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.

wondering whether Id fit in. ds is 10 with severe spastic quad. No movement at all or speech and he is tube fed, still in pads. He uses a head switch with a VOCA to communicate and drives a powerchair using chin switches. In 2 weeks he's having the intrathecal baclofen pump fitted so I'm a nervous wreck. I dont know anyone in rl who has a child like him - so physically impaired but at mainstream school. He also has had pretty severe epilepsy but we currently have that under control .
Our main issue is sleep. He wakes hourly either through discomfort (both hips are dislocated) or he stops breathing or he's just a pain in the behind. Any tips?

Hi infamous and welcome. Sorry, I can't help much with direct experience, but hopefully the baclofen will help a bit.

Have you heard of Special Kids in the UK - it's a forum I post on... There are quite a few severely affected children on there - some of whom are at mainstream school. A lovely bunch of people too!

I have. I must rejoin as I lost my password but was hoping for support on here too.

Welcome. This thread is for everyone severe, or mild, old or young. I think we all feel out of place sometimes. My ds is probably moderate rather than sever but there are others who will have more direct experience of the issues you face. And even if none of us have the same direct experience we are here to rant moan and support everyone.

I tried to get on SKIUK a couple of times, got paypal verified etc, but gave up as it just doesnt seem to like me! Everyone is welcome here I know of a boy who has a baclofen pump and it is excellent for him. I agree very scary though. Everyone has experience of something and if all that information is pooled there may be some answers for someone at some time. Its been my experience for sure

Hello all, I wonder if I can join your thread please? I've been on the sn board for a while, mostly on the bumpy path to diagnosis thread.

DS1 got his diagnosis on Friday of periventricular leukomalacia leading to cp. He is 4.5 and it's been a long old fight to get an MRI. He is unusual because he wasn't prem or low birth weight. He has motor planning and control difficulties but no stiffness, significant learning disability and a severe expressive language disorder.

We're still getting used to his diagnosis, relieved he doesn't have something degenerative or genetically inherited but still feeling a bit sad about it all. It would be great to have contact with those more knowledgeable and experienced.

Thanks

welcome hanbee I do hope your DS has been getting all the services, physio, OT, SALT etc despite the lack of diagnosis? My DGS is the same age, but a different presentation of CP, but thats what you find, children all present with different abilities and disabilities. Its all very confusing. I guess its a relief to know whats going on at last, 4.5 years is a long time to be unsure and to wait! There are a lot of people here who have a very wide knowledge of CP, and you will find that each little snippet adds to a bigger picture of understanding your child

choggers my DS now 14 is going for SDR on 14th June. He is a post pneumococcal meningitis (8months old)
However it is not for mobility it is to enable him to sit without spasming and also to help with his "cares"

Just as a point re toilet training DS was nearly toilet trained @ 7 and signing he needed "to go" but as he could only sit on a special toilet chair it was felt we were giving him mixed messages Use toilet at home and school but do it in your pad if we are out As he is deafblind as well as CP we sadly abandoned the process.
But it did prove our LOs are capable.

oldbeamum
oh im really pleased that DS can have the SDR i was aware it wasnt always to enable them to walk, i was just hopen it would be somthing that would be a possiblity to help him in some way but was so confussed when i seen it wouldnt be suitable for it because of the meningtis. did your DS have Group strep b? sorry im really interested as never meet anyone who has CP due to group strep b.

Galena
thanks i wasnt aware that they might change his dignosis as i have noticed that my DS right hand a lot better than his left he can use his right quite well for him.

will say i already feel better just by being invovled in this group. thanks guys :)

Hello All.

Finally decided to take a leap in to this forum, having been lingering for a little bit..thanks to Galena who pointed it out to me.

My daughter has very recently been diagnosed with CP, and though it is quite mild, I have struggled to come to terms with it-not only with the diagnosis but the feeling of alienation following it. It has been an uphill struggle just to get a diagnosis, and now that we do, I feel at a loss a what to do next. But this thread has been invaluable. Following Galena's lead, I've managed to arrange swimming lessons in a hydrotherapy pool for her, and have been to Bobath to have her assessed. The NHS have offered us no regular Physio support, though they have taught us a few stretches that they have asked us to do with her.The pt said she is 'too young' for intensive therapy.

