Please are with me as I want to give full picture. I had a thread on here a few months back about DS legs and toe walking but on app so can't AS and link. Anyone who can feel free as may help!
Ds met his gross motor milestones on time - in fact what's considered the early part of expected.
He walked fine but he continued with the 'arms up for balance' bit longer than expected and couldn't/didn't walk up stairs one at a time until about 7! He tripped up kerbs frequently and was very obviously in coordinated! He also favoured right hand as found gripping with left difficult.
When he started school his social issues became more obvious. Ds was very much is his own world and mind but was happy. I'd already suspected dyspraxia as it's the neuro developmental disorder that fits physical and social most effectively.
I mentioned this to his pead at an appointment when he was 6 - it came about because of his chronic constipation with no cause found and I said I'd often wondered about dyspraxia and would make sense if low muscle tone.
Ds social issues and MH declined and at 8 was referred to Camhs and out on asd pathway. At this point I knew this was the right path because although physically ds was way behind his peers with regards balance and co ordination his major issue was social and emotional.
He was diagnosed with asd at 10. Fairly simple assessment and dx as textbook case of what's described as HFA.
Ds had has some spld especially around writing and literacy (spelling and inference). Some can be put down to asd (language etc) and some has no explanation - and interventions have not resulted in much (well hardly any!) progress.
During this time ds was getting more pain in his feet and bottom of legs when walking. He saw podiatry who provided insoles for flat feet. He had an extremely pronounced pronation and required an 8° correction. They also said the pain was posterior tibial tendonitis. I mentioned his posture (bottom sticks out) and they said he lifted heels off the floor too soon when walking. Given stretches for Achilles. For years we did this until I finally said I was not accepting "do physio and wear orthotics" as a solution when it improved nothing and he was actually getting tighter as he grew.
We were referred to physio.
Also during this time ds started telling me about spots on wall, room tilting etc he was experiencing. It was around the time his language improved so no way of knowing if it was a new thing or he could just communicate it. I'd noticed ds had "absences" since a baby but no one was concerned. (You'll notice here a pattern of people not taking things seriously).
Saw a pead neurologist who did MRI and eeg but were clear.
Eeg was done because he was having nocturnal episodes - look like seizure activity but are now described as "nocturnal myoclonus type episodes". They can be anything from a few spasms to happing for up to an hour.
Back to physio! Assessed ds and asked if he'd ever had an MRI. Yes and clear - said no more but have exercises.
A year later ds was really unable to keep up with his peers and I asked for him to be seen again. Really tight hamstrings - put down to growth spurt. I argued this and said it wasn't a new thing related to the fact he'd grown over the year - rather it had got worse as he'd grown quickly. Physio basically dismissed me but gave him a night splint.
Ds happened to see his neurologist same day as his "episodes" had changed and he's had a few over the year where he'd lost consciousness and had brief myoclonus. I mentioned we'd seen physio morning and doing rounds purely conversationally as we'd returned from holiday day before. Kinda of "back down to earth today" type comment.
Neuro asked and I said tightness in Achilles and hamstrings and neurologist mentioned ds arms (which are permanently slightly bent!). He also tested his reflexes and he's mildly hyper reflexive. He's said his arms have early contractures (they've been like this over 2 years!) and with tests not showing something he'd refer to tertiary neurology.
We have an appointment with a neurologist with sub specialism in neuromuscular diseases and cerebral palsy in a few weeks.
Just so happened after seeing podiatry again in meantime he was referred to orthotic, podiatry and physio multi assessment. They have asked GP to prescribe baclofen and asked for referral to a specific orthopaedic surgeon for surgical assessment as ds literally cannot be stretched beyond what he has and is continuing to grow.
I looked up the orthopaedic dr and she specialises in neuromuscular disorders and cerebral palsy.
So this is where we are at. DS is 13. Constantly in pain and in more pain if he walks more than 1-2km. Arms don't straighten, can't sit at 90 with legs out in front and facing surgery - yet no one seems to know why.
Although I'm pretty sure they aren't putting it down to no dad in picture, only child, summer born boy! ASD anymore.
Anyone got any ideas or experiences of this and what surgery will entail - or positive stories about surgery?
Thanks for reading war and peace 
