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.

Oh and apply for dla if you can face it. You can get it for little ones, and you may well find the money comes in useful for things in the future.

Muchadoaboutsomething, thanks for replying. He's been diagnosed with spastic cerebral palsy affecting all 4 limbs. He did have a bleed both sides but the worse was his right side.
He's been seeing physio for about 1 year and moved to group therapy approx 5 months ago. We are really lucky as he's also under an occupational therapist and a speech language therapist. It was the ST who put a referral into Portage and we have an initial meeting next week. We've also got the forms for DLA but my god you need a degree to fill it in!
Thanks for the book recommendation I'm gunna look for it on Amazon. It's just feels like I'm grieving for my boy. I know he's not changed since the diagnosis but its like I'm saying goodby to the future we hoped he would have and have to start looking towards an uncertain future.

Claudia. I really feel for you. It is my grandson who is affected, but i have been very involved from day one and he is starting school age 5 this september, so its been a really long haul!

You are asking what every single parent of a SN child asks, what is in the future. We always said it didnt matter (it did of course!) what he was like but we just wanted to know so we could plan and accept it more easily.

We now realise all you can do is the best you can do. Unfortunately these affected children will not do well unless every day activity is part of their 'therapy'. Its not as difficult as it sounds and the book I recommended tells you how to incorporate therapy activities into everyday activity. Of course you still need to be an ordinary family and have days off and days out, but realistically most CP children need to be taught how to move in the most naturalistic way as it just doesnt come naturally to them. In the early days especially (and throughout life) the brain is 'plastic' and can find ways to work around damaged areas, but this rarely happens without lots of input for most children. But it can happen.

Never give up hope for the best for your child. You need realistic optomism if you have a SN child. So many of these affected children surpass all expectations and there are plenty of therapies and medications that will help.

Your baby is smiling and happy and responsive which are all excellent starting points and very hopeful. DGS is starting MS primary with lots of input, despite being on the high side of moderate severity and his physio said last week she feels at some point he will be independent. Not walking independently but with aids and we still look for improvements in him and never give up hope. DGS has a 5 month old baby brother who does it all with ease but they seem to love each other and we will train BB to duff anyone who bullies DGS up who is already encouraging DGS to hand him his toys.

As for comparing with other children...try not to - that way lies madness!

Sneezecake, thank you for the recommendation!! I do love a book, so I will buy it pronto!
Do you think it is a good sign that she is twisting and getting to her knees?? It just I am worried I am creating an extensor pattern way of doing it by allowing her to continue without getting ok from physio?

I also feel that she is rolling with stiffer legs too rather than bending then which she can and used to do, but then I don't know if I am looking into things too deeply.

Vampire, hello ! My dd is affected in all 4 limbs too. I understand evrything you say. I frequently get pangs of fear and then ashamed to say jealously when I see how much effort my girl uses compared to normal babies who make it look so easy and natural. And think why can't we have that!?

Summer & Claudia - the beginning of the journey is so so hard. You're still grieving for the child you thought you would have.........the "normal" child. It's a bereavement like any other and processing it takes time. However, the milestones your child achieves, the way in which they deal with their disability and the courage and determination you will see will touch you in ways I cannot describe. And having to fight for your child to get them what they need will take you out of your comfort zone but in so doing will help you grow as a person and bring you into contact with lots of amazing people and show you that you possess qualities/talents you never knew you had. I say this from my own experience but also that of many parents I've met who have children with additional needs. You don't have to pretend its fine here (please don't!) but I wanted you to know there is always hope

Summer it is difficult to say without seeing a movement whether it is good or not. The book (our bible) goes into just that question. All I can say is if anything looks abnormal its usually best not to encourage it, but to encourage a more normal looking movement.

Twisting the torso is excellent as CP children have whats called 'paucity of movements' meaning a limited range of variation of movements..if that makes sense. Its taken me nearly 5 years of research, reading, talking and most of all observing to have some (but nowhere near enough) understanding of my DGSs type of CP, which is a more unusual type. Dyskinetic.

With damage more in the cortex of the brain its more likely to be the stiff tight type of CP, but CP 'evolves' over the first 2 years, and in my DGSs case up to 3 years of age. Some very tight babies become very floppy and vice versa. It is sooo frustrating!

wrt to rolling I would encourage your DD to roll with a bent leg, gently easing her hip over and keeping her head fairly central. You can rock her pelvis a few times to imprint the movement on her brain patterns. Look at youtube for normal baby rolling patterns as there is more than one and try to physically help her into those patterns. I believe quality of movement is as important as quantity.

There's a machine called an ijoy twist which simulates horse riding but the twist (rather than iride) works the lateral core. It's been good for dd but we worked on her front core a lot so she could progress to this one rather than the standard model - iride. For children who are less strong you can but saddles and reins to go with them. Not sure of minimum age but lots of 3 year olds using them. You can pick them up on eBay second hand. dd had very tight adductors. Horse riding/ijoy good for this. Still tight but not quite as tight. Dorsiflexion - try to stretch your little ones feet. As they get older get them to roll a rolling pin under their feet to encourage development of arches (too late for us as dd has very flat feet). Conductive education is worth a try. Also bobath physiotherapy. dd had private physio from very young and I think it made the world of difference. There are spastic quad children having SDR in America and I'm in touch with some of them. They report greater ease of movement and are working towards independent transfers. It's hard rehab but the parents feel its worth it for the gains they've seen.

