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.

[Galena]

I must stop losing this thread!

Congratulations to both sneezecakesmum (and sneezecake, but I can't remember her NC!) and to alwayslate I hope DD one day gets the chance to be a flower girl. :)

Our big news - we've been accepted for SDR down in Bristol. Should be October/November time. She's just (on Tue) had more Botox, because we were keen to ensure she didn't lose any mobility between now and SDR. We were told the waiting list is 8/9 months from when the decision is made - which was end of Jan. It also has to be at least 6 months from Botox, so the timing has worked out really well. We've also found some horse riding for DD to go to - until she's five-ish they don't do lessons as such, but they do foot-led walks around the grounds, 30 minutes for £8. Can't be bad! It's all core-strengthening.

[2old2beamum]

Well done Galena hope all works out well.
Will update you all with DS's progress hopefully in July

[Galena]

Ooooh, I've just found DD some swimming lessons in a warm pool! And it's with someone who knows about CP! Woohoo!

[everydayaschoolday]

Congrats Sneezecake and sneezecakesmum - gorgeous baby photos . And lovely flowergirl news alwayslateforwork. I bet she'll love her 'fairytale' dress - aww...

I haven't been on for a while but I have updates . DD2 (nearly 2yo) has just had her diagnosis and apparently there is new terminology, so here goes: DD2 has asymmetric, bilateral spastic CP. So affects both sides but to different degrees (DD2 worse on the right).

We have a kaye walker on order and should arrive next week. Physio and OT really happy with her progress. Getting lots more use out of her right hand now, and she's doing really well with her doidy cup (although is still getting a bit soaked at times!) and attempts at self feeding.

And I have finally gained the courage (being silly, wish I had done this sooner - she was lovely on the phone) to call Bowen therapist today and we have our first appointment in 2 weeks. Can't thank this thread enough for Bowen recommendation - my physio has not heard of it.

Yey us!

[everydayaschoolday]

Hi Galena. Congrats on SDR acceptance and swimming lesson news. How did you find a CP-informed swimming instructor? I'd love to do this for DD2. Just through google? Foot-led horseriding is an excellent idea - hadn't thought of that.

I really need to read up on Scope, they might be able to give me a steer too for all these good ideas to try.

[Galena]

I contacted the local special school with warm pool and asked for details of any private swimming teachers that use their pool. She had her second ride today and loved it again. :)

[sneezecakesmum]

Thanks for the congratulation, I did nothing It was all sneezecake aka giddypants! Congrats to alwaysgirl on being a flower girl.

Well done Galena on the SDR fabulous news, nail biting but fabulous!

Interesting about new terminology. Physio at Brainwave has been saying it for years as DGS fits none of the official categories, apart from dyskinetic which just means abnormal tone....which all children with CP have duh!

Please keep us updated with the Bowen therapy though as it sounds interesting. Hope DD2 benefits from the therapy.

DGS (dyskinetic!) is on a trial of benzhexol and only week 3 of increasing doses (still a tiny dose) but his physio today said she noted a distinct improvement in hand function!!! He's not supposed to show anything till 15 weeks according to the research I've done. I thought it was just wishful thinking on my part. It is very little heard of (she hadnt heard of its use) and as theres precious little out there for dyskinetic kids I feel quite evangelical She also said she would order a Kidwalk for him He started horse riding at the RDA (baby steps there as at the horse he sat on (him that is!) not us as we are hard ) So all in all good here at Sneeze Hall.

[thereonthestair]

Galena, great news on sdr. Keep us posted.

Giddypants and sneezecakes mum congratulations. I can't imagine having another child and even if I could dh can't. So all credit to you.

Everyday I am aware of another child with bilateral cp locally. They had sdr in St. Louis very successfully.

We also do swimming in the local hydro pool, in a normal class but with birthlight who have lots of experience of teaching children with cp (and other sn). The local disabled children's swimming group also use the pool and I keep meaning to get in touch with them too.

[Kaffiene]

Everyday and Sneeze - My DD has had just about every spastic diagnosis going. Quadriplegia, tetra plegia, diplegia, diplegia with some arm involvement, asymetric bilateral and unilateral bilateral and another one something like reverse asymetric diaplegia.

Basically her legs are more affected than her arms, then to confuse people her left leg is more affected than her right. But her right arm is more affected than her left. She also has a very wobbley middle and tends to slouch more to the right. The "experts" are divided as to whether this is due to more or less tone on different sides if her trunk if that makes sense. Ie does she slouch because pulled down on that side or lack of tone?

