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.

We've just done it, we've got a cerebra sledge on order - yippee! So the race is on, will the sledge arrive before the snow does….?

Thanks pumpkin iv never been clued up on these types of things :)

Hi! Made it at last... Bit early for but think I can squeeze in a ! Glad I found his site and thanks for the bump of this thread! I ordered the book that was recommended and finding it interesting so far. Just got turned down for DLA. Suspect I need more support to fill it in correctly - there are some drop in's near where I live so will go there to get someone else to take a look... Sorry I can't give any advice about buggies, still using my dd1's which is 6 years old and my dd2 is only a tiny thing so is using it happily at the moment...

You need the cerebra guide for filling the DLA form to take with you. Also it needs to be the worse day you outline and bear in mind the amount of extra work and care compared to a normally developing child of the same age.

Hi I have a query with regards to botox injections. We are seeing an Orthopaedic Consultant in a couple of weeks privately after being told the nhs waiting list was 17 weeks!! We are interested in getting botox injections for our dd, 27 months old, not walking with diplegia.
Does anyone know if we are accepted how long approx we would have to wait to get procedure done? Also approx how long affects would last. Also if we got her walking in this window of opportunity then would this mean she would continue to be able to walk or could she revert back again to crawling? Thanks Albaba.

Hi I have a query with regards to botox injections. We are seeing an Orthopaedic Consultant in a couple of weeks privately after being told the nhs waiting list was 17 weeks!! We are interested in getting botox injections for our dd, 27 months old, not walking with diplegia.
Does anyone know if we are accepted how long approx we would have to wait to get procedure done? Also approx how long affects would last. Also if we got her walking in this window of opportunity then would this mean she would continue to be able to walk or could she revert back again to crawling? Thanks Albaba.

Albaba I'm sorry I can't answer your questions on botox as my dd is only coming on 10 mo. I just didn't want to leave you unanswered. I'm sure one of the mums with experience of botox will be along. I'm sure at the start of this thread someone is talking about how they swear by the botox.

No experience of Botox here but other kiddies have done very well on it. I believe it takes a week or two to kick in and that's when intensive physio should be in place for stretching and walking. It lasts around 3 months then wears off but the expectation is that the skills learned when the muscle was more flexible will be retained.

You probably knew all that already

Sneezecake is right.

How long to wait for an appointment depends, there is no hard and fast answer but the physio is important and that is what you have to get in place first along with any other rehab - plaster casts etc. If you can't get that on the NHS and can get it privately fine but if you are looking at doing everything privately the botox is just one part of the process. So ask about all of that, and ask you current physio what they think.

Which muscles are you talking about? Do you know yet?

In respect of how long the effects last it depends again, different children react differntly. We had a noticeable affect with DS 24 hours later when he was little. Then did different muscles and nothing really.

It really works for about 6-12 weeks and that is your window to imporve function, after that it may continue or it may not.

Also I don't know enough about your DD but I do swear by botox, but it is not a magic wand. DS still can't walk! He did improve noticeably post botox with regard to his function, gait etc but not learn to walk. He didn't then go backwards again but as he grows we have noticed his muscles tighten again.

QUESTION. NOT IMPORTANT ENOUGH TO START A NEW THREAD

DGS s piedro stability boots have been outgrown very quickly (for once - they used to last a year!) and are too painful to wear at school (he's 5). Mainly because of the extending pushing his strapped down feet into the toecap. A new pair have been ordered but will take a week or so.

He also has AFO s but doesn't wear them for school as he can't walk in his kidwalk or even stand in them. They fit well etc it's just he hates them. DD bought a cheapish pair of trainers to go over the splints to see if he would tolerate them. He didn't!

So nothing shoe wise to wear to school so DD had to put these too big trainers on (or piedro sandals which she thought would be too cold)

Anyway he walks in his kidwalk out to the car and to our amazement and despite these 2 sizes too big cheapy trainers and going on the ball of his foot (usual for him) he walked really well and even took off for the first time pulling the kidwalk on his own!!!

Do you think its because these trainers are really light and piedros are heavy and clumpy? As they are only £14 we will get a properly fitted pair just to see what happens!

