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Peadiatrician is 'keeping an eye' on ds for CP. Is there anything I should watch for.

(15 Posts)
CarriePooter Wed 29-Jul-09 18:06:59

DS is only 4 months so not really doing much atm. He lost loads of blood at birth and was oxygen starved although I'm not sure to what extent.

The pead says he hasn't any obvious signs of CP atm but she wants to keep an eye on him. He is not growing (don't know if that is relevent) but she thinks his muscle tone is improving.

Obviously I should have said something at the time apart from 'ok' but I didn't.

Is there anything specific to CP that I should look out for at this age or not really? I don't want to miss a 'sign' then go back to the pead and say everything is fine iykwim.

anonandlikeit Wed 29-Jul-09 18:23:22

Hi Carrie
There are various types & severity of CP so can only really comment on how my ds2 was as a young baby.

Much floppier than the average baby, particularly head control & movement.
Poor/little ability to suck.
DS2 was very sleepy & lifeless but I know many babies with CP can be particularly irratible & difficult to settle. Not liking sudden movements etc.

He was very slow to make any physical progress, fists remained clenched etc.
Although now ds2's legs mainly are effected but as a baby it was his arms that had very little movement.

It really is a watch & wait game BUT 4 months is NOT too young to have a physio assessment, they are very good at checking out the natural reflexes & encouraing them to develop which is what ahppens naturally before the motor skills develop.

Many of the early indicators for CP can also be just developmental delays, unless CP is severe it can be difficult to dx early on.

You will probabily know best so if you feel things aren't quite right chase for follow up. The good thing is that he is being monitored.

CarriePooter Wed 29-Jul-09 18:36:51

Thanks

He is sleepy but that may be due to his other ishoos. She does test his reflexes every time she sees him and I just assumed that they were ok. I will ask next time. The reg said he was concerned about his fists being clenched so I will keep an eye on that. He has had so many tests for different things it is hard to take it all on board.

anonandlikeit Wed 29-Jul-09 18:57:01

How do you think he is doing?

DS2 ahd physio from birth (very prem) she checked things like the save & startle reflex, although I can't remember what age these are meant to develop, your ds may be a little young yet??
DS2's didn't develop naturally so we were given exercises to encourage.

Also things like stroking his arms & hands to encourage them to open.

The best therapy is play, try to enjoy being his mum & doing all the normal stuff too.

Does he have other medical problems as this can soemtimes confuse the picture

anonandlikeit Wed 29-Jul-09 18:58:11

BTW my ds2 is currently bouncing on the trampoline so it isn't always worst case IYKWIM.

CarriePooter Wed 29-Jul-09 19:12:39

I think he is ok but 4 months is young to be doing much. When he was born I thought he was going to die so I think he is doing really well. I am not not worried about him but I am not panicing. I think if he does have CP then it must be mild if it isn't diagnosed yet (as it is being looked for) but I don't know if I think that because I am naive/clueless.

His other problems are all short term and related to his bloodloss. He is 'failure to thrive' and has had a lot of tests related to that but I'm not sure what, if anything is the problem there.

anonandlikeit Wed 29-Jul-09 19:29:15

Ahh poor little thing, you sound like you have both been through it.
Soemtimes it can take a while for them to recover, just imagine the recovery time if an adult had been through the same.

madwomanintheattic Thu 30-Jul-09 14:40:30

hi carrie - have you been referred for physio? dd2 was discharged from scbu at 5 weeks with weekly physio, so it is worth asking if you are concerned. (she wa dx just before her second birthday, but she had a fairly ropey start and was also on 'watch'... we pretty much self dx by 6 months, but it took the profs another year and a half before they were willing to confirm cp. we were advised to claim dla for 'developmental delay' at 6 mos, and the sn hv filled in the forms for us...

anyway, she also held her hands fisted (which got a lot worse and she was very tight for a while - would hold her arms folded up under chin like a boxer too), we did lots of stroking, touching, unbending etc etc, and she now has low tone lol.

she also had what was described as a tremor when she moved her arms (a bit like shaking your fist at someone if you were cross lol)

anyway, what i wanted to say was, muscle tone can vary quite considerably over time, so i would definitely ask for physio assessment if they are concerned. dd2 was dx spastic quad cp at 2, she is now nearly 6 and the dx was changed to athetoid cp last year, which fits her current presentation and matches the pattern of her brain damage.

he sounds like a little fighter though grin dd2's first consultant said her determination would take her a long way. grin

sarah293 Thu 30-Jul-09 20:03:14

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springlamb Thu 30-Jul-09 21:24:46

My son has cp affecting all four limbs, his left side worse than his right. He's 14 now, beginning his GCSEs in September. We're on holiday camping at the moment and he is sitting at a picnic bench on the field with a group of other teenagers. It's getting dark but I haven't seen any fags or booze yet...
Once he was over his initial neonatal period, his left fist was still clenched. I am not saying your child has cp but I do think you might ask for some paediatric occupational therapy or physio input. I've said on here before that hand function is key to future independence and it is possible to begin at this age with exercises and perhaps some splinting (ds had his first splint younger than this).

sarah293 Fri 31-Jul-09 07:44:33

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CarriePooter Fri 31-Jul-09 17:53:47

Thanks everyone. I got a letter from hosp for his next appointment and I will remember to ask proper questions this time.

2shoes Fri 31-Jul-09 18:44:40

Hello sorry bit late to the thread.
dd is 14 and has athetoid cp, she was dx at about 10 months(although I think the doc knew before this.
the main thing that made me think something was wrong was that she never drank much milk and couldn't take a dummy(and of course she never she never passed any of the milestones)

MABS Sat 01-Aug-09 10:37:58

my ds is 8 and has left hemi cp. we started physio at 6weeks old,he was born at 27wks. ask for physio, you are entitled. Not in Sussex are you/ i could recommend some docs.

CarriePooter Sat 01-Aug-09 18:48:46

Interesting about the milk 2shoes. He is bf so I don't know what he is getting but he has gained less than 4lb since birth hmm. He did have a dummy in scbu and seemed to do ok with it.

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