At the end of the day the diagnosis doesn't affect the treatment... Physio, Physio, Physio :)

Sneeze - has he had an MRI, I might be wrong but I thought a dsykentic diagnosis was given when the basal ganglia is the area/ main area that shows damaged whereas spastic is usually PVL.

There - its annoying me, i know i know who you are but i cant remember ;)

It's ISW here by the way

[Dev9aug]

keffeine so what happens if your MRI comes back clear. ds2's legs are affected mainly and his MRI came back clear. Nobody has told us yet what kind of CP he has.

[alwayslateforwork]

Nah, dd2 was originally spastic quad, and she's basal ganglia damage. She's athetoid, but I guess would be given a fancy new name. (She has full body involvement, but it's worse on the right. But maybe she'd be called dyskinetic too, eh?!)

Dd2 still lists one way. They have to check her for scoliosis etc as it's very marked, but so far her back seems ok. She does have a slight leg length (hip height ;-) ) discrepancy, but this seems to be because of the lean, not as a result of it... (?)!

Galena, how exciting!

Dd2 rides as well - our spring session starts in a couple of weeks. I'm the president of the therapeutic riding association (am not at all horsey - I just organise and let the horsey types do their thang) so busy getting it set up again.

Dev - consultant or neuro can dx based on clinical presentation if they feel they have enough evidence.

[alwayslateforwork]

Sneeze, can you pm some detail or do a linky re the benzhexol? V interesting!

[Dev9aug]

Thanks alwayslateforwork, I guess as keffeiene mentioned the answer to whatever type of CP he has is physio physio, so we will just focus on that. I have spent over a year sorting out therapies/treatments for ds1 who has ASD and now I have finally sorted out the best package for him, its time to focus on ds2.

Apart from this website, is there any place where I can research various therapies etc used for CP?

[Kaffiene]

As far as I know damaged doesn't always show up on an MRI. Some people can have horrific damage and exhibit mild symptoms and vice versa and Always has just disproved my theory!

always you have reminded me to check DDs leg lengths. She did have 0.5cm difference and her calves had different circumferences. Not been checked since SDR.

dev Scope's page is a good starting piont www.scope.org.uk/help-and-information/therapies

[Dev9aug]

Thanks Keffiene.

[thereonthestair]

Hi. Can I ask any of you with older children how potty training went? Ds will sit on a special chair potty ok, but finds it boring. He also says that's because nothing happens when he sits there. My instinct is he is not ready but the nursery are keen to have him join in. I don't care if it is too soon,but worry I may just be being lazy because of everything else we ave going on.

[Galena]

We had a go at training last summer when DD was just over 3. She began to get some idea with wees - if we sat her on the potty every half hour or so. She never asked to go, and would look surprised when she wet herself. She also became very very constipated because she would hold on and hold on until she was having overflow accidents. Horrible.

We pulled right back on potty training and went back into pull ups. We concentrated on sorting out the constipation which we sorted with diet and routine around the New Year.

In Feb (aged 3.10) she was still in pull ups and quite poorly, but suddenly she said 'I need a wee' and went to the potty. The ONLY accident we've had since then is once when she was sitting on the floor playing and didn't have time to get herself up, over to the potty AND knickers down, so she sat on the potty without pulling down. So she weed through her knickers. She wees and poos on the potty without a problem now. And she also uses the toilet for wee, but not for poo yet.

Our paed explained that, because she's got tight muscles, it may well be that her sphincters are also tight, so she has to consciously relax before she can go.

[Kaffiene]

We tried potty training numerous time as she knew what toilets were for and used to ask to go but sit for ages without doing anything. It drove me mental as she used to do it when bored/ during Physio etc. From about 4 she started asking to do No2 on the toilet. Then at 4.5 we got a health field potty chair and it just clicked. Overnight from nappies to being reliably dry. I honestly don't think she could feel it before? Or was too uncomfortable/ scared to relax properly. I think it is quite common in kids with CP to go from nothing to fully trained overnight.

She is still in nappies overnight at 5, sometimes wakes for a pee but most of the time nappy is soaking. Night is different I think, due to a hormone, both DH and I were late in being night trained so not stressing especially as I would have to get up and help her ;)

[sneezecakesmum]

Well done little galena A major breakthrough! We are looking at getting a special toilet seat but the issue is going to be to get DGS to the toilet, trousers and trainer pants down while he wobbles, falls, goes rigid, goes floppy Not yet with new baby though so when the better weather starts and we have shorts

DGS only had damage to his basal ganglia noted (patchy loss of signal) so we never understood or agreed with the SQ dx! He only does athetoid fingers occasionally, no slow uncontrollable writhing dystonic movements, no tremor, no spasticity - so doesnt fit any of the descriptions for CP so maybe he's not got it. He sounds similar to alwayslates DD but different lol!

