Anyone with a child with CP - MRI results what do you reckon?

[verycherry]

DS3, 2.8 yrs, has spastic diplegia cerebral palsy dx on clinical presentation.

DR rings today with MRI results - demyelination consistent with dx of cp, some mention of cysts but nothing significant, no change to prognosis, cause most probably antepartum bleeding/hypoxia/poor placental function.

Could'nt really take all she was saying in, was not expecting call and she was talking very quickly and I could'nt think straight to ask questions. Had been expecting MRI to be clear, although I know and totally accept his CP, ummed and ahhed about actually having the MRI as they had said v poss nothing would be seen on it.

I bled from weeks 8-30 during my pregnancy with DS3 but his paed told me she did'nt think this was the cause . He was born at 38+4 following induction and was small (6.9) in comparison to my other 3 who were all born at same gestation.

Have been googling and have come to conclusion that despite him being born at term he prob had PVL as it seems this can be caused by antepartum bleeding and significant hypotension, both of which I experienced. Most significant bleed was at 26 wks and was admitted at 27, 28 and 29 wks and had steroids. It seems that PVL occurs at 26-34 wks and most significantly usually results in a spastic diplegia and can involve formation of cysts in the brain.

Has anyone had experience of this? Anyone had similar MRI results? Would you reach same conclusion as me? Have requested copy of report for our records and to get DR friend to read with me.

badkitty my computer won't let me CAT have been trying for ages, but my e mail is jestra _ 99 @ yahoo .co .uk all in one.
I'm also on facebook
ds also has the flinging back issue, which I think is the muscle tone thing.
dose your ds have the extention thing, when he tries to do things? as that and excitement seems to be the main trigger.
right off to get ready for the hydropool session.

OK thanks - will email you!

That throwing themselves backwards is so powerful isn't it! I used to have to warn people who held DS1 to have an extra arm ready as he would sometimes just fly back.

We have had very good results from botox - which started way before he began to walk. if you do a search under my name in SN there will be lots of posts about it! Have never used or been offered baclofen though, I think it is because DS has classic prem CP with low tone in his trunk which baclofen would only make lower!

Thanks - will have a look! Has your DS managed to overcome the flinging back impulse now HM?

sneezecake - dd2 used to have both hands fisted (thumb in palm) tucked under her chin in a sort of boxer pose, and was pretty much unbendable... (also lots of throwing backwards/ extension). loads of physio later, and she's mostly low tone (and has hypermobile joints) - one of the later physios (at around 3 or 4 when the spasticity had reduced a lot) said that she thought her extremities were so tight because her core was so low toned, which made a lot of sense tbh. so they've been working extensively on her trunk (and giving her trunk loads of support to give her fine motor a chance) and she's a different kid...

we've also realised in hindsight that we totally misread some of her movements as a tiny - she had what we thought was a small amount of purposeful movement with one arm (and appeared to be using it to scratch heck out of one stripe down the side of her face - everyone (gp/paed/ therapists) assumed she had an ear infection/ whatever - it drove us bonkers - we used to have to keep a mitt on that hand as she would scratch her face raw) but in hindsight it was probably one of the first signs of athetosis - just a repetitive cyclical movement that wasn't purposive at all! (a friend describes her daughter's identical athetoid symptom as 'throwing fairy dust' lol) anyway - a few other athetoid bits crept in over time - but really only fingers, toes and face - so far she's not had any classic athetoid trunk movements, although has had some issues with head turning etc along the way.

the only time she throws herself backwards now is if there is a loud noise/ unexpected scare - sort of a retained moro i think (even though she's walking - it knocks her over lol). she still has tightish ankles - at one point they were looking at botox, but we've managed with physio - the standing and walking frame use, and then walking, with us doing physio have made them pretty functional. she had gaiters for a while, but not convinced they did much tbh. she overcame the extension during purposive movement thing by a series of really good supportive chairs - and graduated to propping herself .

she's a completely different kid, really. we were told she wouldn't walk or talk. it's so difficult to predict - i do have a lot of sympathy for docs tbh - there really is just no way of telling, i'm sure.

we've just ordered a jenx junior 1 to help with the sitting, and hopefully encourage his right had to open and become useful. it also prevents him from pushing back, so maybe (fingers crossed) he'll start to realise that the pushing back is a useless movement and he can stop it???????

