Cerebral palsy and learning

[bobalinga]

My daughter has severe CP and is visually impaired. She's been assessed as having normal intelligence but given she can't move anything, even her hands and can't see so well, I feel despiar about helping her to learn what other children learn. It just seems so overwhelming. I play with her all day, tell her things, put her hands on things (I'm exhausted doing all this) but there's so many concepts she lacks that are learned through movement.
Any advice or maybe good stories so I know it will come eventually?

I can vouch for glittery too!!
Was also very interested to read about sinemet. I was researching online (what, again you say!! - its all I do) and reading about basal ganglia, extrapyramidal effects and the similarity to parkinsons disease, and the intentional stiffness movements and thought it was similar to DGSs arm movements. Also looked at dystonia in children unrelated to CP and of the use of sinemet in them as a 'trial' and thought 'I wonder if its been tried in CP?' And there you go, it has! Maybe DD will discuss this with the neurologist and the possible risks/side effects. DGS can move his left arm where he wants it but it take enormous effort and concentration and his right has much less control. His left is slowly improving and seems smoother and having a wider range of movement and control. Is it because of 'patterning' and his brain making new connections round the damaged ones? CP (especially DGS) is sooo complicated.
We were at Brainwave this week and the physio there said he was a complicated little boy - phew though it was me being thick!

Yep, the font of CP knowledge i am!
Sinemet is definately worth a go if theres any dystonic symptons.
It doesnt work for every child and some neuros are averse to trying it as its not licensed for use in children so they start at a ridiculously low dose then give up because it doesnt appear to be working, ds was on 2 or 3 tabs of 62.5mgs before we noticed real change.
Ds is always doing the opposite of what they expect so i always ask them to try the things they think probably wont work first, lol

ooo, look at this!

dd1 used to make what we called a 'throwing fairly dust' movement with her left arm, cyclically. her tone was all over the place, but we think it was probably her first purposeful movement, but obviously complicated by her cp (basal ganglia damage - athetoid cp). it's a very common movement with that type of damage, several times people have said 'ooo, he/ she did exactly the same thing!' she had a lot of trouble initially - would swing for things a few times before her hand connected, very poor gradation of movement etc. she then went through a period of mirrored movement (so if she reached for something with one hand, the other hand would mirror it) - very difficult to control!

we've had a few meds suggested, and i tried to get a sinemet trial but was turned down. as it happens, her movement has improved no end over time, with physio etc. she's still a bit swingy and wavy, but very functional. still a bit athetoidy with fingers and toes, (and a little facial stuff) but gross movement much better.

but how nice to see an old thread!

fairy dust, lol. not fairly dust. at first we thought she had an ear infection, or similar. (she had a huge scratch from her ear to her chin, swiped across her cheek). i remember several team meetings where we all sat around scratching our own heads trying to work out what was going on. but i think it was just that whatever she tried to do, it was complicated by a spasm.

anyway, her left arm was really the only one she used until she was about 3.

Can I ask what you mean by athetoidy in fingers and toes madwoman? Basal Ganglia is where dd has damage and her fingers have always been 'stiff' with uncontrolled tightening of her index finger with intention. She has much better control of them now but she over compensates for the tightness so her fingers almost bend upwards at times! Have wondered what is going on there so just interested to see if any similarities....

DGS (basal ganglie too!) stares intently at his fingers as they do a wierd sort of dance, first one finger pops up, then another then the thumb goes in his fist, then fists - then opens!! Not all the time just occasionally. very comical though when he does.

He also does the reaching forward for things with his good arm (left) with it looking like it is being pulled back with a giant elastic. You can see intense concentration on his face. His right is now coming in to 'mirror' too and he is opening his right on occasions.

But he's not officially athetoid but affected in 4 limbs with hypertonic extensor pattern with underlying hypotonia, bit of minor stiffness in the legs, fluctuating tone, no spasticity but still spastic quad??!!

Brainwave physio said it all needs reclassifying to explain how the children are actually presenting!

basal ganglia - having a non spelling day and can be so pedantic at times with spelling!

