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 sorry I perhaps wrongly assumed you were aware its available in the UK. Main obstacle is waiting list - it certainly wouldn't have been 2 years if we'd have opted for the US initially! Also not every child is accepted - which some might think is a good thing and in some cases it's probably right. However, I'm concerned that some children who are deemed milder or more severe are being rejected here but accepted in St Louis and I think that's because they are less able to make a definitive prognosis.

Thank you all for your replies!
No-one involved with her cp stuff has ever said she is likely to deteriorate or is likely to need surgery, they only said that there is a possibility that she might need orthopaedic surgery at some point later, maybe in her teenage years, to help with the positioning of her feet, ham strings etc., but that for now there is no sign of things developing that way.
We do have a 2 year old dd2 as well muchado.
How do I get my foot in the door at the Bristol hospital? Do I need to get a referral from our Paed or can I contact them directly about an assessment?
Is SDR in Bristol private or funded by the NHS? And wrt fundraising, could you give me some idea of what kind of things you have done for it? E.g., do you approach lots of charities? Do you ask around at work if people are willing to help? I really have no idea
I will definitely have to do a bit more reading-up on all of this, so I can make a more informed decision. Thank you all for your help!

Jokat - are you on fb? There's a fab SDR page on there set up by parents and it's very informative & supportive. You can get a referral from your Paed or GP. They shouldn't refuse you as all you are doing is asking opinion from the people qualified to do so. There is no funding at all right now but hopefully commissioning through evaluation should start soon. The surgeons at Bristol are Mr Edwards & Mr Pople. There is also a clinic at Gosh - Kristian Aquilina is the surgeon there. You can also self-fund but it doesn't make the queue shorter. As for fundraising - we did a quiz night and a bike ride and mufti day at the school. We plan to take it easy and do events over the year as we are far too busy to go hell for leather.

Thank you inhibernation. Will check it out.
Has anyone heard of a child whose surgery has gone wrong? On Henry's Site it says that there is something like a 5-10% chance of the op going wrong and resulting in permanent paralysis of legs and bladder etc., which, again, I find quite scary. But when I hear people talk about they only ever seem to report huge success and improvement! Which of course is great

I'd be very surprised if that's an up to date statistic but even so it is a theoretical risk and to put it into perspective it is only meaningful when compared with other surgeries. At Louis have published data which lists complications. They've done more than 20k ops and none if the pts had enduring complications. Some had temporary bladder weakness and a few had leakage of spinal fluid which was treated/resolved.

St

Wow inhibernation you really know your stuff! A good point about comparing risk with other surgeries.
Thank you again for the FB page suggestion, I already feel better informed and have only just started going through the posts.
Am I correct in understanding that I could get an assessment funded by the NHS but the waiting list for this is longer than if we paid for an assessment?
Also, it was said that Leeds offer better after care than Bristol. But I haven't come across any feedback on GOSH wrt SDR being done there. Any idea how that compares to Bristol and Leeds?

Sorry, I know my questions are all over the place, I'm just trying to build up a bigger picture and my head is housing utter chaos at the moment.

They all have the same selection criteria; ostensibly GMFCS 2-3. Is your dd a 2? I'm not aware of a difference across the centres in terms of physio provision and everyone Ive spoken to whose been to Bristol speaks as highly of it as those who go to Leeds. However, the waiting list is huge at Bristol. And now that all funding has stopped whilst CTE (commissioning through evaluation) there will be a further backlog. The UK SDR centres are focusing on improvement in function - not just reduction/elimination of spasticity. That has led to some milder children being rejected or less enthusiastically accepted onto the waiting list! However, Dr Park (St Louis) is of the view that all spastic diplegics deteriorate eventually so he strongly advocates early SDR. Certainly I have seen many pre and post videos of children who are at the milder end of the spectrum who have done very well post SDR. Also there are adults who were once mild who post on the fb forum having had SDR as adults and they describe the deterioration. I suppose I'm warning you that your dd may not be accepted in the UK but it doesn't mean SDR won't be helpful. There's a finite pot of money & in collating data for long term evidence (for NICE) they need to select carefully.

I am aware of 2 children who have had complications when having surgery in St. Louis. I think that in both case it's temporary but I don't know enough about the circumstances.

Personally I do remain concerned about complications but not bladder complications. I am also concerned about St. Louis because they can't do follow up on patients as they have a global practice so children go back home and aren't tracked. In the UK they don't have long term follow up because we haven't done the surgery for long enough. The studies from elsewhere are positive though with little risk of complication.

Don't get me wrong we are having an assessment for ds for sdr, but know it is not a magic wand, and remain concerned that the risk may not outweigh the benefits.

It's not true that children are not followed up. There is excellent communication between the SL team and the child's family via video, email, t/c or fb and there are video reviews. Plus many families return for face to face reviews after 1 year. Dr P still keeps in contact with patients years down the line. He answers questions on fb as well - have you ever known a UK dr to that?!
Re complications - what were the complications you refer to? It's useful to know the detail if you have it. I do know that some children have had infections to a PERCS wound - some children have lengthening shortly after SDR. I am aware that a boy who had SDR in the UK had catheter related complication but nothing related to the SDR itself. I've read the SL stats re complications but there's no reference to where the patients are from.

Incidentally one parent told me that the care at Bristol was excellent but the aftercare not good. I guess that's the limitations of au under resourced service. The UK surgeons are fantastic though.

