If your DC has CP or another "movement disorder", what / who has helped you the most?

[mm22bys]

Hi,

I might be cheating a bit here, but I am still struggling to feel like I am helping DS2 as much as I can.

I am trying to research on-line about different therapies (Bobath, Peto, etc), and institutes (BIBIC, Brainwave, IAHP), but I am after some guidance on what / who has helped your child the most.

Is it physio?

Is it Portage?

Is it BIBIC / Peto / Brainwave?

Is it a "caseworker" or some sort of mentor (eg dr or hv) who has helped you and your DC get the help he/she needs?

I am not necessarily after a "miracle cure", just some guidance as to what sort of resources / people are out there who might be able to make a small difference.

Thx

well for us it has been phiso, but we did find tha although she and i hated it conductive education did help.

We've found physio helpful too, although maybe that's because we've been working on it regularly. Still trying to access Portage but will ph them next week.

What is conductive ed, how did you find about it, who funded it, and how young can you start?

Thx for your responses,

Conductive Education, Hydro and Portage were all really good.
Con Ed for the ideas.
Hydro for the way it eased his muscles and made him more flexible.
Portage for the Moral Support. ... but ... The Portage worker I had did go on to tell any one that would listen that she got DS walking, yeah, while I sat and fiddled with my thumbs!

The first year I'd say Physio had the most effect but since the best biggest input & most effective support has been OT DS2 has made such huge improvements thanks to OT.
I never had Portage but friends whose dc's have used them rate it above all else.

Conductive Education - fantastic

Osteopathy - started standing independently after 1st visit (was standing for a couple of seconds previously) and it makes an instant difference every time we go

Homeopathy - what an amazing difference!!! My DS is unrecognisable since starting this!!

My dd has made progress in the 3 weeks we've been doing Conductive Education than in the previous 6 months of pants of NHS physio.

She is also having weekly Bowen Technique sessions, it has transformed her little thumb from being permanently tucked in to an incredible open palm and a right hand which is now being used all of the time.

I think to a degree many different things 'work' - the main thing is finding something that you can afford, where you like whoever is doing it and where you believe as all of this takes so much time and commitment.

To be honest one kid will fly with their OT, for another it will be Portage/Physio/Con Ed. Every child is different, as is every childs disability.

I completely agree Floopowder

Who told you about these different things like conductive education, hydro. How do you access them? Are they all through the NSH?

So far we have had some success with our BIBIC program (combination of sensory stimulation, physio and OT), but I am still learning what is out there, and who you have to push to get your DC to the top of the list...

Jenky - can you describe the Bowen technique for the hand? dd has no hand function or awareness but no-one does anything about it. I can't afford any alternative stuff but if you can descrive things, I'll do it.

I can't really tell which works best for us yet, we've had portage, stopped now as he got too good! Physio OT and SALT all great. However we also do consductive education through small steps school for parents. If you google conductive ed you will find lots of centres, we go to one in SW london. This one is free, or rather we fundraise or give donations but don't pay per session. Be warned that some physio's don't like it as it someimes contraindicates what they are trying to do. WE have never found that but then the one we go to is not 'pure' conductive ed.
In spite of all that, plus the stuff I do at home, I am just about to take DS1 to a place called 'footsteps' in oxford for some intensive therpay as I feel he really needs that atm and we are not getting it through NHS. We, or rather my parents, are paying for it, we are also on the wiating list for Brainwave.
I think it's a case of researching all you can, trying as much as you can and them taking up what suits you, your child and your family.

DS Physio also does Hydro, she said he could go, (a bit weird to me as he was also still on O2 at that point). We live in a deprived area ... aparently! and the mother and toddler group we went to had an ex portage worker running it. DS O2 nurse had told me about portage and we had applied, and as we were living in that area they asked her to portage for us. And the portage lady asked me to name one thing that she could do for me ... and I asked her to help me find a con ed centre. Which as her sister ran one about 15 miles away (unbeknown to me) was simple. It cost me a 'nice' donation every week.
For my DD the best help we got was from Young Carers, they took her out and about which was good.
Riding for the disabled is also brill, and your school should let you have time out every week to go as well.

Actually in retrospect, having other parents to chat to, parents that have gone before you and know about things you don't and who/how to ask is invaluble.

Needmorecoffee - Bowen is a therapy and not something you can really do yourself. It's hard to describe but at the simplest form it resets your muscles to how they should be - generally only takes 3 or 4 sessions to sort out a problem but of course with issues like CP, the therapist resets the muscles but the brain is still telling the muscle to do the wrong thing (ie, why the hand is fisted) - after the first session dd's hand was open for a few hours but now after repeated sessions it is open nearly all of the time and her hand function is excellent. The therapist describes it as rerouting the wiring to her brain, finding an alternative pathway. Our therapist charges £25 for an hour but as we only have half hour sessions we pay £10 and go every couple of weeks. I understand though that everything costs money and you can only afford what you can afford. It annoys me that disabled families are having to pay for the short fall in NHS treatment.

Jenkey could you ask your therapist next time you see her if there is a age/time limit to when you should start. (I had originaly put pherapist and wondered why it looked wrong, but then spelling is not great)

Yes i will ask. I know it works for things like back problems on any age of course. But with CP it's kind of relying on the plasticity of the brain so I can see that it might be easier when a child is younger. Even if you couldn't get the more long term effects a treatment would certainly afford some respite from tight muscles and generally after a treatment children sleep soundly and comfortably.

I know this is old but has anyone tried cranial osteopathy?

yeah, did bugger all. I wasn't expecting leaping from wheelchair but still. And her seizures started during the treatment!

Ta for the heads up, maybe not for us then.