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.

My Ds1 had another MRI scan last year (his 3rd) which showed the damage seen when he was smaller, and immature myelination shefts. He has a dxd of SD CP. No PVL for him BUT my DD1 was born at 31 weeks and DOES have PVL and SD CP.

Thanks for replying sparkly. Thats interesting, so presumably he can have just demyelination and it be nothing else? Am just trying to make sense of what Dr said re cysts also.. but as he was'nt prem it seems less likely to have been PVL maybe.

Are both your dc walking? and if so how old were they?

Ds1 is 12, he can walk short distances, he had an operation in 2008 to release his hamstrings and ankle tenons.

DD1 is almost 10 and her CP is mild, she is slower in walking but she has learning difficulties, and ADHD, which is actually harder to deal with than the CP.

My DS aged 5.1 has spastic diplegia (with upper limb involvement) and his MRI shows demyelination and PVL. He had a grade 2 bleed and was prem, born at 29+2. As far as I know he doesn't have any cysts. Apparently it is possible to tell from the MRI when the damage happened, something to do with how the brain forms, but we have never gone down that route assuming it was to do with the prem birth (although we have no idea why he came early). If it puts your mind at ease getting a Dr friend to read it may help.

I have recently been told that omega 3 and 6 may help with myelination so DS has been having lots of that - no idea if it helps but it won't harm!

Suppose was asking if he had PVL or if demyelination can just stand alone?

His paed is a bit crap, told me he did nt have cp when I first said I thought he might then after dx said it was not as result of pg probs and is now saying it is! So am slightly reluctant to totally accept her interpretation of the report although I completely understand/accept that he has some degree of damage to his brain.

Interesting that it may be possible to determine time damage occured.

is demyelination the same as immature myeline?

My dd was born at term following placental abruption and has damage to basal ganglia and thalamus. I thought spastic diplegia more commonly affected prem babies but am no expert so might be wrong??

Our consultant in Bristol seems to be a bit of an expert on brain injury nationally but couldn't say exactly when dd's injury would have happened only that basal ganglia injury tends to happen to term babies.

The myelin sheath covers and protects each individual nerve cell, in some conditions and diseases (eg. multiple sclerosis) it is damaged (not present) and not protecting (demyelination). A friends toddler was born around 28 weeks and has dx of DP CP so I think when the insult to the brain occurs determines the type of CP. He has cysts on ventricles.

My DGS has patchy basal ganglia damage following a traumatic birth, and its mostly balance and coordination with him (fits dx). His legs are not bad and he makes an effort to crawl legwise but arms trail and he gets carpet burns on his chin - looks funny bless

DGS was term MINTY but also had a rubbish placenta which didnt function well so was small for dates, we think thats why his placenta also abrupted causing oxygen starvation to LO

dd2 was term but birth hypoxia - her mri agrees with athetoid dx (damage to basal ganglia mostly) although she was dx spastic quad originally.

ime paeds not the right people to ask - ask for the neuro appt to fully debrief mri findings. it's only necessary once as long as no changes to presentation or szs. it was very useful for us.

DS has CP though I don't know exact diagnosis (sorry not up to speed on all the acronyms)but all limbs are affected to a degree.

He was two weeks late and induced, bad birth, resus etc. MRI at 6 weeks showed damage to basal ganglia and neuro advised that they could tell damage happened sometime in late pregnancy - post-30 weeks.

DH convinced that care (or rather lack of it) at labour/birth may have made things worse, but assured this was not the case by drs (but then, they would say that wouldn't they). Read some articles online saying that less evidence now to support previous theory that CP was caused due to trauma at birth. More likely to have been in utero damage in most cases.

sookie - most cases. but hypoxia during birth/ labour is commonly associated with damage to the basal ganglia and whole body involvement (frequently athetoid). it's all generalising though.

that's not to say that negligence is the cause of athetoid cp, or even cp as a result of hypoxia at birth...

interesting that the neuro pinpointed damage done during pg post-30 weeks in your case, rather than at term. ime neuro usually a lot more frank about these things than anyone directly involved.

Thanks for all replies, think it would definitely be helpful to get neuro referral paed did initially say she d refer but has nt happened much like several other referrals nothing ever seems to go smoothly. Will insist on referral hopefully will gain better understanding.

very - find out which neuro referral was made/ will be made to and call their secretary. sometimes you can pick up a cancellation appointment which saves waiting on the list. try and make sure that it's the neuro that reviewed the mri though lol - otherwise you need to make sure they've seen a copy, or it's like starting over...

madwoman ds has been dx with spastic quad, eventhough when seen by the neuro chap he said there was no spasticity in his upper limbs, but he does keep his right hand fisted, but is is slowly improving.
his abductors are obviously tight. was your dd legs tight at all and did they loosen up with age? ds was term with basal gangia damage.
sorry for gate crashing verycherry

Hi riv I find the waiting and seeing so frustrating. and keep saing to myself that the treatment wouldn't change, so just get on with it.
He doesn't have extra moventents as such, but has the fluctuating muscle tone, which my physio said he will grow out of.
we were offered baclofen but turned it down as he is not that tight, but the neuro dr wanted to discuss botox in june 'when he starts walking!' (he cant sit without propping yet)

well thats just what I'm wondering, if his tone changes like madwoman's dd would he actually need botox and am I doing more harm than good?

DS was also term with basal ganglia damage, and some other bits I think. Never been seen by a neuro, they haven't even suggested it, I haven't pushed for it as its not like they're going to be able to do anything, but maybe it would be useful. Nor have they given any diagnosis re athetoid/spastic etc - I always get the impression that they think we are too stupid to understand that type of detail, have been fobbed off with patronising answers ("well, you know it affects his whole body...") when have tried to get a proper diagnosis We have been told though that they cannot pinpoint the time/cause of damage - which I am dubious about given the birth trauma, think they are just nervous of litigation.

Off topic question, sorry but do baclofen/botox do the same thing? Am wondering if either might help reduce DS's alarming tendency to fling himself backwards. It is so annoying as he can sit nicely for a bit sometimes if in the mood - then out of the blue, back he goes.