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

I think it's too early to say you'll never get over it. That's your mindset now. If you are helped to deal with these feelings it is possible your perspective can change.

I too found comfort in work. If money were no object I would cheerfully pay someone to do dd's physio every day so that my time with her would be normal mum and toddler time. Oh and a PA to manage the appointments! Those are the things that make me feel compromised and resentful.

As for trusting all HCPs - they do not know everything. I listen to what they say and then I do my research (some of it here!) and when we had a negative PT who said she was listening to us but clearly had her own agenda, I asked for a new one - who is MUCH better.

Re splints - we are lucky as dd has tolerated hers very well. What is the Orthotist like where you are? Have they suggested night splints?

You mention that ds is not walking. What were your expectations? We knew that some children with CP who are predicted to walk don't walk until they are 7 or even older. So we were pleased when she started to walk at 2.5.

Counselling is trial and error. You have to find someone right for you and you might need to try a few. Counsellors do not diagnose - they would not tell you nothing is wrong. Clearly something IS wrong. I wonder whether you meant a psychiatrist or psychologist? And there are so many types of counsellor. I have had counselling twice - once via work and the other time I paid. The free one was psychodynamic and I hated it. The latter was humanist and very nurturing but challenging too. Incidentally both were for the same issue - I was going thru a very difficult time in my marriage. My h also tried a different one before we decided on the latter. We did a bit of couples counselling and then he saw them on his own
Trial and error.

Augustus,

I really would recommend some sort of counseling too. My DS is affected very mildly, and so I have never thought it would be better for us all if he were dead. However I have struggled hugely with the small (in comparison) obstacles we have been given to deal with. I am not very patient or OK with all of this either.

I try to stay positive and to keep going - and as I say it is a lot easier for me to do this. The early days (up to about 3 years of age) were the hardest times for me.

I've recently had counseling and it helped me enormously. I would recommend it because it helps, if only, to be listened to and have some one anonymous give you time to speak without feeling judged.

I got my counseling very quickly on the NHS after visiting my GP.

Good luck. You are not bad or unusual in feeling these things. And keep posting.

I've nothing much to add to augustus which hasn't already been said re counselling, because the isolation and anguish you are feeling is felt by everyone in some degree at some time, but if this is as bad as it seems you do need help.

We were friendly with another mum whose DS had SD CP and was relatively mild. He had a cognitive test at around 2 and was expected to build with bricks! He scored about 8 months younger and his mother was devestated, even though it was clear to us his IQ was the same as his NT twin sister! DGS cant control his hands enough for bricks even now so DD decided no IQ test. YOU know your own childs cognitive level is normal, don't listen to them.

This is going to be my last post on this subject then I will namechange again - and probably drop off line for a while. I hear what you all say about counselling and will go back around that block and see whether I can find anywhere to get help for me. Overall I do feel that is what is lacking most in the current system I have. Help for me.

I don't have many real friends and those I do I have found it difficult with when they have similar aged children. I get fed up with the comments (favourites in the last week are "is he normal" along with a couple of people resenting the extra hours funding DS gets, as well as his DLA.) so I have deliberately backed away from RL a bit. I started to reach back out again before this current set of set backs so maybe I will dust myself off and keep trying.

Inhibernation you mentioend my DH. As you probably know who I am, or at least one of my other MN names you may also know his mother died recently, and he has had a worse year than me. He was in denial about CP, (not any longer but we were in different places for a while) and then firefighting with his mothers health and now her estate etc. I think there is only so much crap anyone can deal with and in the scale of things that was crap (but the last in alongish line of crap- his step dad died very shortly after DS was born so the crap has just keep coming). That is not to say he is not supportive, he is but I am the emotional one, he is very stoic most of the time. I know he has similar thoughts to me he possibly said them more than I have. He has been fantastic this weekend. He also spoke to my sister (he has no family of his own now) at length and they agreed that the rest of my family were emotionally rubbish - which they are. But I love my DH dearly and I wouldn't have him any other way. We just can't always cling on in the same way at the same time.

We went to see some neighbours who have a child with CP, that helped. They made me feel I should challenge the NHS more. I struggle with that as I am a combative person but feel I have to turn it off when I am with the professionals, I challenge but I am always polite. My DH says I always come over as tense though and sometimes my politness is icy. Maybe that's the edge you detect. In my defence I litigate for a living so it can be hard to turn that off and maybe I don't always succeed. My friends and family and to some extent here do however make me think very strongly that I should fight more not less. I always feel you havemore fight in me that I do.

sneezecake for what its worth my DS can build with bricks. And every time I have trusted my instinct on anything I have been right, I just feel the NHS are out to question that instinct day in day out.

