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   Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.

anyone know about cp??

(16 Posts)
Hi,
wonderd if anyone could help my DD is 17months she has been refered to hospital for developmental delay and also squints in both eyes. shes not yet standin,walking or crawling although she does bum shuffle and can say around 5 or 6 words. if i try to lift her to stand she doesnt bear weight on her legs and her left foot turns inshe was also late to sit just before her first birthday. had an op for pyloric stenosis at 4 wks and whilst in hosp a dr mentioned in passing that she doesnt use her left side as much? after gooleing symptons kept coming accross cerebral palsy. do these symptoms sound fermiller to anyone? thanks for reading Guys.
Add message | Report | Contact poster By Tue 07-Jul-09 19:58:11
yeah thanks i try not too compare, she has two cousins same age but even though they can stand,walk ect.. my dd talks way more than them both. it doesnt matter to me either way. Just glad i have her. Its more a case of wanting to know if it is something she will need help with. thanks for answering guys means alot to me. DH never really takes my concerns seriously. deep down he knows just doesnt want to admit something is'nt right. (I Think)
lucymum The most important thing is not to compare your DD against other kids of the same age, it'll make you feel worse and it's not fair on your DD!

I found it really helpful to write down every little thing DS did (like say 'monkey' one day), it's really useful to show HCPs and makes you feel good when you read it on those bad days.
sounds like she is doing pretty well so hold on to that.Walking is no big deal really. Hand function and speech are the important things!
Add message | Report | Contact poster By Mon 06-Jul-09 16:10:34
Thanks guys guess its just a waiting game. Have to see what DR says.. xx
OP, DS1 was diagnosed at the assessment, we've never had an MRI. He started walking at 3 and is starting to talk now. He attends a 50/50 SN/mainstream nursery and is very happy. His weakness is mostly in his legs but he's a very sweet boy and adores his baby brother. We get disability living allowance and mobility allowance for him, and attend physio, orthotics (feet) and speech therapy appointments.
Add message | Report | Contact poster By Mon 06-Jul-09 09:15:50
she sounds lovely!
dd2 has cp (originally dx spastic quad, now athetoid) and has one side stronger than the other (she did not start using her right side functionally until later) she also has an alternating converging squint and has worn glasses since tiny (she is 5 now). she was born term but was v poorly and so has had therapies various since birth. we were originally told that the squint had nothing to do with her other issues btw - i didn't believe it then and no-one else does now grin
the fact that your dd has some speech and some functional movement is brilliant, whether she has cp or not, and it is likely that she will continue to develop, even if it is a little slower than her peers.
dd2 did not have any speech until much later and we were told she was unlikely to to be verbal. she had a standing frame and then a walking frame, and now walks and talks and goes to mainstream school with a little help. all kids with cp are totally different and i have learnt it is impossible to foresse the future (even for the doctors lol) and your dd may have a completely different developmental path to anything discussed on tinternet!
mri's are a useful diagnostic tool, but again, can't be relied upon to predict ability.
hopefully your appointment with the paed will answer a lot of questions - i imagine that you will get a referral for physio, and a call-back to see how she doing tbh. it can take some time before docs are willing to change a 'developmental delay' dx for a cp one...
One hopeful note is that the longer it takes to get a diagnosis the less severe the CP is IYSWIM. dd has severe quadraplegic CP and has less movement than a newborn. Diagnosed before 3 months. If they are using hands, talking, getting about, its much less severe and there's more chance of improvment in physical abilities cos there's something to work on.
Add message | Report | Contact poster By Mon 06-Jul-09 08:10:11
My DS has CP also, but he was very prem, you are unlikely to get a firm diagnosis until after an MRI although that is not always the case. We knew there was damage from his first ultrasound of the brain at 5 days old so had a working diagnosis of CP from about then, only confirmed after an MRI at 1 year old.

I hope your referral is ok, even with no diagnosis your DD would benefit from physiotherapy and Occupational therapy, possibly speech therapy also. Make sure you ask for these when you see the paed if they are not mentioned, as there can be a waiting list.
Add message | Report | Contact poster By Sun 05-Jul-09 23:29:33
thanks laumiere, gp has referred, we have the appointment 15th august. how long do you have to wait for diagnosis? not wishing anything on DD but rather know than keep wracking my brains. hows your DS doing?
Sounds similar to my DS, he was diagnosed with diplegic CP at 19mo. You can get a referral from the GP.
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