I am not saying that there is no follow up where the parents engage. But it cannot be complete as not all parents want to do that and there isn't a reliable system to catch everyone. i think that is fair enough by the way as if you have come from half way round the world and get good results why would you. Some people would but to be honest I wouldn't as I wouldn't have time. So there are no complete statistics on post op follow up.

Please don't take this the wrong way I am not saying don't go to St Louis. I think for some peopl it is the right thing to do. personally I would never do it as I do not want to have an op in the US where money is part of the equation. I respect those who do and I believe that we should all be free to do what we wish. All i am really saying is that there is no complete information on all patients and so the information may well be incomplete and in making a reasoned decision I think it is important to take that into account.

Complications I have heard of are loss of mobility over the medium term - not yet got back to pre sdr at 2 years plus post op plus an infection which is not clearing up. As you say infection may well be nothing to do with SDR but catheter complication is a complication of having a catheter which I assume he had given he had surgery. I am also aware of another child who is suffering from depression post sdr which appears to be related. Again it may not be, or it may be a price to pay. It is not bladder, and it may be CP, or life or a hundred other things.

I think we should all look at this with open eyes. I am actually gettin ds assessed for SDR as I have decided it might be the right thing to do for him. BUT I am also looking at SPML and various other otpions too. I also suspect that if DS was less disabled than he is (borderline 2/3) and was a level 1 I would not even consider SDR. I just don't believe it is the magic wand. That is not to say I don't support all of those who do.

And yes I do know a UK doc who stays in touch. My neonatologist does. Also all UK docs I deal with are very happy with email follow up and do so by return and on holiday.

So much food for thought! And I haven't got a clue what GMFCSstands for, let alone what my dd is on that scale. Should I ask our physio?
And much may I ask what you will pay for your assessment and how long you will have to wait from the time of referral? And what made you choose to go to the particular hospital that you will have the assessment at?

Jokat my dd is gmfcs 1-2 and her CP is very mild with low/fluctuating tone but no spasticity. She walks ok and can run, jump etc but we've also been told to look for issues with in toeing and gait in the longer term. However a lot can be done through physio and wearing the correct footwear etc to prevent need for surgery apparently. It's definitely a worry I have at the back of my mind towards adolescence though.

A mum on here had SDR (her DS actually!) and only waited a few months. So you should be given a waiting time at the consultation. To wait 2 years is appalling

I'm not sure of the technicalities, but does St Louis remove only one vertebrae making it safer? Don't know why I'm asking as its not for us Guess I know there are differences.

Jokat this book here tells you all about the GMFCS and how to grade your child

Thank you sneezecake for the link.
That's interesting inhibernation. It was a post on the fb page that said they paid £800 but that they think it is something up to £2000 now for the assessment, and then £22500 for the operation itself.

inhbernation. I don't think you should see it as having wasted the time. You looked into it, in the UK and in the US. You looked at your options and had consultations. You knew what mattered to you (school how quickly it could be done) but also what perhaps mattered less (loyalty to the NHS - not sure any of us have that any more) and made the right decision for you. Yes it might have been better to go straight to the US. The crappy thing with any kind of sn is we never know. It might have been better if I had had DS bu C section earlier then he might not have had cp.. . but I will never know.

Muchado - main reason I rue the time lost is because during this time dd may have developed deformities that require further surgery, which perhaps could have been averted. Then there's the emotional cost to dh, myself and our close family. I am in conflict wrt loyalty to the NHS as I do feel fiercely loyal to it despite it's flaws yet cannot deny that it has not served us well!

Sneeze - SLCH perform limited laminectomy (single level), same as the Bristol, Leeds and Gosh. Oswestry do multi-level.

Jokat - Yes the cost of assessments has gone up considerably from approx £800 to around £2k. Not sure if gosh charge for assessment. Perhaps you could ask on the fb group whether self-funders are still moving through the list. I know that otherwise the list has ground to a halt whilst CtE is set up.

sorry re typos. Typing on iPhone!

Having a bad day. My dd is so difficult lately, she is so frustrated. The physio saw her yesterday re her pulling to stand and was really pleased as she was doing many positives but equally there were a few patterns we need to try to break up. I feel so overwhelmed as she has given so many pointers and exercises. Wil she ever be bale to get up herself and will the frustration end?
How old were your little ones when they could transition from one position to another? May be she won't ever manage it, the not knowing is so hard.

I've also been thinking a lot lately about her cognition. How/when will I know if she is affected? She can point to body parts, understands pretty much all I say but doesn't much like the word 'no' but I think her speech is a bit behind, babbles constantly but only a few words. She is 16months.

Summerday - dd was unable to transition from sitting to standing even after she was able to walk so many muscles are involved in these manoeuvres.

Sounds like your dd is doing well with cognition and speech and babbling is a good sign. She sounds very much on track to me. Have you had a SOGS assessment with HV yet? That might reassure you..

Summer - your dd is still so young. My dd started walking at 2.5 - a long time after she started using furniture to pull herself up @ 15 months.

She still couldn't get up independently for some time after she started walking. Transitions are difficult.

Thank you for the replies.
That makes sense about transition being hard.
I think it's still being stuck in baby mode which sometimes gets to me, especially when I see my friends babies, particularly those who were born a lot after gaining their independence and seeming easier.