I've read so much about SDR, but just wandered if anybody has advice on suitability? My daughter's CP affects her right leg, where she has moderately increased tone resulting in an ungainly gait and much tripping. Her recent MRI (which I had to literally kick and scream for) suggests that there are signalling problems with both legs, thought the left seems fine. When I spoke to her consultant about SDR(she's still seeing her neonatal consultant) he said he'd speak to a colleague about it as he hasn't heard of it but he thought we should 'focus on what she can do rather than what she can't'-whatever that means. Her consultant is lovely, but I know he thinks I'm neurotic mum (I know I am) but I just want to do my best for her. Does anyone know whether her condition is too mild for SDR?

we tried to get SDR even though ds would never walk or even sit because of the horrendous stiffness and hip dislocation and Mr Aquilina was interested in doing it as he thinks it would benefit severe spasticity as well but no-one would fund it unless there was a 'walking' outcome. With a 30K price tag we couldnt do it ourselves which is why we are going for the intrathecal pump. Should SDR ever start to be used for spasticity we will definately look into it again. I just hate the idea of a machine that can go wrong IYKWIM

infamouspoo I am completely baffled as to your PCT's attitude. DS sounds just like your DS except he can only communicate using Caanan Barrie method. Also horrible seizures I HATE THEM
The neurosurgeon said DS would not be a suitable candidate for a Baclofen Pump as he has a jejunal tube and a cochlea implant which could be a source of infection with more foriegn bits in his body. But he definately will not walk Just a thought both my DC's have got Continuing Health Care Plans this may have helped his cause. Good luck

choggers Despite being a midwife and a very old paediatric nurse I am not sure about Strep B and CP, DS 's pneumococcal meningitis is known to be pretty evil (I am not a drama queen BTW) but any meningitis can be quite catastrophic in some cases
Take care all

I have found a lot of health care professionals are wary of SDR because it is still relatively 'new' in the UK (In fact, in its basic form it was used in Victorian times, but with no 'selectivity' in the nerves cut).

However, our (new - old one retired) paediatrician was delighted that we had chosen to go to Bristol rather than the US. She felt that, because in the UK they are still trying to prove its effectiveness, they would only select children for which it would have a good outcome. Unfortunately, it's not funded so we had to raise silly money for it. :(

Oh, and fadhsamum, I'm glad I could give you some support. Sounds like you're doing just great at the moment!

Our PCT will only fund for SDR if there is a walking outcome. Its all about money. So we had a great surgeon willing to do it (he's at GOSH now) who said it would be of benefit. But no, pump it is with its potential for infections and instant death (he has a G-tube alrday) or find 30K plus 20K for afterwards physio. When we saw the surgeon there was a family there whose son used to be able to walk with a frame and he lost his walking due to horrendous pain and spasms and they had to fund SDR themselves even though their son used to be able to walk with his CP (mild/moderate. The lad can talk and use his hands and stuff and sit). It was the fact they also had to fund the aftercare that shocked me. I saw them when we had the pump trial and their lad was walking after the SDR. That PCT should be ashamed and should be funding it. They will now save a fortune in equipment.
Obviously ds would never walk but how much are pumps? refill appointments. Emergency trips to hospital every time he seems 'odd' in case it might have gone wrong. Changing the battery every 3 years etc etc?

ds's paediatrician told me 'off record' he thinks its because ds isnt expected to live very long so is seen as a waste of money. He said you wouldnt believe the discussions they have regarding children.

Every post I read about SDR horrifies me. Do they not value our children. My son died 10 years ago and was on TPN for 5 years and his death was no surprise never was he refused treatment.

whats TPN?

Hello all. My paed is probably a bit wary of SDR. Not saying no, but saying that the optimum time will be when DS is 6-7 rather than 4 ish. She is however sayign that when it is the optimum time the NHS will fund. Not sure if I believe her though but it seems or NHS will fund.

I have to also say I am not yet sure it is right for us either. Partly because it is new, and the long term studies while encouraging are not as encouraging as I would like, but also because I feel that so much can still change for DS that i would like the stability in what we have before going ahead with SDR. I am sure we would get a walking outcome with SDR, but if I can get one without so much the better.

DS also has difficulties with his hamstrings/hips rather than calves so he is not like most other SDR candidates and it seems as if there is little problem with his feet (thanks to hypermobility) but he just can't extend the hips.

