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Cerebal palsy/development problems and premature babies

(6 Posts)
Verybusymummyof2 Thu 13-Sep-12 09:34:27

Hi, just looking for some advice and information here from anyone with premature baby who has had a CP or development diagnosis and at what age?

My dd2 was born at 28 weeks, had a very tough ride through nicu. She is now almost9 months actual, 6 months corrected and after googling which I know I shouldn't have done, I really do think she has CP. i may sound stupid but I know in my heart of hearts, that all is not right, I pray that I get proved wrong, but I have a gut feeling. She is not my first baby, she just seems different.

She has had clonus in her ankles, though his does seem to be less and less, pead has referred her to physio for slightly high tone in her legs. Not overly stiff but occassionally is, She doesn't roll, doesnt sit up unaided, when she sits she arches back. I also have concerns about her hands, she doesn't really grab, if she does it looks really hard and akward for her with h fingers bent rather than flat.

She does smile and giggle, but does not babble yet, she occasionally coos but this is mainly when she first wakes up. I can't explain but I just dont think things are right.

Did anyone have this gut feeling/similar oncerns and if so what did you do? This is driving me mad, Docs seem to be wait and see.......

Thanks x

efeslight Thu 13-Sep-12 14:35:13

hello there mummy, my little boy was born at 28 weeks in germany.
the week after he came out of hospital, around his due date, we had 2 sessions of physiotherapy a week, for 18 months. it was quite brutal therapy for such a little one, and i found it quite hard to see him in distress. however, the physio said the earlier you can re-wire the brain into re-connecting/re-learning movements, the better. (after some brain damage due to a haemorrage)
it took months for him to roll, he didn't sit up till over a year, crawled at about 14/15 months...once he was crawling we were discharged.
i suppose the point i'm trying to make is, if you feel something is wrong, i think the 'wait and see' approach taken by the drs will not help...can you self refer to physio, or see someone private for a few sessions? i don't know what wouldhave happened if we hadn't had this therapy.

Jane2771 Fri 14-Sep-12 19:37:01

Hi verybusy.... My DS was 10 weeks prem and was diagnosed with very mild cp a few weeks ago. He is 22 months ( adjusted nearly 19). He got dx as he was late in walking. He is actually walking now and he hit most of his milestones - although didn't crawl until 13 months. I always thought he was delayed in his motor skills but only stated to think about cp when he didn't walk. Speaking to his physio he is so mild that she says that's why it probably didn't get picked up until now. I'm just coming to terms with dx and feel a lot better now we are getting physio etc. are you still under the care of the hospital your dc was born? If you are worried I would ask for an appointment to see one of the consultants - it might be too early to tell but I would go and talk to them about your concerns. Hopefully all will be ok.

mymatemax Fri 14-Sep-12 23:02:32

Hi Verybusy
DS2 was born at 28 wks, he has a dx of mild CP (spastic diplega), autism & learning difficulties. He is 9 now & far exceeded all our expectations, he is a very, mobile, happy, healthy little boy.
He was discharged with Physio follow up as standard, physio noted immediatly his very poor tone, general floppiness, he was very delayed in all his milestones.
Didnt roll over until over 1 yr, didnt smile to at least 6 months.
Was first dx'd with Global developmental delay with a "lets wait & see how he develops".
TBH his development has taken a very disorded & unusual path & his muscle tone changed & varied over the time, IMHO an early diagnosis is not important.
What is Essential is early therapy & support from a paed Physio, also anything additional you can do... stretching & working her muscles while playing in a nice warm bath, swimming, loads of physical play games on the floor, time on her tummy, supported sitting to develop core muscle strength etc etc.

survivingsummer Sat 15-Sep-12 21:48:39

My dd wasn't prem (a few days off term) but was starved of oxygen at birth and had a lot of the same symptoms; clonus in ankles, difficulty sitting, occasional stiffness and problems grabbing toys due to her finger control. However, like Jane2771's ds it has turned out to be very mild CP, despite the way it looked in the early days and she has hit all her milestones on the late side of normal.

Agree that early intervention from physio/OT can make a huge difference so it is good you've had a referral. Lots of these issues can resolve completely - this is a good web-page if you haven't already seen it

amymouse Sat 22-Sep-12 19:38:00

Hi, we have just recieved a dx at 2years old and have been having physio in varying degrees since being on the neonatal unit with my 28 weeker. Brilliant news about the physio, whether there is something there or not, physio is not going to do any harm. At worst, it will loose you some hours in the week! Hydrotherapy is also excellent if you have access to any (often via physio or some private swimming sessions or SEN schools with facilities occassionally do public sessions) as it decreases high muscle tone, builds core strength and encourages the child to use all limbs and have fun! Unless the CP is more severe, they often don't diagnose for quite a long time because many of the "symptoms" can also be other things especially relating to prematurity. Because of the time spent in an incubator, not curled up, prems often have dodgy trunk tone (my physio's words) and can be quite uncoordinated, eg. not bringing hands midline, using full range of movement etc. Although it can be a pointer for CP, it is certainly not a concrete sign. My LO sat at 1, rolled at 1 corrected, crawled about 16-17 months and up until around 1, struggled with her left side a little and didn't "babble" in the traditional sense until about 18 months ish. She is still not walking but is a proficient cruiser and climber! Because physios treat children as they see them, a dx is not as important as getting any help, although often a dx opens doors for that-catch 22! If you have a gut feeling, go with it but try not to be too disappointed if it takes a long time to get any answers. xx

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