Also for what its worth and to anyone else who reads this at any point my DH has also now spent some time looking into the research and statistics and discussing this issue on line with the academic who did the test - which he is well placed to do for certain reasons, and if anyone else is reading this the conclusions drawn is that nothing is predictive, unless the raw scores are more than 3 standard deviations from the norm. Which DS isn't even in his gross motor skills. So in that way I feel vindicated a bit.

I do sometimes want to tell the NHS that they should realise what it is that they do to parents when they send information blind like this, as it is only because of who my DH is and how he is that he is actually in a position to interpret the data (and even then that was after reading a lot of academic medical journals) and we have had a lot of heartache in the last 48 hours which could easily have been avoided. I know that DS will always have CP, that he will always be different, and I am sad about that, but what got to me was the thought that as well as the physical issues he would have cognitive ones and I struggled to see how he could fit into the society we live in. I don't care what he does, I just want him to have some kind of future, and I felt the NHS had taken that away again,just like the day they said he's got CP, don't google it, but we'll see you in a couple of weeks. That's what i feel is lacking common courteousy, and explanation which is better than google, and the respect to treat me and my family like human beings with emotions and needs rather than just a lable or a score.

I also feel very strongly that is ok to question whether resucitation is always right, as a society we believe we make progress but that doesn't always mean that it shouldn't be questioned or challenged. I know another parent who has a son who has complex health issues but presents as much less disabled than DS who believe her child should have been allowed to die at birth. I am not saying that the decisions taken are right or wrong, and I really don't want to offend anyone who would make a different decision or draw a line at a different place. I do love my son, but that does not mean I might not wish that things were different. I just had a couple of days where I felt strongly that I needed to say the unspeakable and have a metaphorical scream.

Augustus I'm glad you have said what you feel you needed to say, and I hope it has given you some relief from the anguish this report and the recent family losses you have gone through. This is a forum where as far as I am concerned you are anonymous and can get this all off your chest. I spoke to my DD today about your post and she said that when she had been told, when DGS was 7 months, he had CP, and again a couple of weeks later, when the physio had confirmed the diagnosis (she had been in denial til then) that she felt just as you do now. I was shocked as DD had never voiced this, but she said it was more the shock of the diagnosis after feeling that he had escaped his terrible birth unscathed.

She had some counselling which helped, but is absolutely fine with it all now. Hate CP (of course) but could not love or want her lovely son more. The reason I think she reacted that way was the birth was traumatic and DGS not expected to live - (fitting) EMCS. 4 months of 24/7 colic. Difficulty feeding and sleeping. Vacant episodes at 6 months (luckily outgrown now). Then the dx at 7 months. One emotional shock after another. I think this is what you are experiencing and it is something that you wont believe will pass, but I know will. Rant away, say what you feel, dont apologise for your feelings, dont feel guilty, its something everyone goes through and comes out the other side. You love your DS and thats what will see you through this. I would only be concerned if you said you didnt, ignore what the 'experts' say, trust your instincts.

As to the rights and wrongs of resuscitation, of course parents should be given the right to say, but as a TV prog last year showed, even the most prem babies (24 weeks) were resuscitated and parents, despite the enormously high odds of disability (over 90%?) wanted everything done to save their babies. I personally would not, but who knows what you feel in their position? Immediately after birth there is never the time to ask parents what their wishes are in cases like DDs (placental abruption). In some scandinavian countries they make no attempt to resuscitate 24 weekers and leave them to die because they know the life quality would likely be poor.

Grrr I posted a long reply and it all went. Bloody iphone.

Augustus, firstly I'd like to say how pleased I am that you now have good reason to question the validity of the data and analysis that you were given. Agree with what you say about the importance of HCPs being mindful of how they pass on info - as it is clearly devastating when they don't.

I'm sorry to hear of your husband's losses and glad that your relationship is good. It seems like comforting friendships are missing and I'm not surprised you are wary with comments like the ones you've had. I would be too.

I'm sorry if it seemed like I was judging you when I spoke of an "edge". I wasn't - just wondered if it was a sign of you trying to contain your emotion. Can relate to that you see. I understand why you would want to not appear difficult to your son's caregivers but from personal experience if you have an enquiring mind and your mind works overtime after appointments perhaps it is better to say what you think at the time. Otherwise the sense of isolation and detachment worsens imo. Plus you are his mum. No one knows him as well as you. Your intuition is important and should never be ignored by others.

