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.

Has anyone looked further into the possibility of hypermobility? It can have a whole range of symptoms and complications

Nothing helpful to add beyond wanting to tell you that you definitely aren’t being neurotic.

@Bambamber no they refuse to they tell me hes to young for them to even think about hypermobility.
They evwn tried to say ot was just him but he never gives up no matter what he tries so hard at everything he does and when he starts gurting he will chant things to himself like i have got this, you can do this and keep going.

Thankyou @BogglesGoggles

My godson was diagnosed with hyper mobility at a few months old so I don’t see how he’d be too young to investigate it!
Have you looked at dyspraxia?

Hi there, I would certainly challenge the too young for hypermobilty assessment as both my sons were diagnosed at 9 months and 15 months respectively. Swimming and physio have helped them both especially to strengthen their joints.

I will challenge the hypermobility.
They did tell me that they didn't think that hypermobility is an issue as they say you dont get pain with it.
I hate the fact the health care is such a postcode lottery. Its took me 3 years to get them to refer him to a ot which school ended up doing but hes on a 20 week waiting list.

Also yes i have looked at dyspraxia its also a possibility.

You are NOT a neurotic mum. You are concerned. And he has lots of issues that may or may not be related. DS also has autism and also had a heap of maybe related issues, including dragging his foot (common in autism) and weak heart. It's a battle to get medics to look at this sort of thing holistically. We just ticked off one then another.

I'd be inclined to look at his stomach first as so many issues come from gut problems and autism is closely connected to gastric problems. Does he have reflux? It's very common with autism. If he does, it could be causing all sorts of problems with vitamin uptake. If he's low on iron of Vit D that could explain aching limbs, weakness and exhaustion. But then a weak heart can also lead to exhaustion.

For DS, we just dragged him to the play park twice a day at weekends and every day after school to encourage him to spend time climbing and stretching to build up his strength. It happened gradually but he never overcame that dragging foot. Now he's a teen it's not noticeable.

I'm sorry for you. It's stressful to have to keep going back again and again for extra diagnoses and tests. But don't waste energy caring if they think you're neurotic or demanding. And always challenge them politely if they try to make you feel you are. I used to list all his issues for them using the correct medical terms which made them pay attention. It should get easier, with luck. They do get stronger as they grow older. And definitely if he has gastric problems, curing those can help hugely in increaing energy and strength levels.

Hi, I was told pain was one of the main symptoms . My sons were also tested for Elhers Danlos syndrome which is associated with hypermobilty. It really is a postcode lottery and a real fight sometimes. Don't let them fob you off.

OP I have some great material on dyspraxia. Loads of fun exercises to do (they really are fun). If you think it's that PM me and I'll send you a link to download the material.

Thank you.
@Growlingbear am not sure what i think it is theres ao much over lap with his symptoms and many posbbilites. I am wondering on gut problems as we are so struggling he poos up to 8 times a day. We have do a decompaction to make sure its not constipation and over flow but thats not do any good. Hes under bowel and bladder team now we had to wait 2 years till he was 5 for that one.

Thanks for the convermation on the pain @lou0390 i am finding each doctor has there own opnion pf possible symptoms.

Sorry for my rubbish typing ita ment to read we have done a decopaction which hasn't made any difference.

I know someone who has a genetic predisposition to hyper mobility. The gene also caused some kind of rheumatoid arthritis (which is obviously very painful) in her. I can’t remember what it was called unfortunately.

Just remembered - Ehlers Dalnos

www.nhs.uk/conditions/ehlers-danlos-syndromes/

Reading over the website it covers his other symptoms too.

Don't give in. My ds has asd and at about 4/5 he started struggling with motor skills (he walked etc early but developed stair walking 1 at a time late).

Over the years there was a definite decline and it was always "its autism". It's sensory blah blah blah.

He also has odd neurological episodes.

When his arms started to contract years ago they tested his neuro functions and he also began to toe walk after a while due to extreme tightness in legs. He also develop hyperreflexia. Diagnosed with hypertonic muscles despite a physio saying he was hyper mobile at a young age.

Finally at 14 genetic tests for a particular condition show he has a variant on a gene that is a protein coding gene relating to neuron functioning. It needs investigating as it a different variant to that usually seen with the condition.