To clarify: UK children with Quad SD having SDR in St Louis.

I've got an ijoy but DGS completely freaked on it!! It may work later, but meanwhile he loves his RDA and his giant old horse Ben Riding is brilliant.

He has a Kidwalk which is brilliant too. He walked beautifully in it last week, especially for his physio. Today and yesterday he extended every limb and walked like pinnochio!!! We were getting so stressed when I saw the glint in his eye and realised he was doing it on purpose. It stopped when we said you don't get to watch Thomas the tank engine if you mess about! Its his post exercise treat and he stays in the kidwalk inches from the screen screaming at all the train crashes!

Cheeky boy :) How funny!
Yes RDA is excellent.
Re equipment - good idea to try different things out before spending a lot of money.

Hi everyone, thank you for your replies, it does make me feel better knowing I can get my feelings out on here. Jack had an appointment with his physio this morning to devise an action plan and they are happy to give him some hydrotherapy. It'll only be 1 session but they will show us what to do so we can do it in the baths. He's also reaching and grabbing a lot better than he was so very happy with him.

Can I just ask parents whose kids have been to nursery/school etc, How did you manage Physio and nursery? Ds2 is 21 months old and I would like to send him to nursery for couple of mornings. Do the nursery staff carry out physiotherapy there or do your dc wait until they get home?

If they did carry out Physio, was private better or state in that respect?

Hi. My ds nursery do 2/3 sets of stretches a day. I do 1/2 at home. Both the NHS and private physio goes into nursery about 4 times a year to talk through and show the staff exercises, which are then put into the IEP.

Ds has a 1-1 so I trust them to do the physio, and actually find it a relief to delegate it. We then take ds out of nursery for actual physio sessions.

Thanks muchadoaboutnothing.

Or something rather.

Hi all, we just got a letter from dd paed. It says on the letter she has definate tightness/ high tone on her right arm. It says in the letter about right sided hemi and it being in the cp bracket. It totally threw me and I burst out crying. I don't know why I did as its all things I know already.
What does it mean. Is this a diagnosis letter? What happens now?
I feel all over the place today and I don't know why :(

Hi Melmo, I think seeing it in writing is really tough as it makes it real and formal. It's even worse when the doctors have not ifficially told you. I was the same, the doctors hadnt told us, yet there it was CP written in bold in a letter from the hospital. i was completely knocked for six even though I knew from very early on. Have a cry, have some chocolate, wine or both and tomorrow is another day when hopefully things will look a little bit brighter! Have you been offered physio, SALT etc??
With us nothing mch changed as we were already seeing physio and SALT.

Sneezecake - thanks for book suggestion. It has one through and is amazing! See what you mean when you say it's your bible. Think it'll be mine too.

Does anyone's little ones get frustrated?? The latest for mine is to grab her hair and screech. It's a but worrying. I hope it's a phase. Any suggestions in how to deal with it, I've tried telling her not to do it and distract her but the frustration is clear to see?

Hi SUMMER, we knew she might have cp when she left the hospital. We were always told ' might have' but aftera stroke and significant damage we always knew it would be the case so I really don't know why I got so upset. (Wish I could have a glass of wine but I have not found 1 I like!)Dd has had her physio since the hospital also SALT we met at hospital but not seen since as dd in only 5 1/2 months. Starting food soon but have been advised to give mush as she might have problems chewing and swallowing. She also has no teeth yet so wouldn't be able to chew anyway :)

This may sound really dumb but what do SALT do. Are they only to teach speech or other things. When we left hosp dd was appointed a diet and nutritionalist, who helps if dd has probs eating?

I know what you mean with frustration. Our dd is only 5 1/2 mo and gets so frustrated already. When playing, tummy time, stretches even when I have her sitting up to try and strengthen her back ( dd is not sitting yet)
I hope the frustration passes too but it looks like maybenot.

Hi, I've been on occasion part of previous threads. Dd1, RH hemi, microcephaly, 3.1yrs old now - CP caused by HIE at birth, cooled 72hours.

DD1 has just haf a growth spurt and is tight again, her right arm and shoulder are worst affected and although she has a full range of movement and moderate fine motor skills her gait can be thrown by her upper body. So. I've noticed that her R hand is often a different colour to her left hand. We see neuro again in a few weeks so I'll mention it but wondered if anyone had seen something similar?

dev9aug our DD had her physio go into nursery to suggest better posturing and stretches. The nursery staff incorporated the stretches into a mini yoga workout which all the children did together. Veey inclusive. When we wwnt to branwave and came back with a vast amount of ideas and tasks we went through it all with themand agreed what we would do and what they would do. We get some support from LEA in that every week DD gets five hours 1-2-1 support where she works on her IEP tasks, physio, communication and concentration. Nursery is the single best thing we could have done for DD although at times illnesses have landed her back in hospital.