Oh and poor balance and self righting and low tone in trunk. She said he was complicated and difficult to get a handle on immediately. Did in the end after he screamed at her a few times. Said his intelligence was on target though

smashing - dd2's fingers were very tight to start with, (and the typical thumb in palm thing) now she has (mostly) very low tone, the 'athetoidy' bit is the fluctuations in tone really, so sort of wiggling/ rippling/ twitching maybe? difficult to describe . she had a lot of problems with intention tightening when she first started making purposeful movement though - it was a real pita.

yeah - dd2 was officially spastic quad until she was 4. when i demanded a recount. she was so low toned by then it was pretty funny to see a new therapist for the first time who would do a huge double take. it said spastic quad all over her notes but she was absurdly low toned - joints loose as.

to be fair, she was completely different as a tiny. tight tight tight. unbendable.

maybe we overdid the physio?

lol @ "maybe we overdid the physio?"

that was indeed a very sensible Physio/OT as thats exactly what happened when ds tried oral Baclofen, his trunk got floppier and his limbs tightened up!

that's really interesting glittery... it would have been interesting to see if that was the case with dd2, too. she's definitely a lot more able with her arms if her trunk is stabilised - so at nursery and school she had pretty robust supportive seating etc, same with dining chair. (in fact we're having a bit of a barney about her dining chair at the moment. she says she doesn't know anyone else who uses one and so doesn't want to. greeeaaat.)

stabilise her pelvis, and her fine motor improves a lot.

physio's main focus is trunk now - has been for a year or two. that and balance, anyway. tied in. this year she's going to start horse riding too - so i'm really looking forward to seeing if that improves her trunk tone. and it's nearly swimming season - yay!

Thanks madwoman - yes dd's hands started off as tight and now mostly low toned and hypermobile and she's similarly much more able with her hands when her trunk is supported. Again, it took a while for the physio to suggest that it was all linked to her trunk strength rather than just high tone!

We've also been told by new physio that as her trunk improves so will her limbs. Her trunk muscles just seem to be taking so, so long to improve (dd is famous in our village for her 'running' style!) We're waiting for horse-riding with RDA but can't start until the end of the year

Still, sneezecakesmum's advice about how children with this type of CP/injury can continue improving keeps me going - that and the fact that our physio has changed and the new one is sooo much more positive - phew!

We did lots of exercise with DGS between 1 and 2 years trunk and balance wise and thought that would be it, but brainwave physio said it is still where his issues lie and given us lots of exercises to carry on with, (he's 2 1/2 now)
Brainwave was an excellent experience and explained so much of what is going on with his arching back/movements and so on. DGSs hands are also hypermobile which no one had noticed before. I hope he has stopped developing now so we can get on with how he is. Know exactly what you mean about stabilising the trunk and the hands work better, but if we do the stabilising for DGS then he wont build up the muscles. Apparently he is using his high tone (which fluctuates) in his neck and pelvis to compensate for the weak bit in between, which explained the 'flippers' (arms held out behind him as a counterbalance - very comical looking but def NOT good!)

No wonder we've struggled to know what is going on with him but it is much clearer now.

That reminds me we must contact RDA asap as i know there is a long waiting list.

ah, the old 'to support/ not to support' decisions...

quite right - if you support all the time, the muscle's don't strengthen. if you don't support, (particularly hitting nursery/ school age) the fine motor skills fall further behind.

eventually you have to decide which has priority in any given situation. we basically have decided that school (for writing) and dining table(for independent eating/ cutlery use) need support. the rest of the time, she is on her own.

when they are a bit littler it's less cut and dried. but i don't want her falling behind with school work because she is exhausting herself using her muscles to stay upright .

that said - she is using a normal chair now in g2... after we move again i'm going to ask the new ot and school to review that.

get on those gym balls.

yep for years we worked on Ds's head control but there was little or no improvement so last year we started using a Hensinger head support and its made such a difference! For the first time in his life he was tried in a walker and managed a few steps purely because something else was holding his head up!

