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

Hello everyone. I have been off lie for so long I am not sure where to start. Hariy its great about the SDR. How did you finally decide to go for it. And Galena why are you looking into it. I am never sure how anyone is supposed to know whetehr it will work or not, or who is a good candidate. I know it is too soon for DS but the studies all seem inconclusive. Ditto Botox.

Also great on the whizzybug. Before I had DS I got my employers to contibute to some local fundraising for one for child I didn't know as they are so expensive. But it sounds great. Never thought it would be somethign I would think about again.

Nothing much changing with us. Ds has his 2 year review tomorrow. I am dreading it. He still can't walk and actually have now decided (for the moment) that he doesn't want to as he crawls so fast i can hardly catch him. he won't use his walker and so I feel like I should just give up for the moment. Everyone says he could walk if he wanetd to but given he's 2 he clearly doesn't see the need!

Hope your review goes well tomorrow thereon DS sounds good with the crawling. I am sure he will walk ok when he is ready, he may just feel insecure upright so please don't worry.

long time since I posted. Sadly dd is going downhill. 3 chest infections this year so far and her tone is so high now she is in pain. We're still waiting (9 months now) for the intrathecal baclofen trial. One hip is now out and the other pops in and out.
She is also very depressed and used her communication device to say she doesnt want to be disabled. No answer to that really
I just wish she could use one arm and say some words. I think she'd be happy then. She is 8.

Kalskirta as I said in the other thread I am so sad for you and your DD people do not understand that our DC's get depressed. DS uses on-body sign language and no longer signs good boy. please keep in touch.

Kalskirata I have nothing really to say apart from keep posting, and we are hear for you.

sorry, I dont post often cos dd is so severe. I feel a bit isolated. Not anyones fault but I feel a bit alone.

I have always believed that this thread, and SN generally is for us all whether mild or severe, good days and bad days and for everyone to have a place where isolation can be relieved if only temporarily.

Totally agree. Not everyone will 'get' it when LOs are severely affected, but I think everyone feels some degree of isolation simply because the children we love are different. But if it helps in any way to know you are not alone, please anyone post here.

Sorry everyone but is SDR selective dorsal rhitzomy? I think I have spelled that all wrong.

I asked our physio about this today but she said that DS is too mildly affected by CP for SDR and too functional ... I don't like the sound of the operation at all, but it seems to make more sense to switch the 'wrong' nerves off permanently as opposed to temporarily with botox.

Thank you for the explanation Hairy - but I couldn't get my head round it at all! I feel so stupid sometimes! Perhaps its because they are doing Botox for DS to increase function and not to delay contractures. I think/hope that contractures may not be imminent with him.

If he is going to be using other muscles then perhaps the ones they are botoxing are of not much use to him ??? I don't understand how they can stop certain muscles from working if they might still be useful and necessary for movement.

Skewi you are right re the SDR. It is an extremely scary operation but the results seem excellent. We are glad DGS is also not a candidate as his CP is the wrong type. We have a Botox clinic this month as I will go to that (don't usually go to appts) but am interested on seeing what they say, as I think the reason DGS has a bit of tightness is because he doesn't walk unaided etc and we have neglected the stretching . I hope he doesn't need Botox because of our (unintentional) slacking. DGS has had enough without Botox!

Not really sure of the physical effects of Botox and long term use. All scary.

we asked for SDR but they wouldnt accept dd as its only done if a child may walk. dd cant even sit but I figured it would release the terrible spasticity in her legs. Its so bad now that her hips are out and I struggle to open her legs to change her pad.
She has had botox every 6 months for several years. It helps for a bit and keeps the worst of the contractures at bay. Its done under a GA as a day case and she is fine. She has it in hips, calves, ankles, shoulders, elbows and wrists. Now her contractures are bad as well as waiting for the intrathecal baclofen pump we're considering tissue release surgery. I'm going to leave her hips out as they dont hurt but her feet turn in at 90 degrees so the tendons will be cut

KalSkirata - I posted a long reply to your earlier post but my iphone crashed and the message vanished. I was so sad to read your post but I agree with what the others said. All of our children are different and affected by CP in a unique way so it will always feel isolating regardless of severity. dd goes to a therapy place every 3 weeks or so and one of the reasons I wanted her to go there is so she could mingle with children like her. However, not one of them is! dd is one of the most physically challenged in her small group, but has the best speech. She is also the youngest by a long way. In fact, the coordinator said it is much harder to match up the "more able" children. It is natural to want to meet someone who has a child very like our own so that we can feel that the person understands what is happening with our child. I still hope to find that person -but til then I will use this forum! I also think that early years services are missing a trick by not offering a contact a parent system whereby parents of children with additional needs can communicate with each other.