As for focus on what you can do rather than what you can't - well how is anyone ever going to learn to do anything with that attitude. We all need to learn how to do things. Our children are no different in that respect. I accept of course that DS will never run the marathon. I do not accept he may never run (although it is highly unlikely). As for too young for intensive therapy be very wary of that. It is harder to do intensive therapy with little ones, but it is not impossible. It also depends on what counts as intensive, but the more you do now the better if the little one will tolerate it, it is also easier to motivate them when they are younger (I found).

On a more negative note this weekend I asked DS what was wrong with him when he got upset to which the answer was "I can't walk" that broke my heart depsite the well not everyone can do everything answer and we are all good at different things answer I gave to him. I knew there would be a time, I suppose i just hoped I would get a bit longer.

ds went through a period at 7/8 when he realised that he was 'different'. Despite being very severe - its like he has locked in syndrome - and partially sighted, he hadnt noticed until then. Suddenly he didnt want to hear the word 'disabled' in books or films. Didnt want to wear splints, do therapies and got very depressed. I think he realised that despite constant hospital he was never going to get 'better'. He's in mainstream school and still gets down patches as he has the worst CP in the school (the other kids can use their hands or talk) but counselling has really helped as well as meeing adults who communicate using VOCAS who are at university and living independant lives with PA's to help.. He still wants to play football so the school rigged up a leafblower to use with his headswitch and he blows a giant inflatable ball in the game.
I guess we'll get another bad patch when he's a teenager and notices girls. He had botox into his salivary glands to stop the drooling and that has helped his confidence as he was reallly self conscious about that and we have put insults on his VOCA so he can tell people to bog off if they are staring but it is heart breaking. I'd settle for some speech and the use of one arm to be honest. Oh, and the ability to watch TV. He gets very very bored. At least he likes music although I cant say his brothers introducing him to Michael Jackson has been my idea of fun...

I love the idea of an inflatable ball. It sounds as if the school are trying to be inclusive. I also have never heard of a mainstream school with more than 1 child with CP. I do hate the idea that any of us "settle" mind. Which is what makes me so angry about the whole SDR debate, and the fact that a child is too little for intensive therapy.I know one or two adults fully included in mainstream life as adults with wheelchairs, voiceboxes etc, and try to see it as hope that the world is changing. Sorry not being very good with words here.

infamouspoo what a spirited lad you have I would love it . Like you I would settle for just a little more maybe to hear, see and communicate.At least my DC does not know he is different
We just have to keep going.

BTW you asked what was TPN intravenous feeding (total pareteral nutrician) cost £150/night 7days a week and they deny kids SDR.
Sorry I do go on a bit!!

Infamouspoo. I am so pleased to hear that your DS is managing in mainstream. DGS is due to start in September when he is 5 with a 1-1. He can use his left hand and we think he has potential to improve but his lack of speech has really worried me, but hearing your DS is managing is so encouraging.

Don't get me started on group strep b!!! It's f##### preventable if only the tight arsed NHS would fund it! It's not even expensive and it would save hundreds of babies from this crippling disease. I paid for my DD to have it with both her pregnancies after reading what a horrible disease it causes. She still has a disabled child but for something entirely unpredictable. It's infuriating

sneezecakesmum i wasnt aware that strep b was preventable, mind it frustating that they dont test for it in the mother in this country unless there is reason to! yet they do in some poorer countrys that i have recently found out. we have taken leagl advise on it as i have been told have a child with CP can be very expensive, again somthing that is new to me but so far everything harry has needed with have been given bt the NHS so what sorts of things is it that we will need to pay for? (again one of these things i dont understand)

also not such a nice question to ask but its somthing thats puzzled me now for a little while, i was told by the doctors that CP dont effect life span but everything i read says sever CP does and we have been told that he will proberly be server? sorry to ask such a morbid question but i dont really understand.

one last thing what does DS mean and DD?

Dd is darling daughter and DS darling son. I have a DGS (grandson). [Smile] Just abbreviations really and annonimity I guess.

I just came across group strep b from a newspaper article and because I am neurotic cautious paid for it. Midwives should be able to give info on private tests which cost around £30 if the NHS won't provide it free so you get informed choice.

Don't give up hope that things may improve. There are many parents given poor outcomes for their children who prove everyone wrong and do pretty well! And don forget CP evolves over the first 2 years and children who are stiff as babies can become quite floppy. DGS was diagnosed spastic quad and he is now more athetoid, so no coordination, or balance and fluctuating tone everywhere. Lifespan for severely affected individuals are sometimes less but it's because of other problems like pneumonia, infections, epilepsy rather than the cp as the brain injury is pretty stable.