Support/information sharing thread for parents of children with Cerebral Palsy - Part 2

[Galena]

Can I start the new thread by saying, welcome to any parents of children with CP - any age, type, etc.

Looking back at the last thread, we have discussed treatment options, chatted about other peoples' perceptions, celebrated milestones, given support, and generally been lovely!

Come along in!

DD is 3.9 with Spastic Diplegia. Independent walker and attitude the size of a planet! We are considering SDR for her in the next year.

Yes, of course. We had suggestions to go to the Early Start people (I think) because they could give the preschool a grant to pay for 1:1 before/without statement. As it was we didn't need it although we have applied for an inclusion grant for an out of school club.

My dd had a statement when she was in pre school (well the last 7 months) as she only had one full year at pre school(due to being an August birthday), it was me who started the process of statementing before she even began as I knew there was no way she would benefit from being there without help.
Early Years Funding is now in place to support pre school age children who (most likely eventually will have a statement)to ensure that they can attend and access.
I would advise to apply for a statement when the child is 2 years old or before (as then the LEA have to assess the child) and it is better for the parent to do this, use the IPSEA website and the template letters available on there,

and remember 9/10 application letters will be refused immediately(in the hope that parents accept that decision) and then if only 5/10 of those parents appeal that decision then the LEA has saved time and resources and money (rather a short sighted attitude - but the LEA cares about its budget, not the individual needs of your child!)

(We were very lucky and haven't had to appeal or go to tribunal through any of the process - we got full-time support at preschool and at school next year straightaway. The delights of VERY supportive professionals!)

Can I check in please? DD (2.7) HIE II and RH hemi. Extremely mild but with seizure disorder and microcephaly we still have a few battles to fight for her. Attends mainstream nursery which has been an absolute godsend (my DH and I work FT) and her current issues are continued high tone in her right shoulder and down to her elbow and speech delay. However her right hand which this time last year wasn't used at all is now used for most activities and even has the ability to start isolating her thumb and fingers.

We pay privately for all therapy, did Brainwave twice, currently having a set of 6 SaLT sessions to evaluate the severity of the speech delay and determine the cause (whether it is oral motor or not). DD has poor temperature regulation which makes hydro hard but hoping to start hyppotherapy when she turns 3 if we can find a helmet big enough!

NHS OT discharged us a few months ago having seen her twice since birth with an advisory note that her concentration was poor and we needed to refer her again if that was still an issue at 3.

I've been reading all the additional therapies you are using for you dc and am confused. Which do we choose??? How long do you give it before you change??

We have had 8 lessons of ABM. Before the end of the first lesson, my daughter was babbling Bababa, gagagaga which she had never done we were shocked. We have seen improvement, She has started to roll (constantly when her head is slightly raised on a cushion) just a few times when entirely flat. But my concern is she most often screams through the entire lesson, stopping the moment I pick her up? Should we continue or is this doing more harm with her being so upset?? What does anyone think?? I just want to do everything I can to help her reach her potential

verybusy. We had quite a few ABM lessons and DGSs amazingly, didnt cry at all, ever, and he screams the place down at everyone else. The lessons were free as the practitioner was training and is now qualified. We didnt notice enough changes to warrent the expense of continuing though I would have loved to continue. I think starting younger may have been more beneficial. The practitioner came to the house, which I think helped. We also put the TV on and DGS looked at that for a while before doing the ABM 'zoning out' thing you have probably seen? It just distracted him long enough for the movement therapy to start registering. Maybe the therapist isnt right for your DD? Or is it the environment?. Maybe an ipad with cbeebies playing very softly to distract her long enough for the 'listening' to start? tbh children having ABM are supposed to be listening to the what their bodies are doing and distress may be overriding this to some extent. Odd that the therapist just keeps on, our lovely man was brilliant with DGS.

We didn't do ABM, however when we started doing PT via the Brainwave therapy (which to be fair the NHS could have given us had they bothered seeing DD regularly) DD did get upset because we were encouraging her to use her muscles and move in ways which were unfamiliar to her.

I found treating her sore muscles the same way we would feel after a run or strenuous exercise helped. We also found DD's muscle spasms worsened a great deal when she did movements which were unfamiliar. Gradually they have reduced and not required medication but there are times they trigger, growth spurts, illness, teething, development leaps etc make her stiffer. We did find distraction helps re PT/OT exercises and also being at home.

redwelly. With ABM the movements are passive, and the practitioners specifically do not stretch or move into painful areas. If they do they stop because pain signals block the motor learning pathways. So its probably some sensory or environmental issue causing the problem. Think verybusy will need to chat with the practitioner.

We also do brainwave, though its getting more difficult to fit the progam in as DGS is at nursery 5 mornings. And yes, he gets tired and foot stompy but he is dyskinetic not spastic so his leg muscles just get tired and he doesnt have spasms. I agree, maybe home treatment, and distraction.

Hello everyone. Just popping by, partly because I need a rant about DS NHS physio who seems to now be suggesting that DS crawls up and down stairs rather than walks with support - apparently it will give him independence. So the fact you spent 4 months telling us not to let DS crawl at all was wrong was it? But mainly to ask if anyone knows anything about building up resistance to botox. DS had it in October, and it was really sucessful, and his private physio says we should try again in May if we can, but I know there is something about building up a tolerance. Anyone considered this, had botox more than every 12 months, got good or bad experiences or links to papers?

