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baby at risk of cerebral palsy, how will it pan out?

(28 Posts)
madmouse Sat 13-Sep-08 21:30:06

My ds was born with brain damage, which we found out very early (ie 5 days old) due to seizures. He is now 7.5 months and has been off meds for 3.5months and no more seizures. His head growth is very slow and his head very small, but consultant is happy with his progress and says that is more important than head size.

She has identified him as at risk of cp though, as he is a bit stiff in his limbs, particularly on the right, and he forgets he has a right arm and dislikes using it.

He has had physio for a month now and he is making some progress already, his physio is pleased. He is also remarkably determined. He wants to crawl and because his right arm is not strong enough he pushes up with his left and with his head (!), which he tries to bury in the carpet. All this screaming with frustration. He loves bouncing up and down and standing and he can stand with you holding his middle, but he curls his toes. Consultant seems fairly convinced that he will walk, but maybe late.

He can sit up for a bit if you put him in sitting and he is not distracted too much.

I have a feeling that his arm is holding everything back.

Not sure what I expect, but how serious a form of cp does this sound? How long before we know what he will be able to do?

I have a feeling that we are fairly lucky as these things go?

anonandlikeit Sat 13-Sep-08 21:42:52

HI Madhouse

What a beautiful boy(just had a look at your profile).
It really is impossible at this stage to tell how effected your ds may or may not be.
But his progress sounds brilliant for 7.5 months.
My friends ds is 7.5 months & making no attempt to sit or crawl at all.
Its good that you have physio & a paed working with you & your ds, don't be afraid to discuss your concerns & question them.
If he has good head control & attempting to reach & grasp for things it is all a good sign.

It's impossible not to worry i know but it honestly is a case of wait & see.
Has your ds had an mri?

There are lots of others on here with experience of similar, my ds2 is 5 & has mild CP & ASD.
Take care Anon

madmouse Sat 13-Sep-08 21:51:45

thanks anon

yes, by the time ds was 5 days old he had every conceivable type of scan including two different mri scans. he has light patches n his brain, the most hit was his visual cortex and we were warned that he was likely blind, but he sees brilliantly, no one seems concerned at all.

it is not clear what happened. my consultant thinks I may have some risk factors that cause an inflammatory response under the stress of labour and that in turn causes blood clots in baby's brain. have been advised to have sections for next pregnancies.

he has great motor skills with right hand, grabs and holds everything, attempts to spoon feed himself etc.

i know i need to wait and see. I guess part of posting here is also getting myself to accept that ds is in some way disabled, although I am also quite convinced that he has the ability to be very happy indeed.

Truth be told i am more worried that he will at some point get epilepsy, but consultant says that the risk has decreased as his neonatal fits have not returned

thanks for listening, am aware that i am waffling now.

madmouse Sat 13-Sep-08 21:55:21

that was wishful thinking, those great motor skills are with his left hand...

anonandlikeit Sat 13-Sep-08 22:08:06

My ds as a baby was thought to have a right sided weakness but his diagnosis is actually spastic diplega, so his legs mainly are involved.
DS really didn't know he had arms at all at your ds's age, we had to teach him to reach & grab by constantly stimulating his hands & arms.
Most of my ds2's early problems, that we thought were indicators of more severe CP have fortunatly turned out to be delays rather than permanent disability. Although he does have low muscle tone in his upper body & is therefore floppier than the average 5 year old. He actually has very near normal use of his arms & hands.

Have you been given any specific exercise or advice to help with his arm?

madmouse Sat 13-Sep-08 22:16:45

yep, lots

lots of massaging and sgtroking
daily stretches of triceps and hamstrings (poor lad hates it)
big arms exercises
now big arms and reaching out/up for exciting toys
making him lie on his left, which seems to free his right arm but he gets so terribly upset that he refuses to play, so i am getting him used to that.

I have given him tummy time from the week he was home froms scbu and have been told that that is the best I could have done. He has great head control and loves tummy play, also rolled front to back at 11 weeks and recently learned to roll back. I am now teaching him to roll and roll and roll. although the distance he seems to travel when I am not in the room makes me wonder whether he already knows that trick.

there is quite a lot to do everyday, but we feel this early time is where we can achieve most. I am happy with our physio who visits at home so we can work with his own toys on his own mat.

very interested to read about your ds. I ma hoping some of Nathan's probs are also delay, as I have the funny feeling that his right arm is just developing slowly. He now occasionally waves it about when he lies on the floor, and that little fist gets less tight.

anonandlikeit Sat 13-Sep-08 22:32:59

He really does sound like he is doing very well, rolling is very good!

My ds2 also hates his stretches when he was a baby I used to do them while he was in the bath, he seemed to tolerate it much better & I think it produced a better range of movement & then when i was drying him off i repeated them.

Do you take your ds swimming? If not it my be worth a go. As a baby it didn't work for my ds as he didn't enjoy it & would tense up as soon as he got in the water but for some it helps.