Skewiff - I too am very confused about botox. I am much more up to speed on SDR, having researched it for the past 16 months. There are two versions of it; the type that is done at Oswestry and the type that many British children have gone to St. Louis for. The latter is the one we are interested in dd having, and it is now available in Bristol, Leeds and Liverpool. As for funding - well that's another story! Postcode lottery. When we first looked into it dd's Neuro Paed said it was too drastic for moderate diplegia - better for quads. Now she has changed her mind and is being more supportive. A lot of medics and PTs are ignorant about it. There are some SDR fb pages (one St. Louis and one Uk) which have a lot of info and pre and post SDR videos (which are dramatic and impressive). I hasten to add that we didn't just rely on fb to educate ourselves! dd can walk a little in safe environments but we know that spasticity can take it's toll on independent ambulation - then there's the risk of contractures. We were told that the group who benefit most from SDR are those who fall between 2 + 3.5 in the gross motor classification scale. dd is considered a 2.

thereonthestair - hope ds review went ok. dd wasn't walking at 2 though she did walk with a walker. She started independent walking at 2.5 yrs. Why do you think SDR doesn't have an evidence base?

Sneezecake - great luck about the kitten

Re SDR we also spoke to a Neurosurgeon who is a kind of friend of the family. He described SDR as so meaningful in terms of what it enables children to do that parents feel as though they have won the lottery. Which, I thought to myself, is just as well seeing as they need to rob a bank to pay for it in the first place

inhibernation I posted about the assessment on a differnt thread as I ended up musing and didn't want to hi jack this thread with what I felt were quite frankly musings. it's here

www.mumsnet.com/Talk/special_needs/1495257-Bayley-Assessment

assuming I can do links which is questionable.

DS can walk with the walker. He choses not to mainly but has been ok with it for a few months.

In respect of SDR when I have read the medical papers I have been unconvinced and obviously have read nice and some other peer reviewed stuff. I am not saying it doesn't have great results in some cases, as clearly it does with Hairy and others, but it also says levels III/IV on the gross motor classification so worse than inhibernations figures. On my reading I didn't think some of those who have been discussing it had been at that level. Not of course that levels mean very much. It may just be that given DS is still little I am not there yet, equally his physio thinks he is right on the border between level I and level II and he is also not yet getting more spastic as he grows - for example he can put his feet flat on the ground. If he could walk it might be less severe than that but as yet he can't. I also think it would make much more sense to focus the resources on severe cases ratehr than milder ones.

I am genuinely curious about why people are choosing SDR, particularly when the Physios etc seem sceptical. I accept some fo that is cost but not all of it. Also even at St Louis they seem to want milder cases and often those who are diplegic not quad, and prem. On that vasis DS should qualify if he is severe enough. I don't do facebook though so maybe I am missing out on anectdote and the research has not yet caught up. It does seem things move very fast.

I also totally agree about meeting a child like DS. I seem to remember madwoman told me in fairly stident terms that you could not get an identikit child and for the moment I am using this forum in place of that. Perhaps we should all try to meet up though although that's probably not realistic given we live all over the world. I would love to see the bunfight on AIBU if we all tried to get on the same bus somewhere!

SDR not on the cards for DGS but I think it can have good results for moderate to severe spastic diplegia. A friends DS is awaiting this and she couldn't have done more in the way of therapies to keep him mobile but he became incredibly stiff despite this. (he had regular Botox and was on back often) Mild cases can be managed with Botox and surgery to lengthen tendons etc.

Never found another child like DGS. In fact no two kiddies at hydro were the same either! Mad woman's DD sounds similar ish to DGS but her speech was better despite earlier swallowing difficulties. Will never understand CP!

Thereonthestair - I think you have been looking at a different type of SDR to the one I am referring to. The NICE guidance is out of date and research base flawed. But you are right to question whether it would be helpful for your ds - possibly not given that he doesn't have much spasticity. dd otoh has it ++ so she walks on her toes and is very stiff in her ankles, hamstrings and abductors. If we don't do SDR she will need multi level orth surgery and may lose independent ambulation. I also worry so much about contractures. So that's my rationale! I am a HCP myself and I question everything medical because I've been in the system long enough to know that wheels move slowly, pharmaceutical companies are powerful and defensive practice is the easy option.

As for 2 yr check up - agree. Doesn't yield much. Am sure they have a huge threshold to allow for 2 yr olds being 2
Btw, wilful is good - will help ds deal with what life throws at him Chip off the old block eh DH says the same of dd and me

Jjkm....how odd re the swallowing and speech. Taking forever to get head around CP then the speech issue rears up and back to the books to find out what's going on. CP is like that, think you're getting to grips with it then it throws you a curved ball

dd can do 30 degree stretch too - not sure if that is normal or not. I too have lost track of what normal is

Have I killed this thread? :-/

I have name changed because of what I am about to write but have been here from the beginning of the thread

Having a crap time here. Am once again very pissed off with the NHS and life in general.

As regards our current situation, have given up on orthotics and splints for DS. He is houdini, he can get them off. Nothing helps, they fit, have been remeasured adjusted and then refitted. He can still get them off when he has very supportive boots over the top. Physio says don't bother using them. Also DS wont walk. He just wants to crawl all the time. He won't use the walker even though he can.