I've only heard that botox doesnt work if the right muscles are not targeted and sometimes it takes a few goes to get the right ones. Not heard of tolerance building up though, but we dont have it so no personal experience. we know children who do though.

Thought crawling was really good for all sorts of reasons. Confused.com

I thought crawling was to be encouraged for cross body patterning and helping to improve the connections between the brain hemispheres. Isnt that why adults who can't crawl and are shown how to improve in coordination? Could be very very wrong though.

Our DD started to walk too early as it caused more issues, main one being increased shoulder and arm tone because her core was so poor. Physio missed it.

Crawling was good, but ds is 3 now, and crawling was supposed to be encouraging the muscles to shorten further whereas he is supposed to walk to build up his stability when upright. The nursery have also said they think the physio was wrong about what she was trying to do and ds was never going to manage. Not sure where to go from here....

Heavens, no wonder you are confused. Trouble with CP and all the attendant crap is you are constantly saying 'if we had only done this/that', 'if only we had known that!' Its a bugger all right!

Sorry slightly off previous topic but wondered if anyone could help?
We (DS and I) are off to Nottingham on Thursday for a SDR assessment or Baclofen Pump. Our orthopaedic consultant feels SDR more appropriate as his upper body is less stiff and he can use his upper limbs for on body signing. He is deafblind with no useful sight and profoundly deaf.
Any advice welcome as I must make the most of this 8 hour round trip.
The 1st appt is a physio appt.
Thankyou

Thanks Galena. Hopefully ds1 will soon start growing. We finally managed to get a Kaye walker for him today. Its a half size and it is still too big for him.

I have read that Crawling is definitely something to be encouraged, it is really important for brain development!
Sneezecake - thanks so much for your input re abm. Took your advice and I do think it is an environmental thing. She had a lesson today, we took her play mat, some toys and had ipad on playing music and pictures. She 'zoned' out for the first 3/4s of the lesson. Which is MASSIVE improvement. Hope it continues. Thanks again.

Crawling was something we encouraged, and ds can crawl with a reciprocal pattern, but given he can crawl well we are trying to get him to walking and getting around crawling is counterproductive to that goal...

Verybusymummy. So pleased things have improved. The more she enjoys her lessons the less unsettled it will make her hopefully for the next ones. The zoning out thing is when they are really learning. Bet your eardrums are happy too We have the book child without limits and the DVD set and try to use the principles in everyday life

If the child is a competent crawler then its reasonable to progress onto walking as that is 'normal' progression. We do walking upstairs fully supported because it teaches that pattern. DGS seemed to have too many long arms and legs to crawl anyway.

Hi 2Old. Hope someone gives you an answer re SDR

Hi everyone, I have a similar question to 2Old. I am seeing the orthopaedic surgeon tomorrow. Last time I went he was very dismissive of SDR and I had planned on doing some research before I went again but I have totally lost track of time and just realised the appointment is tomorrow, argh! Can anyone direct me to some good research/information on SDR? Last time he said that his opinion was that it was the PT after the surgery that had the most effect, and not the surgery itself.

I found the Bristol webpages very interesting reading when we were considering SDR. Although, of course, they are written from the perspective of a centre offering the SDR themselves.

Hi thanks for information on SDR Galena. Having read the web page DS seems much less able than their criteria and I realise it will be done for management as his legs are so rigid his care is so difficult despite intensive physio.
We went to Nottingham last Thursday to discuss SDR/Baclofen pump.
We saw a neurosurgeon and as we thought, DS not a suitable candidate for a pump and have decided to go ahead with SDR. As you rightly say Muffinpig physio is very important post operatively, goodluck
Just hope we have made right decision
Thanks

Galena, thank you so much. It looks as if DS would be a great candidate but he is only 3yo at the moment. I will take the info leaflet with me tomorrow and see what the dr says.
I seem to remember that you were fundraising to have your daughter's operation in the US? Is that right? Can I ask, if you don't mind, is that because the NHS refused to do it for her? Have you had the surgery yet? I hope all is going well.

DD is only 3 :)

We were fundraising, yes, but not for the US. Our local PCT wouldn't fund it on the NHS, so we have to self-fund. We're still waiting for the report from her physio assessment to see if she is a suitable candidate. If she is, the op should be by the end of the year. It has taken us since May last year to get this far - so it is important to get the ball rolling asap. I think they estimate in Bristol it will be about 18 months from referral to op. Leeds, Nottingham and Liverpool may be quicker. Also there is talk of them beginning to set it up at GOSH, but I'm not sure about timescales. Minimum age now for SDR in the UK is 3 (in the US it is 2)

Physio is hugely important after the op. 5-6 hours a week with a physio for the first 6 months after the op, I believe is what they suggest... then 2-3 hours a week for the next 6 months, and 1 hour every 1-2 weeks for the next year...

Last I knew about GOSH (from various sources including a friend who works in paediatrics at GOSH) is that they were still thinking but in practice no further forward. The job the consultant went for was not to do anything SDR and as a result he is no longer looking at that. My Local director of childrens service has even tried to get him to our area to talk about SDR from his bristol experience but at the moment he wont as it is not in his remit. As such and given there is no team or fudning at GOSH I wont hold my breath. I actually suspect it will be elsewhere in London first.

Thanks Galena. So how would I go about getting a referral to Bristol or any of the others? Would it be through my local consultant (orthopaedic surgeon). Given that he was very reluctant to even discuss it last time I don't hold out much hope.