I have never wished for dd to have died but I do not judge you for feeling this way. But I hope that with support your opinion shifts so that you can enjoy a more happy life - all of you.

Augustus, thank you for your posts. I totally relate to what you are saying, and I hope you can get some RL support. I used to wonder what I would have felt if dd had died at birth, and I truly believe that I would have been devastated, but nowhere near as devasted as I have been over the last ten years, but I would not have known that the devastation could have been worse, if you see what I mean.
Challenge your ds's doctors and other professionals. I live in the US now and it took me a while to get into the local mindset that doctors are human beings who have a finite knowledge. I questioned a suggestion, and was taken seriously - the doctor listened and agreed that her original suggested course of treatment was wrong.
Testing - my dd was tested at pre-school, and the scores were rubbish - flawed tests which rely on physical capabilities to test cognition - totally meaningless. But of course, I took the low scores to heart. She's been doing some standardised testing at school a few months ago - I'm hoping the results are better than last year as now she is able to use her eye gaze device to do tests.

Someone was asking about botox upthread - my dd had a particularly bad reaction which I have posted about elsewhere. Pm me if you want more details.
DD is off to camp next week, and very excitedly packed her suitcase today. Well that's my perspective. She sat in her bumbo and threw socks in the general direction of the open bag, while I labelled her shorts and t shirts. Its a camp only for kids with cp, age 6 to 14, and they are cared for with a 1 to 1 teenage buddy. The camp is at a purpose built centre which is totally accessible so she can be wheeled everywhere even into the pool if necessary. Going to camp is such a US thing I think - most of her school friends spend a week or so away at some kind of camp - our school holidays are 11 weeks long, so I think that has something to do with it. The downside is that it is so hot - 41oC today - but she will swim, go horseriding, fishing canoeing etc :)

Bumping for disguisedeb.

Will pop back in a wee while as I've missed loads, but just wanted to say I didn't have counselling until dd2 was almost 6, and essentially by that point it wasn't a choice, it was just something that I needed to do to be able to get on, as I was unravelling. But contextually, I'll have a read x

Went - dd2 is doing day camps. she has hiking, mountain biking, swimming, tennis (don't even go there, I'm baffled) and golf. (golf, I ask you.) but we're revving up for Canada day. School finishes today!

I see I've also missed loads, will read through and catch up.

I'd love DS to go to a camp like the one you describe, I've been looking for something similar over here but there is nothing. I am seriously thinking about setting one up but have no idea where to start or even if there is anyone else interested in it apart from me!

Mad - I'm just recovering from a 2-week day camp - dd got it into her head that she wanted to be just like dd2 and go to an acting camp... so the teacher asked if I would accompany her, every day from 8.45 until 12, with the last day a full day's rehearsal and 2 shows at night. Originally she was going to go on stage in her gait trainer, but it wouldn't fit through the tiny back stage area, so we carried her on - dd2 being a trooper and doing the shows with her. I had to sit with her backstage in the dark in a cupboard between scenes! I may be correct in assuming she stole the show :)
Seriously, tennis? Mountain biking?. School has already been finished for a month now here. (Already!) Heading to the Uk in 11 days time.
Hairy - I wonder how you could set something like this up in the UK? As I mentioned, the camp facility is a purpose built site, and is rented out to charities each week during the summer to host camps. The rest of the year it is used by other groups, sometimes just groups of adults. The staff are from our local cp organisation (like Scope), plus 2 doctors from Texas Childrens' Hospital, a nurse, and enough teenage volunteers for 1 on1 for each child. Then they get local physical therapists to come and facilitate swimming, etc, whatever their speciality is. Do you think it is something that a national organisation would try and host - like Duke of Edinburgh scheme or girl scouting? I wonder if there are any centres like an outward bound centre who could donate a weekend to a group of kids?

I wonder if PGL would be interested?

Ours have dance camp at the end of July. The teacher has been v lovely and has Been having anxious nights trying to work out how she can fit into the acro class....

Gosh, I lost this thread for a LONG time! DD is getting a Whizzybug funded by charity which we pick up some time next month. Hooray! She tried one at Kidz South and loved it (and managed not to run anyone over!) so I'm really excited.

She is fairly mildly affected (spastic diplegia, ex-prem) but we are considering SDR - if she is suitable, it seems to me that it would be equivalent to permanent Botox which she has had once and had a good effect for her. She started walking unaided at 2y2m - 3 days before her diagnosis! She never had a walker - cruised/crawled until she walked.

