support/information sharing thread for parents of children with Cerebral Palsy

[inhibernation]

Hi, was wondering whether you might find this useful? I've got a 2 year old dd with CP and have received many messages of support on my own thread (previously ladylush) but would find it useful if there was a general thread that anyone could pop in and out of - so wondered if you might too. Sometimes I have to wade through pages of the SN board to find anything that relates to CP so it would make access easier.

Let me know your thoughts.

TIA

Thanks ladies :-)

Thereonthestair - the PCT have agreed to find the op (amazing news) but we will still need to fundraise for the physio programme. Lol at linking the Justgiving page. I wouldn't do it here when we all have children with additional needs who as such incur additional costs!

Sneeze, I watched several you tube videos on ABM. I was really intrigued and will try to gather more information on it. The ABM center is in California and we live on the east coast, so that may be a problem, but I can look for a local practitioner.

Such good news about your DGS saying his name. I know it will be a while for my lo but we will keep plugging away at it. :) My DS says "Hi" whenever you put a cell phone to his mouth. He must love to talk on the phone. Haha! It's the only word he can say right now, but it's music to my ears!

inhibernation great news re the PCT. You should tell us how you managed that one However you should link here and if not please pm me. We all have additional costs but in the scheme of things a little bit paid forward is neither here nor there sometimes but it all adds up for those who need it sometimes

Thank you Thereonthestair - very kind of you. I'll link when it's ready.
And please feel free to PM me if you have any questions about SDR or just want to chat about the journey - if that's what you choose to do.

I don't know yet how we managed it! I am intrigued to learn more but wanted to get dd's name on the waiting list first!! Possibly having the backing of dd's Neuro Disability Paed was key. She has done a compete u-turn on SDR and was at the panel meeting when funding was ratified. We were very sure about SDR and more knowledgable about it than her at first but she then met Kristian Aquilina and the physio team and this helped as she was able to hear about it from a fellow medic rather than 2 parents! I think she also respected our determination to do whatever we can for dd. Also she knows I am a nurse so have some medical knowledge. dd will be the first child in this borough to get funding for SDR and possibly the first to have the op.

Sneezecakesmum - how lovely to hear that DGS is saying his name :-)

Complete grrrrrr

DD and I are both nurses too and it gave us a bit of a head start when it comes to getting to grips with CP. most parents get there with research too, even the dreaded neurological side of it . I really think parents are ahead of the research sometimes, at least looking at innovative treatments. Pretty sure the push for SDR in this country came from determined parents! SD CP will become more common as more tiny prem babies are surviving. The next thing is to see if this damage can be stopped from occurring....which would be brilliant. Cooling works for term babies but DGS missed it by a whisker

DDs paed is totally unimpressed by her qualifications as an ICU nurse and treats her like a half wit despite being present when the neuro consultant said 'no spasticity in his legs or arms' she won't change the dx of spastic quad. She's in a minority on 1 so we don't care what she says!

That was exactly our position, sneeze. We got the physio to request formal re-dx, then had follow-up MRI, and neuro consultant re-dx to lose the spastic quad label. It was becoming ridiculous. As we moved so often, all of the referrals were being done with 'spastic quad' and dd2 would turn up. The new profs were always, 'eh?' And then had to reassign support etc. it was ridiculous. The pead refused to lose the spastic quad label, but the neuro re-diagnosed immediately on the basis of the new MRI and current clinical presentation. It was the most sensible appt we had ever had. at four. the only neuro appt we have ever had, too.

The Botox neuro said mixed picture and said he didn't need Botox or that drug, name eludes me at he moment! But she saw pictures of him long sitting with relaxed legs and couldn't see any benefit with Botox. The other neuro paed did all the tendon reflexes and said NO spasticity in front of DD and this community paed and it still wasn't changed. DD looked daggers at her with 'I told you so' ......but no budging. A new MRI would be interesting but we know its only basal ganglia damage so not a spastic type area, but don't fancy the trauma of a general if its not going to change anything. It doesn't seem to affect his support though. At some point DD will go for a re dx I hope, but tbh all the stuff I read, athetoid,ataxic etc none really seem to sum him up so mixed seems right, but what bits are what? So I guess he is an enigma for now.

Everyone that sees him says he is worse on paper than in reality and I bet you got that too!

Baclofen!