yay! are they going to provide one for him now?

nah, he's no that good! but they have spare ones in school that they can use, he wont ever "walk" as such but its nice for him to have the sensation of being upright and being able to move but not being strapped into a standing frame :)

and really good for hips etc - upright and weight bearing is soooo important, even for short periods. i'm so glad we are out of standing frames now. great that school have some if they fancy doing something a little different though.

sorry, just browsing and haven't read all posts - but saw word SINEMET - my daughter (age 9, quad athetoid/spastic cp) has been taking this for about 6 months. At first I hid it in food, but after 1 week, she asked for it and explained with her comm. device that it made her hands feel better. Now she won't eat her breakfast without it, or start her bedtime milk without it. Interesting side effect (great for me) is that it makes her sleepy - she has 1/2 tab in morning and no sleepiness, whole tab at night and she's like the princess who falls asleep as soon as her head hits the pillow. Neurologist was surprised at this side effect, but, hey the hours its taken over the years to get her off to sleep...I'll take anything! I wasn't sure if I saw more control until she mentioned it, but she is definitely having an easier time accessing a keyboard (previously only used head switches to type), and can be quite effective with an ipad. We are in US so our neurologist just prescribed it off-label as typically an adult parkinson's medication.
At our last neuro appointment we saw a new doctor who suggested the possibility of deep brain stimulation, which apparently is something for cp kids with damage mainly in basal ganglia. (Electrodes placed into brain which mimic neuro signals that are not currently functioning properly.) Not sure how dd would react to that!!!!

sadly ds hasnt experienced the sleepy side effect, typical!
he's on 7 tabs a day now, 2.5 in the morning, 2 at lunch and 2.5 at tea time.
we are waiting on the trial for the Intrathecal Baclofen pump but im undecided about that at the moment!

wentshopping - oooh I'm fascinated by the deep brain stimulation therapy. I saw someone having something similar to this on a programme about brains on BBC4 (UK) recently. This woman (NT) was typing and having her brain stimulated at the same time which can help to make new connections in the neurones and strengthen them to a huge degree. Trials were taking place in Germany/Holland I think? Is it on offer in the US now? Hope it becomes available here at some point!

Can I ask you lovely, helpful people about speech ? DD's speech is slurred at times which I think is typical for this type of basal ganglia injury and I wondered if anyone had found speech therapy to be any use for slurred speech?

glittery - ahh, shame about the non-sleepiness. she takes 1/2 tab in the morning and 1 tab evening, although we are going to add a lunchtime 1/2 tab to keep the relaxed hands all day at school. I wonder if our tabs are bigger in strength than yours - 25-100mg. We have discussed intrathecal baclofen pump, but she's too skinny to have that surgery at the moment - going for a g-tube soon to boost her weight. Dr here said we would do a quick oral baclofen trial first, but then move to intrathecal as oral baclofen would make her dozy at school. (See also my botox unhappy story on a different thread). There's a teenager at our therapy clinic who had a baclofen pump, and he walks into the clinic, no walker, no sticks or anything.
smashingtime - the neurologist explained the procedure - drill through the skull, then insert electrodes into the basal ganglia area, and stimulate then while asking dd if it felt better or worse. I'm not sure how this would go as she is non-verbal!!! Apparently it is being done in France and Canada, and has just started in Houston where we live. She said we can go back and discuss whenever we like.... she did say you have to wear batteries in your armpits, which wear out and get replaced. I had visions of AAs being visible under the skin :)
Speech - can't really help as dd has no speech, just vocalisations - mum and no being the easiest to make out. We have various communication devices, including an eye-gaze device if anyone wants to know about that.

yeah it sounds like yours are double the strength of ours?
our tabs are the 62.5mg ones (50mg levodopa/12.5mgs carbidopa)
Ds has had a tube for about 2.5 years now...its made such a difference!
ds is the same speech wise, only thing he can really say consistently is yes and he too has an eye gaze (MyTobii P10)