Hi sneezecakesmum. I lurk on this page as my ds has mild CP. we were given piedro boots when we had dx. He wore them but in the summer I put him in high top trainers - we then saw a splint specialist who actually said the trainers were better for him as they were lighter so he could walk better. They advised us that as long as ds has boots that support his ankle we don't need to have piedros. So my thought is yes, that could be the reason. My ds is very very mild but I would think it would apply. Hope this helps.

Hi there. I haven't posted for ages but need your advice now.
My dd is now 5 and only fairly mildly affected by spastic diplegia. She has a physio and also an occupational therapist but currently only sees her physio roughly once every two or three months as she is doing so well.
Dd has done swimming lessons since she was one. This, for me, has always been essential and just as important to her physical well-being as the physiotherapy. She does ballet as well but I believe that she benefits from the swimming even more.
Since the beginning of December she has not been wanting to go. I don't understand it, because up to then she really enjoyed it. Nothing has happened, she just doesn't want to go any more and gets upset as soon as I pick her up from school and she realizes that it's time for swimming.
Today, her pleading and crying was even more intense than before Xmas and I eventually gave in (after suggesting a sticker chart which she got very excited about, she stipulated the number of stickers she should get and also the price, which was a dressing-up outfit she'd wanted for a while; a few minutes later, however, she was back to crying that she just didn't want to go) and took her to the park and library instead.
I feel that I shouldn't force her to do it if she really does not want to go any more. But at the same time I feel sick at the thought of this so important type of exercise being missing from her life! I also really really absolutely want to her to learn to swim as I think it is such an important skill to have. I don't know what to do about this. I don't want to force her to stick with it but would feel awful if she didn't go any more!

What would YOU do???

Thanks jane, that is very helpful. DGS is dyskinetic so no real tightness anywhere just fluctuating tone....ironing board to jellyfish in a flash! I will suggest to DD high top trainers that go over the ankle as they are all light. Tbh the piedros are fab but don't stop the toe walking or the scissoring when he makes any effort. Relaxed he has full range of movement but of course you can't walk if you are relaxed! It won't do any harm for a week or two as his type of CP doesn't get contractures.

Although DGSs CP is on the high side of moderate and all 4 limbs, speech and everything, taken individually, legs, arms, weak trunk and neck, etc they would be considered mild but all together pretty severe! He is a peculiar but cute kid

Jokat. I would say forcing DD to go swimming now would be counter productive, you can take a child horse to water and all that! It may be that she is cold when getting changed or when she comes out or tired after school? I must confess swimming in winter, even in a warm pool, is a bit of a chore. Have you thought of riding? DGS goes in the afternoon as it's part of his therapy, RDA. If your sessions are real hydrotherapy they allow for time off from school if tiredness is a factor. I would look for a beneficial alternative like riding and try to reintroduce in the spring. Would she be happier if a school friend went with her to make it more fun? Coercion (even in the nicest way) often leads to aversion .

Albaba* DD has several rounds of Botox. To be honest it depends on what your DDs issues are. Botox is a powerful neuro toxin that reduces the spastic effect on the muscles allowing the tendons to be stretched during the time the Botox is affecting the muscles, hopefully allowing the tendons to be lengthened by the stretching to keep up with the growing child and hopefully reducing the need for orthopaedic surgery in the future. Over the years had it applied to her calves, hamstrings and inner thighs. It takes 2-10 days to show its effects. Often children have flu like symptoms approx 24-48 hrs after application. Some research shows that the Botox damages the muscles it is applied to making them weaker in the long wrong. Each time DD had it we saw benefits, her legs were straighter, she could get her heels down and scissoring was reduced but after 3-6 months it wears off the the spasticity returns. Botox it's self won't help your DD to walk but it make make therapy and stretching easier. Hope that makes sense

sneezcake I wouldn't worry too much about getting trainer that fit properly etc I would let him go for it in whatever he can!!!! It must be so exciting :) Let him have some fun. He is unlikely to be on his feet for long enough to do lasting damage and hopefully once he gets the hang of it you will be able to work on doing it in his piedros or AFOs.

jokat my DD is about the same age as yours and has swam since she was 10 weeks old. She has lessons twice a week as like you I think it is such an important form of exercise but in your case I would give her a couple of months off. Can you go swimming for fun? Maybe try out something new, horse riding? Gymnastics? Cycling? Everyone gets bored of the same routine. Hopefully if you don't force it she will want to go back of her own accord.