Alwayslate....Benzhexol (Trihexyphenidyl) is a acetylcholine neurotransmitter blocker. From what I gather the basal ganglia prevents messages to move (damps them down) going to all the other muscles in the body (or some) and leaves the pathway open for the chosen movement to be made eg raising one arm while sitting. DGS would arch back and topple trying to do this. This is the research I read
www.sepeap.org/archivos/pdf/11608.pdf

It seems a very safe drug and maybe???

[survivingspring]

Hi again all and any newbies! Haven't checked this for a while..

WRT potty training my dd followed similar pattern to Galena's and went from nappies to fully trained by day very fast when she was 3 yrs and at night from about 4.5 yrs.

We still, at nearly 6 can't crack doing a poo in the toilet - we still have to use a nappy but she just can't let go into the loo. Incontinence service says not to worry but it does make life difficult!

Interested in new CP terminology as dd has never fitted one particular description either. Mostly low toned especially trunk but athetoid fingers like sneeze's dgs!

[sneezecakesmum]

Hi. In a rush so just to say look into the medication. no age restrictions and even if it just gives a small amount of improvement to fine motor its worth it. minimal side effects so i think its a safe med and there is b all out there for dyskinetic children. We are bowled over by the improvement - not massive at the mo but noticeable

[alwayslateforwork]

Mm interesting. Will ask next time we see consultant.

I second scope by the way. As the main cp charity, it was always my go-to site when dd2 was little. They also have great newsletters and info for early years, and run workshops and seminars for parents and early years practitioners about all sorts of cp related stuff. Their forum can be a bit quiet - I haven't been on there for ages, but I like it because as well as having an early years board, you can also have a look around at things that might impact later - people talking about their work experiences with cp, aging, driving, whatever. But do sign up for their early years e-mails.

Dd2 toilet trained practically overnight. She was the earliest by years of my three, which was frankly amazing, given that we were expecting it to be either extraordinarily hard or impossible. We had been warned that it was possible she would be doubly incontinent. You just never know until you give it a go.

We had a toilet seat with a full chest harness as well, but after a year or so of us having to hold her in place, she could manage with just a toilet surround, grab rails (and obv a smaller toilet seat). Speak to your OT about toileting equipment, and make sure you have everything you could possibly need before you start!

She doesn't do classic athetoid writhing, but has athetoid fingers, toes, and occasional facial stuff.

[choggers]

Hello
i was wondering if anyone could offer some support and advise really, is 7 months old was diginoised with CP all four limbs spastric, this was due to meningtis at day 3 of life and caused a bleed in the brain due to delay in being detected. i have looked at a few forums and i feel like everyone knows so much more about treatments avaible harry is currently haven physio i thought SDR would mabey somthing that would help him but from what i have read as he is all four limbs and due to him haven had meningitis they wont except him but again i am at a lose as to why? im just struggleing with know haven the answers to what is best for myson! is this just as i am new to this or is there somthing i am missing, a few things i have read have said dont just stick to what the NHS is giving you........but where else can i go?

mum at a bit of a loss xxx

[thereonthestair]

Hello choggers. Welcome.

7 months is still really little. At that stage physio, physio and physio can make a lot of difference. As for sdr where 4 limbs are affected it may not be appropriate, but again it is probably too soon to say. A lot will depend on how strong your ds core is, does he eventually get up and walk (including with a walker). Even if he does sdr may not be suitable but even if sdr is appropriate it may well not be a magic wand. I don't think it will be for ds, although I am looking at it but ds won't be suitable for another 3 plus years I don't think.

As for more information, there's here. There are lots of us here with lots of different diagnoses and children of different ages, but also do look at scope and their forums. Ask you paed loads of questions.

Finally and this is not for everyone, nor is it necessarily worth pursuing but you may want to take some legal advice from a specialist clinical negligence solicitor. You may not have a claim, and even if you do it is not for everyone to follow it up ( personally I wouldn't ) but having a child with cp is expensive. You should also apply for dla.

[Galena]

Welcome choggers. I hadn't heard about SDR until DD was at least 2 and a half. I heard about it from online sources and weighed it up. I don't know how they decide who is suitable and who isn't. However, I do know that diagnoses often evolve - someone may start with a diagnosis of spastic diplegia (just legs affected) and then be told, well, actually it's hemiplegia (one side affected) or quadriplegia (4 limbs affected) and so on. So, at this stage, physio is very very important, and other things may become appropriate as it becomes obvious how the CP affects him...