Well it's good that he doesn't need Botox or Baclofen. I never liked the idea of either of these drugs for dd.

dd had an MRI at 21 months but didn't need GA - was sedated instead (Chloral Hydrate iirc) and it worked a treat though she was like a drunken baby afterward

With the SDR really hoping your DD witH never need nasty drugs. So excited for you. Glad in a way DGS isn't suitable for drugs or operations as theyre all very scary, but the safety level looks so good. It's still going to be a heart in mouth time for you but the rewards look amazing.

Thanks Sneeze. Ikwym - a relief not to make the decision but for dd we have to. There is no choice really - spasticity is evil. We can't wait for dd to do its damage. It has already started with tightening to hips and misshapen feet. Yes the safety stats are excellent. Thank God! Yes we'll be so scared when she has the op but if not SDR she would have needed Orth ops anyway. At least SDR won't weaken her muscles.

Sorry - meant cant wait for IT to do its damage

I absolutely agree with you. Our friends DSs little legs were like lead pipes, they just never seemed to be relaxed. His mum could never get him to sit on her hip right from a baby. He has recently had the op and cant believe how relaxed his legs look.

DGSs legs are not stiff as such, just the extension pattern when he is excited makes them go rigid. You're right, somewhere along the line DD would need ops to release muscles and tendons, botox and maybe baclofen, so ops anyway. maybe even dislocated hips...horrible.

DGSs (4) SPIO lycra vest arrived and he has been wearing it for a few days. Its comfortable to wear and he doesnt get hot and sweaty (which he has a major problem with). DD has just phoned to say that DGS just did a commando crawl!!!. Only one little go till he got his ball but he has NEVER got anywhere near it. Think it may be a combination of better nutrition, his new lycra vest and HOURS of physio work by us, especially on his weak right arm. Its a vital developmental phase and he probably wont do it again for weeks but its amazing for a child who has ZERO coordination to achieve this.

This is the best Christmas present I could wish for and I know its something CP mums will really get

Whhhoooooo hoooooooooooooo fabby Christmas news!!!

DD was over 3 when she started commando crawling, I never thought she would be able to weight bare through her arms enough to proper crawl. She managed to get up though eventually and then discovered the dreaded bunny hop.

I know, can't stop grinning. Bunny hopping...bring it on!! DGSs arms are his weakest areas too, especially the right one. We just want him to get around on his own and let him get into mischief. Imagine 4 years and DD has a never used stair gate, cupboard locks, safety catches etc!!!! Think we will have to fess up to his physio about the lycra vest

sneezecake that's such WONDERFUL news! You and your dd must be ecstatic! Roll on the next little crawl! Really happy for you.

Sneeze - amazing news! So happy for you all :-)
Have you heard of Kinesio tape? dd's ex physio (who is fab) swears by it for high and low tone

Absolutely fab news Sneeze - what a great Christmas present

Hope you all have a Happy Christmas!!

Thanks you all v much. Will look into kinesio tape. We will concentrate on getting him moving again

Anyone who is oop north like us may have seen calendar news (local) and there was an item on SDR and we knew one of the kiddies featured and the walking was so amazing. This child had the most rigid legs I've ever seen, when he was little mum could barely put a nappy on....and here he was walking so beautifully. His mums smile could not have been broader. We were thrilled as she was raising money for USA but Leeds general infirmary have started doing them and this doctor was trained up in the states! His mum is a real tiger mum when it comes to her DS.

Happy Christmas all

I've seen it - it was linked on Facebook. It's great that there are centres North and South :-)

What do I feel so crap after a physio session?? It is only our 2nd one, but on both occasions I've left the hospital feeling down and glum. whilst the physio didn't say anything in particular, she doesn't seem to give anything overly encouraging either. I guess I feel stuck with little progress ..... I don't want to feel miserable on today of all days .......

In our experience the professionals rarely say anything encouraging as they are scared of being sued when their predictions dont come true.....or is that just me being an old cynic

verybusy I remember feeling like you do about a year ago. 1st session also. Physio told us dd would be unlikely to walk much at all but might be able to move around the classroom independently. I was devastated. A month or so later dd walked on her own. She can now walk for about 10 mins or so before she tires. After SDR we expect this to further improve. She was so callous and unfeeling. She also told me that dd would be a "good wheel chair user" as if that was supposed to be a consolation prize

It gets better - you will find decent professionals along the way. Don't endure anyone who continually makes you feel awful. We asked for a different therapist and new one is fine.

Merry Christmas and here's looking forward to 2013. Onward and upward :)