where to get DD help for stiff movement and possible pain?

[Boboma]

My 4 year old DD's teacher mentioned that her movement was stiff and that when she had to sit for longer assemblies they had to get her a chair because she was too sore to sit. She has verbal dyspraxia plus cleft palate and hole in heart and the drs think that she has 'something' but no dx. She was late to walk (22 mths ish) and has low stamina still but seems to have good co-ordination. She also doesn't have hyper mobile joints or anything. When she was under the CDC they noticed her stiff movement, but a physio check just said that she was OK. One leg is longer than the other but they don't do anything about that. Now that it is school + CDC + me thinking that she might do with some help I'd like to find out if there is anything that I can do for her. Paed just mentioned referring her back to same physio that said she was OK. Is there anyone who would check this type of thing out privately and if so, how do you find them? I'm in NW England.
Thanks for reading. I know that this is fairly minor in the scheme of things.

has she had an orthopaedic review about the leg lenght discrepancy? or any orthotics (they quite often put a 'lift' insert into one shoe - or build up one shoe if she wears piedros or similar? they really do need to be looking at it properly - who was it that said they 'don't do anything'? leg length discrepancy does need checking out - it can lead to unusual gait patterns which put more stress on different areas of the body, and potentially scoliosis of the spine etc - and it's pretty important to keep it monitored over time - they grow so fast at this age.

physio would definitely be the right place to start, but you would probably be within your rights to ask for a different therapist assessment if possible.

you could look for a private physio assessment, but tbh i would be pushing your paediatrician for a proper multiu-disciplinary review. including orthopaedic referral. ot might also be able to provide some supportive seating for school which might help alleviate pain etc.

why was she discharged from the cdc? i think it's time to go back... do you have a different paed now?

My 13 yr old has suffered with severe discomfort since 2008, he is deafblind,cp etc.
For the last 6 months life has been horrendous for him and us, screaming moaning and totally disconnected with life. Finally dx'ed with neuropathic pain, has been taking Amitriptyline for 6 weeks the jury is out at present! Please if you think your dd is in pain please jump and down until someone listens. I wish I had.BTW all tests came back negative, it was on a 5 day placement on pain observation before anyone took it seriously. If appropriate stick to your guns. Good luck.

outof it was the CDC physio who said that they don't do anything about leg length discrepancies. No-one has mentioned orthopaedics department to us. Her legs are obviously different - you can see when she stands up for her height to be measured that one leg is quite bent when the other is straight. We were discharged from the CDC when DD started school. I thought that this was the norm and that they were only for pre-school?? Why is the NHS so confusing? The paed that we used to see was a health one rather than a developmental one. He was mainly concerned with making sure that pneumonia didn't keep recurring. He's now retired but on our last visit said that we'd have something like a multi-discipline review going forward. However, we just seem to have been assigned a new general paed though and she looked a bit overwhelmed by DDs huge notes and we won't see her for another 6 months. I'll see what her summary letter says when it comes through and then ask further about ortho and physio (I think that they only have one though so it will be the same lady arrgh!). Maybe OT can help too. Must admit that I don't know much about OT.
2old2be sorry to hear that you DC has been going through a hard time. Thanks for the encouragement to stick to my guns. My DD isn't in constant pain fortunately (that must be horrible) but it was the teacher talking about pain that made me think that I need to do more about this.
Thanks for the help

the cdc thing varies from area to area tbh, so don't be alarmed. where did you get the impression the multi-disciplinary assessment was going to be? some areas do have specialist centres (thinking of hepac in oxford) but mostly they are done out of cdc's where we've been....

i would be tempted to call your paed's secretary and just say that you were told by (old paed) that there would be a proper multi disciplinary assessment and could she get (new paed) to make sure that the referral had been made so that you are on the waiting list....

six monthly checks are the norm for most developmental paeds, (going down to 12 monthly when stable) so that seems fine. but i would def push for a proper assessment, and if you need to, mention the pain to to the sec (a bit of weeping can help, too... )

we mostly use our paeds for referrals tbh. by and of themselves they can be fairly useless, but are usually good at keeping an overall picture. they can take months to send out reports though.

Given her early history, I am surprised your DD is discharged from services..Does she need continuing SALT with her verbal dyspraxia?
I second that her leg length discrepancy is something that needs to be monitored ideally by a specialist paeds Physio together with an Orthotist.
And Paed review 6 monthly would be standard unless there were pressing medical issues- it's the role as gatekeeper to the other services that you need at the moment.
Were you aware of the pain issue when you saw the new Paedx? If not could you arrange another ''urgent'' appointment to investigate. Pretty much what outofbody said