We are incredibly lucky as one of her friends at the local SN swimming group also has SD and is similarly unaffected cognitively. She has a walker, and cannot walk unaided, but is just 2 months older than DD and it's lovely that they are similar.

Despite her mild CP I still find it hard to cope at times.

Galena - I think mild CP brings it's own set of worries and stresses which are quite different. I feel guilty worrying about many things when I know relative to others they are nothing. It's the constant comparison with NT peers that is hardest for me to deal with and the questions she is starting to ask about why she is different from her friends. School Sports day was hard..

Gosh is taking me ages to read back through this thread - I've missed loads..

Galena. DGS also getting wizzybug at the end of august ish! Managed to run over everyones toes at the trial, but loved it. They are great fun for kids. Also just got a trike and he loves it, its only the shite weather thats stopping him being on it every day, that and the chickenpox!

No matter how mild or severe the disability you compare to NT kids all the time. You just cant help or avoid it

DGS is moderately affected with a mixed picture CP (that means he is more complicated and rare). Officially told that by the neurologist who assessed him for botox last week (not needed at present) and puts paid to the comm paed who insists he is spastic quad. DD and I have known for years he is mixed! What do we know???

lol. we went for repeat mri at 4 to put paid to the ridiculous spastic quad tag. the comm paed at the time was completely useless and insisted she couldn't change a dx given years before, despite the fact it was quite blatantly incorrect (or at least no longer reflected the current clinical picture). i even called scope in a strop. neurologists are far more realistic. we had a proper neuro debrief after the second mri. she was lovely, and made us fully aware that from the state of dd2's brain, she hadn't been expecting her to walk in (albeit with support) and have a conversation with her.

Hi Hairy - I would be very interested in a summercamp thing too :)

We've never had an MRI - but DD is pretty obviously affected in a typical SD way!

As regards summer camp, have you investigated the Calvert Trust? We have never been to Calvert Trust itself, and I'm not sure if there is a minimum age, but have twice stayed in a cottage very close to the Exmoor one and they have fantastic facilities for even severely disabled children/young people. In fact - in one of the recent 'Something Special' episodes, they were doing rockclimbing, carriage driving and wheelchair abseiling - that was filmed at Wistlandpound. I know they take families and groups (I'll investigate minimum ages, access for non-disabled siblings and costs, if you want and it's something we could look at as a group in the future.)

Meant to add, I had a bit of a chuckle today - we bought Wii Fit Plus today and I was trying it out. DD wanted to try so I set her up a Mii and she tried it. When she did the 'balance test' it said afterwards 'Your balance seems very poor, do you trip over often when walking?' I laughed a lot!

Really interesting re calvert

Thanks for bumping this Madwoman

Newbie here, ds3 aged 4 diagnosed with hemiplegia last Monday after going round the houses with various consultants etc... Last orthopaedic surgeon had just said that his walking would get better with peer pressure I know hemiplegia is only mild but still a shock. Just got the MRI appointment through for Friday 13th July, great date eh? Any support gratefully appreciated.It's a quick appointment , I was expecting a longer wait. How long do you usually have to wait for results?

Not been around for a while, hope everyone is doing ok especially young mr hairy mclary..... Love the wii fit story Galena...
a positive tale to tell(but will defo out me to anyone local) but my dd - yes the one with cp has just returned from a wonderful school trip (so what i hear you all say) but the trip was to France! and she loved it....
oh but it has highlighted the differences to having a 'nt' child as we had soooooo
much spare time when we would normally be doing things for dd, but I must admit to having the feeling of ' a kid on christmas eve' on the day she was due home and was positively excited when we received the nearly home(an hour away) phone call.
Has anyone heard of Bendrigg Lodge in Cumbria? that is a specialist centre with outdoor pursuits for people/children with disabilities and can be hired out to groups too
well off to continue with the 'mountain' of ironing

Hi deb!

Couple of weeks, usually, but quite often they like to do it face to face, so at next appointment. I would ask if poss for neuro debrief, though? They are often so much more knowledgeable than comm paeds...

Hello deb. Hope the MRI goes ok, its not a bad test and most kids are ok with oral sedation. The diagnosis always comes as a shock even when you expect it, but hemiplegia is usually not too bad for the child and there is a support group called Hemihelp, who have DVDs etc with exercises etc.

Also have more faith in neurology specialists, so take a list of questions with you as your mind always goes blank!