walking.
Complains his right ankle hurts then says his foot is stinging.
Has the heart episodes.
Tells us that he has to check is blood things in his arms as the stop blood asked him what he ment he said his body feels weird.
He has a bloated tummy that you can see his veins on.
Hes struggling with bladder and bowel control.
He will often say things like will my hips always hurt.
If we go out for the day hes exhausted for a few days and its takes him days to recover.
The day after lots of walking he really struggles with pain and is very emotional.

I just feel like i am being viewed as a neurotic mum now but i dont feel comfortable with how he can be.

I have EDS and a lot of the symptoms you listed are familiar. EDS and autism are also co-morbid (this is true for me).

It causes me so much pain, I am actually livid that someone said it doesn't. I wasn't diagnosed until mid-teens because doctors said it was growing pains/hypochondria ... Many conditions commonly occur with EDS - including circulation issues. I have POTS (postural orthostatic tachycardia syndrome), too, for example, which means I need more salt than most.

Not saying this definitely is what he has, but the diagnosis of hypermobility can be a useful starting point in investigating his issues.

@RockinHippy i will look into b12. Hia vitamin d is fine and closely whatched as he has photosensitivity (sun allergy) so can't spend time outside without high uva star sun cream and being covered up.

@Smallbow i will keep pushing for them to keep investigating possibilities. I have looked at eds alot and it does tend to cover alot of his symptoms.

Can I just say that this:

They did tell me that they didn't think that hypermobility is an issue as they say you dont get pain with it

is utter bullshit. I have hypermobility and pain is very much a part of it. In addition to the increased risk of strains, sprains and dislocations there's often a more general ache in the joints. It's also not uncommon to get digestive issues with hypermobility and, as others have said, ehlers danlos is a real possibility too.

I also suffer from fatigue cycles which is a common side effect of hypermobility so his exhaustion could be caused by that.

@TrickOrRuddyTreat i do get the inpression that they say things like that to fob me off.

Oh I don't doubt that, there's a distinct lack of understanding about hypermobility and the effect it has on people. Like lots of chronic conditions not all sufferers have the same issues and different treatments work for different people. If you can get a diagnosis then there's lots of information online, but obviously for your own peace of mind you want to be sure you know what you're dealing with.

Good luck and drop me a message if you want, happy to tell you what's helped me etc if you think that would be useful.

I spoke to the pediatrician today and she said we need to speak to his his other pediatrcian as she only deals with autism and now he has his diagnosis hes been discharged.
Yes did say they had done a hip xray which was fine and that they don't like to over investigate. She said that the other pediatrician saying its his autism is what he means is some children like my ds worry and get stomach and headache and thats what he means but this isn't the type of pains my ds complains about. She also said when he had his ecg that the person who said that his heart beats to fast is only a technician and that shes won't know that children's hearts beat faster than adults anyway. I thought that sounded a little not nice as i am no sort of professional and i know childrens hearts beat faster than adults.