You sound like you have been doing all the right things.

mshadowsisfab Sat 13-Sep-08 22:57:19

Your ds sounds lovely. and like he is doing very well.(it does sound like he might have a weakness on one side)
my dd has cp but as it is severe. I won't tell all
sadly a lot of dc's with cp do get epilepsy......but a lot don't.
wishing you loads of luck.

mshadowsisfab Sat 13-Sep-08 22:58:55

just to add that you might find conductive education good. as it does help dc's learn to overcome weaknesses iynwim

sarah293 Sun 14-Sep-08 08:10:58

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TopBitch Sun 14-Sep-08 09:35:08

I just wanted to wish you good luck He sound like he's doing well.

madmouse Sun 14-Sep-08 15:12:45

thanks for posting, especially people like riven who know all too much about the bad side sad.

riven 50/50 is good odds for us, used to be much higher as ds' seizures were very hard to stop initially (5 drugs, 24hrs was ventilated due to apnoeas every few mins).

anon ds luuuurvs swimming, kicks legs so hard he lifts himself out of water, grins and shouts with excitement, so we go weekly and i sneak in lots of exercises

sarah293 Sun 14-Sep-08 15:23:50

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madmouse Sun 14-Sep-08 15:29:39

riven apnoeas were before drugs and main symptom of fits.

sarah293 Sun 14-Sep-08 15:34:28

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madmouse Sun 14-Sep-08 15:37:45

nope, not since he was three days old smile

sarah293 Sun 14-Sep-08 15:40:30

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madmouse Sun 14-Sep-08 15:52:54

scariest time of my life. had hell of a labour, then pink bouncy baby with apgar 9 10 10 and crying, 12 hours later dh says isn't his colour funny and he went blue and turned away sad. still thanking God that i had him in JR Oxford, great scbu.

next time we saw him he was in incubator trying to pull out tube with tiny hands, saddest moment of my life. he had a low level ventilation until they were sure he was no longer fitting. spent the best part of a week sedated, but set about bf as soon as awake which was seen as a Good Thing

still use apnoea monitor now, but only ever had one false alarm.

WhatFabNewNails Sun 14-Sep-08 19:10:46

I wonder if it's harder if all looks well when your baby's ds (quad cp), now coming up for 14, started with an APGAR of 2 so what followed was kind of inevitable. Your ds sounds very much like mine at that age.
DS had a 'secret hand' too. At first it was very tightly fisted but with physio, OT and some splinting it did loosen up. We also did conductive education classes locally. We also used the Portage service. He never gained much use of it though. He has about 80% use of his right hand, about 10% of his left. Also had a diagnosis of 'epileptogenic foci' after MRI, although he has never fitted. We have much to be thankful for.
Now rising 14 he walks well although u won't see him on the catwalk, handwrites, playstations, wiis, mobile phones (£18 of credit since last Thurs!). Swims and cycles but with a bias to the right, ie dodgy steering.
He (and us) are more or less decided that he is going to have a tendon transfer on the left hand in the near future to improve function and to give a bit of back-up should his right arm deteriorate (that elbow is fairly stiff and partially dislocated).
He is also a really grungy rude teenager so that's something for you to look forward to.

WhatFabNewNails Sun 14-Sep-08 19:12:01

Also, my practical hint, brussels sprouts on the good side, chocolate buttons on the bad. That'll get it moving!

madmouse Sun 14-Sep-08 20:45:38

newnails that is such an encouraging post thank you! (smile)

misdee Sun 14-Sep-08 20:47:50

wil lsee if i can hunt down sparklygothkat and send her this way.

magsi Sun 14-Sep-08 22:49:42

Hello madmouse

My ds is 6 now. He has a severe right-sided Hemiplegia. This affects his right arm and hand (which he cannot use at all), and he wears splints on both legs. He suffered infantile spasams up until he was about 2. Nothing since grin. I can say that for your son to be doing so well at 7.5 months is brilliant. Of course I am no doctor, but can just share my story. Ds took his first independent steps when he was 4 (best day of my life smile). He has trouble speaking though, although this is rapidly coming now since being at mainstream school, full time. He legs it around the playground now (with a limp, but you should see him go!).

Your son sounds like he has great spirit which will stand him in good stead. There may be some frustrating times ahead, but these will only make him stronger.

Take care

sarah293 Mon 15-Sep-08 08:19:20

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Romy7 Mon 15-Sep-08 10:06:02

hi madmouse
apgars will give you an idea of longer term outcome but aren't conclusive in any respect - dd2 was born at term with apgars of 1 at 1 (midwife gave her a 1 because she did actually still have a heartbeat at that point - 28bpm),1 at 5, and 2 at 10, neonatal fitting, scbu and dx with quad spastic cp. ng fed etc.
all milestones delayed (used neither hand until very late - kept them fisted, thumb in palm under her chin etc etc) and we were told she would not be verbal etc etc, but she has now just started ms school, walking and talking (and attempting to run...). she does it all in her own way (like newnails said - she is unlikely to grace a catwalk lol), but is a determined little madam and ploughs on regardless. obv it's taken a lot of work by everyone (including her!), and all manner of equipment (the joys of which will no doubt be visiting a living room near you shortly) but she is a star. (she is a part time wheelchair user for stability and speed)
your little man sounds like he is doing fabulously - and you are doing all the right things. we found that between 2 1/2 and 3 we saw the biggest developmental leaps - until that point we had no idea what level of disability she was likely to have long term - so planning for the future is something you have to stay flexible over!
btw - at 4 they changed dd2's dx to athetoid cp, as all traces of spasticity except for slight intention tightening, have long gone - she is now more low tone with fluctuations, and a good dose of ataxia. if you had told me that the hands i couldn't prise open at 6 months would be low toned and hypermobile at 4 years, i would have laughed you out of the room... so expect the unexpected and don't be too disheartened when the docs say 'i don't know, we'll have to wait and see', because genuinely it is the only thing you can do...
sending you all best wishes xx

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