He still can't walk. Seemingly getting no closer to it. Physio says he still doesn't have the core strength or coordination but it will come. How she can also assess at between level I and II is beyond me. But there you go.

But that's not the main issue, main issue the rest of the prem follow up which is awful. Got the report back. No letter, no follow up, no opportunity for discussion just a report. Report assesses DS as in bottom 5% for cognitive behaviour, 13% for language and 1 percent for motor (which is to be expected given the CP and Physio says has no value as a prediction). Roughly assessing at 18 months equivalent. (he is over 2) The letter says his development will change over the next few year but is not necessarily predictive. My own instinct is that cognitive function is fine, and that it is ahead of language (not what the report says). But if he is going to be stuck and slow and keep falling behind can they tell us that and then maybe I can adjust. If he is not can then tell us that. It seems not to adjust anything for CP but maybe that's just the way of things. DS did the whole report standing up which for a child that can't stand independently I do wonder about.

And I have no follow up, no appointments for any other help nothing from them. Neontatal paeds passed us over, new paeds not been in touch. So I don't know whether to just ignore the report or to pay it attention. It says various things about Ds in the test that I just disagree with about what he did not do (some that I accept he didn't do, some that i saw him do but which he didn't score for) Als

NHS cancelled a respitory paed appointment without telling us, so we turned up to the hospital and they said sorry no appointment. I had even bloody phoned them 2 days before and they said no full joint clinic with resp and development paed. Got there zip. If we'd have had the report prior to then maybe they might have told us to bugger off then too. neonatal paed diddn't even speak to is. Resp paed saw us but wasn't interested said well if he has not been in hospital then just deal with your gp from now on. I suppose I should be grateful.

My real problem is I just don't want this. I just can't keep doing it and picking myself up and more to the point I just don't want to. When DS was born I thought he would die. I regularly wish he had died. When he diagnosed with CP I wished he had died when he was born and frankly I often still do. I do at the moment. I genuinely believe it would have been better and I feel so guilty for saying that. I do not believe that the doctors should have resussitated him given his prematurity. Personally I do not believe that the parents should not have a say in this given its the parents who have to live with the follow up or lack of it, and lack of care afterwards.

I would have coped with death. I cannot cope with this. I am not the parent he needs. I am not patient, and I am too disappointed. I cannot face the daily battle. If I thought that all we had to deal with was CP maybe I would manage. But now it seems language is a problem and his behaviour is even younger and falling behind. I was not cut out for this. I do not want to be DS mother, and I wish he would either die or could be adopted by someone who would cope. I genuinely believe it would be better for me, and for my husband and possibly even for DS. But I am not allowed to think that, and instead I just have to keep putting a happy face on. I am not happy. How can I hide that form DS, how can I act like it doesn't matter and that I don't regret everything that happened. How can I not give away that I am disappointed and that this is not the life I want. I genuinely don't see how I can do this. I am full of respect for those who do, I am always really pleased when I hear about your childrena nd what they achieve. I just can't see that for my DS. All of you with mild or moderate CP children seem to be able to say the children are bright and clever. Well in out case the NHS doesn't think so. But the disability is not so severe that DS will need more help. So its just down to me and DH.

Before anyone says it I am also not depressed. I have been depressed and this is not the same. The doctors also have always been alert to the risk of depression but I am not it. I am upset and unhappy but that is because I do not want to be DS mother any more and I don't know what to do next.

Augustus - obviously you are struggling hugely. If you are who I think you are I have often thought your posts come across with a bit of an edge. And I could pick up on the disappointment.
I don't want to undermine anything you've said but I am sure many of us have felt some of those emotions at some point post diagnosis. I am usually a very contained person not prone to emotion. However, when I found out about dd I cried for days and cried so hard my chest and head hurt. I hated that loss of control but now feel it saved me. It enabled me to move on from that stage of bereavement. I wonder if you are still stuck in that journey if you see what I mean? My h once told me not to get caught up in the rise and fall that happens when you see various HCPs and he was right since many have been wrong anyway.

You don't mention your h much and I wonder how much support you are getting with your ds - and for yourself. You seem very isolated.

Would you consider counselling? I really think it could help you - and help your bond with ds. If money is not an issue you can shop around to get an excellent counsellor. Please keep posting

Maybe I am stuck. But I cannot mourn the child I didn't have. I want to mourn for the one I do have. I thought I had got more used to things, but clearly I haven't and never will. That's why I don't want to do this anymore, and can't help but think that just carrying on as is is not right for me or my family. I am isolated. I don't feel I fit anywhere.

Have tried counselling before, think about trying it again, but all the docs say you are fine but neeed to work less. Work is the only part of my life that is not crap so why would I do less of that.

At the moment I wish I had no bond with DS, then it would be easier.

I try not to get caught up in the healthcare system, but then various friends tell me I am just being defensive and I need to listen to them and accept everything.