DS does seem to be loosening up all the time, at swimming today a physio was stretching his legs, and said that there was minimal resistance, that was until his attention was taken and went all stiff!
I really don't know what to think, wrt which type he has, I'm no expert and I only have books to go on. and I don't want to go against our physios word, as she is really nice, we have a good relationship and she is fab with ds. oh hum its back to the watching and waiting

oh and the scope forum is back up and running

oh for a crystal ball, eh? but only time will tell.

our first physio wouldn't recognise dd2 now, but she still had a huge impact on her development. our physios have been fab. the first paed consultant we had, told us that he was really just an add-on background figure, and that the physio would be the most important person in dd2's life.

mad woman - how old is your DD now?

Riven - we saw Prof Whitelaw at Southmead - do you know of him?

My dd used to do the flinging back thing too but now sits ok - a lot in W position though cos of her hypermobility and she shuffles about due to her low trunk tone.

Sneezecake - was interested to hear your physio said ds might grow out of the fluctuations. DD is now nearly 3 and still has them although I think it is getting less as she's getting stronger (when she's ill gets worse again ). She presents more as floppy these days and then stiff as a board when trying to run .

she was 6 in september (and she tells me she just had her half birthday but i did point out that there are no presents or cakes to be had on half birthdays, however hopeful she might be.)

mintyfresh been lurking on this thread, but don't know any thing much about MRI
does your get about in the W position?
dd could never sit in the lage in a normal position way, so the physio taught her to sit in the W position, and that is how she gets about on the floor(and she is quite fast)

sneezecake no worries gatecrash away

madwoman paed said she was going to refer to neuro but hasn't done so, she told me findings of MRI as discussed with reporting radiologist so to my knowledge no neuro input. Definitely need to push for neuro appt with copy of report I think.

mintyfresh my ds w sits alot, he was standing/cruising well but since having ds4 15 wks ago he has gone back to w sitting nearly all the time and shuffling on his knees which I think is prob not good for him. Unfortunately he knows exactly what I want to do when attempting physio and does the exact opposite - his last block of physio was cut short because of this. I think he is not liking having a baby brother much.....

has the physio suggested gaiters for long-sitting if he is determined to w sit? just wondering if you could use them for short periods whilst feeding etc/ could you sit on the floor with him and ds4 and occupy him?

just wondering when dd2 had hers - i think she was around 2.5... that said, these days we try to prop her against something which takes away the need to w sit. little monkey with the physio - what does he dislike the most? we used spangly batons from the pound shop to hold attention (and good for holding onto if you get back to standing/ cruising, too).

loads of the stuff from hawkins bazaar is brilliant too - squishy toys, balls, flashy stuff. we also had a physio wedge on loan that was good for rolling stuff down (like cars ) as well as doing other exercises. dd2 always hated the gym ball though lol (unless she was laying face down with her mouth against it, humming to feel the vibration) so i do know where you're coming from.

Riven. 1 hour every 2 weeks - same as us, it is a scandal I think, its hardly even a token gesture.

Riven - that is a travesty about your physio. Am to hear that your dd lost her movement because of the steroids. Did you have your dd at Southmead too?

2shoes - dd's physio doesn't seem too worried about the W position although she has recently started to try and sit cross legged for all of about 2 seconds!

dd could never do that, she is 14 now and still can't sit with legs out stretced or crossed.
but using the w position has given her independace as she can move arround like that.

madwoman not been on due to v sad demise of pc! have use of rickety old laptop for the mo.

He does have gaitors but I have been v bad at using them (and he would not have tolerated them recently) he was an utter monkey at physio but I think a big part was attention seeking - well I hope.

He starts physio again tomorrow and seems excited about seeing his physiotherapist again so am keeping everything crossed that he will engage. Thanks for the ideas will have a look on harpers bazaar, he likes doing things that involve distraction like using bubbles etc, he also dislikes the gym ball.

He has been using his kaye walker lots recently and preschool noticed his strength has improved over the easter hols.

I think we have all indulged him far too much, particularly since ds4 arrived. I've started making him walk with me whenever he wants anything eg: drink from the kitchen etc rather than fetching and carrying for him!!

Am frustrated though as I am always the one who puts him on his frame wherever we are/whatever we are doing and makes him do things for himself

Bugger accidently hit post!

Was saying that I am always the one who does his physio/walks him on his frame everywhere etc whilst other family members do this they prefer to take path of least resistance most of the time for either an easier life or underestimate his ability because of his obvious disability.

Tis hard work as makes me chief enforcer of everything from physio to discipline (and thats a whole other story he is rather challenging at the mo)