X cross with sneeze :)

Albaba sorry, but we don't have any experience of botox either. Good luck with it though, I've only heard good things.

sneezecakesmum do his peidro's normally keep his heel down? If so, he might be speeding off in his trainers because he can tip toe in them. I would agree that the lighter weight and greater flexibility/softness of sole and upper is probably also contributing - our physio said when we first got piedro's, that DD's walking would be made more difficult initially as they were so heavy and clumpy. That must have been a great feeling seeing him taking off with his kid walker!

sorry, that took me ages to write! Superceded by other posts .

I agree Sneezecakesmum that it should be fine for a few weeks till his new piedro's come in. Ignore my 'heel down' question - you've answered it . Sorry for being a slow typer

jokat I agree with others, I be reluctant to push her against her will. Has she said why she doesn't want to go - I'm thinking of bullying or a mean/thoughtless comment that's now put her off? What about asking if she'd go swimming with mum/dad/friend to still get her in the pool for exercise and continue with some 'homeschooling' swimming instruction?

Failing that, I'd ask her if there's another activity she'd rather do. My 5 YO (NT) loves gymnastics and our local club is an inclusive 'Gymnastics for all'.

Our 5YO goes to swimming lessons because she wants to 'qualify' for the rapid ride at Center Parcs on our next visit . DH has told her what swimming level she needs to get before he is comfortable taking her down the rapids. It's more carrot, less stick.

I used to be a lurker . Now I can't keep off this thread!

'Night everyone x

Thanks everyone for the comments. Yes it makes sense that he can gallop around in lighter shoes for short periods. Our fear was distorting the bones but it's such a brief time and being in piedros too when they arrive should keep things on track. I don't think toe walking is such a big thing for him because he doesn't get permanent tightening as in spasticity because of the fluctuation in tone, it's weird!

As you say transfer of skills and all that, he may be able to walk better in the piedros. Never in the dreaded 'foes' though

Night all. I am full cold and waiting for the drugs night nurse to kick in so I can get some SLEEP.....

Albaba - we're seeing ortho next week about Botox so I'll let you know how we get on. In many areas Botox isn't done until they're 3 but after being told she couldn't have it we got x-ray results showing her hips are coming out so she can have it sooner.
She's also 27 months and tomorrow is her second 2nd birthday. I'm a terrible mother and she has 2 birthdays a year.

Everyday - what's the betting we don't get any snow this year? If not I'll probably find a grass hill to push her down!!
Told you I'm a bad mum!!

woop-woop!! We have a sledge! All put together and 2 over-excited kids were climbing all over it today. Come on the snow (or I'll be there with Pumpkin on that grass hill, oh yes).

Pumpkinpie11 Botox dosage is done by wieght (if more than 1 site are being treated the dose is split) So they need to wait until the child is heavy enough to be able to give a big enough dose of Botox for it to work. Sorry to hear about hips though.

Kaffiene that's interesting. I mentioned to HV my concerns about weight loss on having a general but she didn't share my concerns. My LO has been hovering around 10kg for 9 months now but nobody (except me) seems bothered.

What options would there be for her hips then if Botox isn't an option?

Everyday - mine is still in the box because the Cerebra guys told me it would be better if I could find somebody else to help me assemble it. I haven't got anyone & match.com is full of guys who don't know what an apostrophe is so I gave up. Was it difficult to put together?

I like building stuff (a mechano kid at heart) so I wouldn't let DH have a look in . Yes it would be easier to do with 2, but I did it on my own. It was fairly straightforward and I used the sofa to help support the sledge on it's side.

Top tip: read through all the instructions before you start rather than taking them in stages.

Step 1 stretches the truth: 'take all collars and push one into each hole'. There are 18 collars and 22 holes (11 holes on each side of the sledge). Glance forward to step 4: it shows position of 2 holes on each side of the sledge (4 holes in total) which are not to have bolts in. These are the 4 that you don't put the collars in.

That will all make sense when you check all the pieces and have a read of the instruction sheet. Other than that, an enjoyable kit to put together .