Dev..... DGS went to nursery 5 mornings a week and his NHS physio went in every couple of weeks or so and so did OT less often to check the equipment. We don't have a private physio but go to Brainwave who give us lots of feedback and an exercise program. The nursery staff didn't do physio as such but were told the best way to handle him and of course they did lots of hand over hand work. It was more for socialising and cognitive work that nursery were good. DD and I are pretty clued up anyway and together do as much as DGS will tolerate after nursery especially following the Brainwave program.

Melmo nearly all children with hemi will walk, talk and live independent lives. Hang on to that thought. It's always a shock to get the official diagnosis and CP sounds so horribly scary, mainly because of society's reaction, or your perceived reaction. Hopefully things should swing into gear now and you will get all the support you need. It gets better and in a few days you will feel better i promise....been there so often!

Most children with cp get frustrated at times and do various antisocial things! It's very common with non verbal children and DGS gets cross and does his Popeye face and scratches. Since dgs2 came on the scene he screams and cries......it works for baby brother, and he also has started banging his head on the floor. Only very gently though and watching us out the corner of his eye waiting for the 'stop that!'. Some is bound to be attention seeking but most just frustration. Ignore it if you think it's the first, try distraction for the second or try to avoid situations where for instance the activity is physically too difficult and talk to the child after to explain things and say you understand.

Wrt SALT. they are involved early on for swallowing assessments. After that its speech and communication at all levels eg cognition, expressive and receptive language, communication devices etc. bit thin on the ground though.

Thanks sneezecakesmum

Hi there,

I haven't posted on here for a long time. But I have had a closer look at SDR recently and would like to know how on earth those of you who have had the op done have raised those thousands of pounds that you needed! I had a look at Henry's site and it stated you need around £40000 for the op, the trip etc, I don't have the faintest idea how we'd get hold of that kind of money?! And how long did it take you from the point where you started looking into it to your child being operated on?
My dd will be 5 this November and has mild spastic diplegia. She started walking independently at 1yr 10mths (1yr 7mths adjusted), can run (slightly odd gait), jump, ride a scooter and walk up and down stairs without holding on (though only at slow speed and with clenched fists). Since I first read about SDR on here, I always assumed she is too mild for this kind of operation, but I've recently been told by another mum with a sd child that that's not necessarily the case.
Now I wonder if I'm making a big mistake by not seriously contemplating this surgery for her. But at the same time I think she might be too old to start all the relevant procedures (doing the research, going on waiting lists for assessment of suitability, etc), the amount of money involved if having it done in St Louis is just mind gobbling and we don't have any savings. It is also not clear yet if she will ever need orthopaedic surgery, so we could end up putting her through SDR in order to avoid something (the other kind of surgery) that might never happen anyway! (although I am aware that that's by far not the only reason behind SDR) Also, the thought of putting her through such a massive operation, which surely must have some potentially terribly risks attached as well (doesn't it?), with a lot of time off school, I find very very daunting.
God, on one level I feel quite selfish for not looking at SDR as a realistic option for our dd (yet), but on another I'm just really not sure the benefits of SDR would be worth putting dd through it all.

What do you think you'd do if you were in my shoes?

If I were in your shoes I would probably leave it. But worry that wasn't the right thing to do. If I didn't do that I would start making enquiries and ask for a referral to GOSH/Leeds/Bristol and see what they say while telling myself that it was just a day I was giving up to look at it with the experts.

Your dd is not too old. My Paed is very reluctant to allow us to look at it for DS who is much younger until he is 6 ish. We are patiently ignoring her. But I would want to know more to make an informed decision to leave it.

We are seriously looking at it for DS but he is 3,6 and cannot walk without his walker. I can also write a cheque to cover the cost of treatment which of course I don't want to do but I do have the money. I also don't have any other children so can create the time if I have to.

what do you think you will regret more. Looking at it and worrying about it for weeks until you decide but knowing you gave it some thought, or waiting to see what DD may need a bit longer in the hope she won't need surgery at some stage.

Given you have posted I suspect you are going to have to look though, if only to know you did what you could at the time.

Jokat it's a tough decision. We went into it knowing the waiting list was huge but didn't realise it would take 2 years from referral to surgery date! I suppose at least I can't say I didn't have time to think about it. I think we're programmed to feel guilty so it's par for the course that what we we don't do will leave us fretting whether we've done the right thing. Your dd sounds mild. Does she have dynamic tone? What's her stamina like? The main reason we decided to opt for SDR is because we knew she would deteriorate as she gets older, would need lengthening and maybe hip surgery and would develop contractures. dd is also considered mild but no two CP children are the same so just because it's right for my child doesn't necessarily mean it is for your dd. The team in St Louis recommend early SDR and there's a paper on their SDR fb page about this. In the UK surgeons tend to think below the age of 8 is optimal but of course some children may have needed other surgery by then. As for raising funds........we started fundraising a couple of months ago or so and we've raised about 21k so it's certainly do-able!

SDR is performed in the UK too and a friend of ours had the operation on her little boy. I think he was around 7? It was very successful. I'm not sure if there are differences or what they are but I would certainly look for a consultation in this country just to give you an idea of whats involved.