So scared and getting fed up of going round in circles.

[Aspieparent]

I have been debating wether to post this thread or not for a few days but I figured if anyone would understand it would be people here.

I have a ds who's 4. He's had alot of issues over the years from late talking, social issues, tracking behind at nursery and struggled to potty train. He's currently on a 18 months to 2 years waiting list to go to panel for a autism diagnosis.
The last 12 months we have noticed how much he struggles physically. He's never managed to climb the stairs he's always crawled up them. His legs point outwards has an usual gait when walking and we have been told his muscle tone is on the lower end of normal. He doesn't climb he's runs very little and even when walking he has to stop to rest. He complains it hurts alot too. He gets tired very quickly and is very tired after 3 hours at nursery that he won't do hardly anything for rest of day. He sleeps well though at times he can sleep up to a 16 hour night. When was refered to A podiatrist who referred him onto the physio who gave him exercise that he couldn't do. During the 3rd appoinment with physio we were told he has hypermobility that we had to make him carry on not let him rest, we had to make him climb the stairs proepely not crawl that he couldn't possibly be in pain and that of he doesn't do more his muscle were going to get weaker and they aren't great to begin with. We did try this but he seemed to be getting worse he was starting to walking on his top toes on his left leg after a few minutes walking and swinging his leg out to the side. He was complaining of more pain. He also started to struggle more with activity he could only manage a couple of minutes on the trampoline before getting of saying he needed to rest where he used to spend a good half hour on it and he no longer can climb out of his grandads car he has to be lifted so I took him back to the gp who examined him everytime she moved or touched his left leg he was wincing and nearly jumping of the bed. She did an emergency 2 week referal to the paediatric hot clinic and they contacted to say that they don't think it's urgent urgent just urgent and have refered him to the orthopaedic consultants. I haven't a clue what to think I have alsorts running though my mind. We are currently waiting for the letter to book the appoinment for the orthopaedic consultants. My dh has convinced himself that it's cerebral palsy but I am really not sure.

I think hypermobility and low muscle tone is very common in autistic children so it could be that rather than CP. My DD showed physical issues before anything else. Definitely seems worth investigating. Do you know how long the wait might be?

Don't know how long we have to wait we just got told a booking appoinment letter was in the post.
The physio told us that he couldn't be in pain with hypermobility so I don't understand that bit. He doesn't complain of pain as such just jumps and whinces when you change his nappy of you aren't careful or if you press his left leg. Am not sure if I should be pushing him to do more or not he does try but you can clearly see how difficult he is finding it and how much effort it is for him. He also has really bad eyes sight which is another reason they are saying he has physical issues but his eyes are getting better with glasses and patching but his physical symptoms are getting worse.

Is he still displaying signs of pain?
If so, get back to the GP. It's not reasonable to expect a child to be in pain whilst waiting for an appointment.

The physio told us that he couldn't be in pain with hypermobility
Hypermobile joints don't hurt when they are over-extended, i.e. the person does not feel pain when they are 'bent too far the wrong way' in the very short term anyway.
But the pain you describe isn't that in my non-medical opinion.

I'd just ask for my child's pain to be investigated again, some hypermobile folks dislocate their joints very easily, often called sub-lux.

It's not normal for a child to startle and wince in pain at a nappy-change. It's not normal for a hypermobile child to do that either. Qualifier, I have experience of one.

OOH possibly, take him and let them know how long he's been in pain and ask why they think it's okay to leave him in pain until whenever this referral comes through.

Read up on hypermobile joints and joint hypermobility syndrome.
Kids do get very tired and once their energy for the day is gone, (read up on spoons theory) find all movement a struggle after that. If they are pushed beyond their limit, then of course it's painful.
Some conditions respond to graduated exercise, some do not.

Thank you for that.
He is still on pain he's never seems not to be in pain. I no longer lie him down for nappy change a do it stood up so I don't have to move or lift it up.
It is clear he does have hypermobility I don't however feel this is the reason for all this it doesn't fit iykwim.
I have spoken to the doctor twice since the referal and been told I just need to wait for the appoinment. We have also been in A and E who have examined him and told us to wait for the referral. We were told last Wednesday it's in the post and should be with us soon but it's only a booking letter I just hope we don't phone to say it's going to be a few months down the line. We had to wait 16 weeks for padiotry the a further 4 weeks for physio who so him 3 times up until January and we have been back to the gp several times on all of this.

Have you tried contacting PALS at your hospital. They can often get appointments sorted out much faster than mere patients. A well-worded complaint via PALS is very effective at our local hospital.

I will look into doing that got the appoinment though today for 17th July can't believe how long away it is.