Arun has motor skill delay - where do we go for treatment?

TJS
TJS Online Community Member Posts: 3 Listener
edited June 2014 in Families and carers
He's 15 months, after long time in hospital with pre/post birth problems, and can't stand up yet, and poor balance sitting up. Rather than leave it to chance that he will eventually progress to walk unaided, we want to give him more intensive help early.

I really want to know, from anyone's had similar experience,what therapies or centres have helped walking? (we're near Milton Keynes).

And if a 2/3 week course is better than occasional physio visits, is the ideal aprogramme of daily personalised skill exercises lasting indefinitely?

Comments

  • renacahill
    renacahill Online Community Member Posts: 145 Contributor
    Hi
    Was your toddler followed up via the paediatrician regarding difficult birth problems?. They should be noting the delays and you should have physiotherapy and occupational therapy input by now. Has your HV noted the problems and made sure you have adequate input? Your GP is able to refer you back to paediatrician if you have been discharged. It is vital you have regular weekly input and that you are able to do a full range of physiotherapy with your child under guidance of the physio. on a daily basis. Your little one needs regular input as intensive courses may be more effective at a later stage if needed, but it is the day to day building up of core strength and appropriate movements which is more important at his age. You should also look at weekly hydrotherapy it is a great therapy.
  • TJS
    TJS Online Community Member Posts: 3 Listener
    Thank you for that. The paediatrican did get physio and occupational involved. We don't have weekly visits through. There is a good month or more between visits. So we have exercises and we do them every day. But as I've heard others say, we're not sure we do them well enough, and the delay in monitoring progress isn't great. What can we do about that?
    we did have a short hydrotherapy course - that was good - but you get 5/6 sessions and that's it. So we thought why not get him into swimming classes and regular pool visits.
  • renacahill
    renacahill Online Community Member Posts: 145 Contributor
    Hello
    I think its time to get back to these departments and start nagging. My grandson gets fortnightly physio and OT (our request, weekly is too much and as nurses my daughter and I have a good grasp about what the physio needs from us) - Physio comes to our house as DGSs not keen on physio dept and responds better at home) He goes to the sensory room with the OT. Hhydrotherapy weekly since he was 7 months, (nearly 2 now). Portage weekly. This book http://www.amazon.co.uk/Teaching-Children-Cerebral-Movement-Disorders/dp/1890627720/ref=sr_1_2?s=books&ie=UTF8&qid=1280868158&sr=1-2 has been our bible and is currently
  • TJS
    TJS Online Community Member Posts: 3 Listener
    Hi - your support is definitely much better - fortnightly physio as compared our monthly/two monthly, and continuous hyrdro - where we had 6 weeks and goodbye.
    We do have a chair for sitting which seems good.

    Our pediatrician has done an about face - saying he will not give us the referral letter for a consultation, after he'd agreed it with my wife on the phone.

    I reckon that despite what we said he's still thinking this represents some tacit agreement for the PCT to fund something, and he wants to avoid it.

    The physios quote 'research' that more physio delivers no extra benefit but we know, one session monthly is in practice far from sufficient to guarantee that our daily routines are effectively administered, monitored and developed at the rate Tomas needs.

    So I will be looking to get support to fight for this. Hadn't thought about the MP.
    (we have the book BTW).
  • ScopeHelpline
    ScopeHelpline Online Community Member Posts: 204 Contributor
    Hello TJS

    You might want to contact Scope Response as we may be able to provide you with information and support on this issue.

    If you are looking for information about intensive therapy programmes we can suggest the following:

    There is a centre in Flitwick, Bedfordshire (not far from Milton Keynes) called the Cerebral Palsy Physiotherapy Centre who offer intensive therapy programmes, so you might want to have a look at their website to see what they offer - www.cppcltd.co.uk.

    You might also want to consider Bobath, www.bobath.org.uk.

    Please contact us on tel: 0808 800 3333 if we can be of any help.

    Kind regards

    Forums Moderator

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