Now they think the asd is more likely behaviours he has because he has a genetic condition rather than him having 2 conditions iyswim? Obviously he has asd as it's just a set of behaviour criteria which he exhibits.

Have you seen a neurologist?

I also immediately thought it sounds like hyper mobility. The 'body feels weird' might just be ASD sensory processing, and the bowel/bladder control is something which seems to generally come late with ASD (my 5yo also wets/soils himself daily due to lack of awareness or being engrossed in something else).
Would definitely push the hypermobility diagnosis.

Thank @BogglesGoggles i will have a look.

@youarenotkiddingme no we have never seen a neurologist i wont give up and i will keep pushing. Its very interesting and i think they are to quick to say its autism when they havent really investagated other possibilities.

@SansaClegane i will keep on with the hypermobility as it does sound like it could be a possibility.

One of the things i missed in my first poat was how his back looks curved when hes stood up and how one shoulders higher than the other.

I don’t have any experience of ED, but as far as joint hyper mobility goes ignore anyone who says he’s too young or that it doesn’t cause pain. Even for those who don’t suffer direct pain or discomfort, or regularly dislocate joints, it’s so easy to strain or hurt yourself.

Most hcps are pretty clueless when it comes to hyper mobility, they seem to think all young children are bendy and even if they do have it they’ll just have an advantage for gymnastics and dance.

Push for a referral to a podiatrist for orthotics, it could just be coincidence but ime they are generally more aware of the issues and then use their opinion to back up the need for investigation. Even if it’s something else your ds has hyper mobility can’t be ruled out by hcps that are clearly clueless.

Also, if you haven’t already, in the meantime try different footwear. Solid soled supportive shoes are generally recommended, but we find the weight makes it more likely to go over and prefer lace up medium weight ankle boots. It won’t cure anything but it might ease walking a bit.

Yes - ds back also looks curved with one shoulder higher than the other. Be reassured though that his isn't a scoliosis (has mri of spine) but it is caused by the weak core and uneven muscle tone. It's far worse at the end of the day.

A friends son had Legg-Calve-Perthes Disease which started with pain in hips and legs. Wondering if the leg pain and dragging is related to this?
I think it's to do with blood flow to the hips and he grew out of it but had to rest his hips at school for a couple of years so intermittently used a wheelchair.
Don't think it can be linked to stomach issues though.
Hope you get it sorted.

We have an appoinment with his pediatrcian tomorrow i am going to write a whole list of his symtoms and take it with me and push to get more investigations.

Hi Op,

My DD has hEDS & Functional B12 deficiency. Her symptoms worsened after antibiotic treatment for chest infections & pneumonia & dental work needing Nitrous Oxide, all of which affect B12 the body & left a Functional deficiency much worse. Pain medications for her symptoms then made this even worse still. She also developed much worsened ASD traits, though she may also have ASD & there is a 7 fold higher chance that she does due to her hyper mobile ehlers danlos. BUT there was nothing obvious until much later when the B12 deficiencies took over & made her very, very ill. There is a link between this deficiency & EDS too.

The symptoms you describe remind me a lot of what my DD went through & put her in a wheelchair for a few years. B12 injections turned that all around within 2 weeks. Even though the doctors insisted she had CRPS, we knew this was wrong & pushed for a therapeutic trial of B12 injections. It was a fight, but it turned her life around within weeks & we haven't looked back.

Doctors too often don't know enough about this deficiency, nor read the guidelines properly, or understand that kids need more B12 than adults to grow. So you might have a fight on your hands, but your doctor cant legally refuse to trial the treatment as it's a diagnostic tool.

Info in the link, but this is what I'd push for first & then look into founding a local EDS aware paediatric rheumatologist

www.b12deficiency.info/children-and-b12/

Oh & my DD had pretty much back to back significant hyper extension injuries for years. She hasn't injured herself bar very minor injuries since starting on monthly B12 injections

I'd also suggest that he's tested fir vitamin D deficiency too, some symptoms could be that. It's a common deficiency as we don't get enough sunlight in the northern hemisphere. My DD had both, as did I & natural D3 supplements have helped a lot. Prescription stuff, not so much so