I am searching for parents with kids with CP to share experiences with therapies medications problem

Hi Angelica,

nice to to read your post.  I have a granddaughter who has co due to medical negligence.  However so far she ha spiced the doctors all wrong since they said she would never survive and even if she did she would literally be in a vegetative state.  She's now 3 and a half years old.  She cannot walk but is mentally Lert and speaks .  We live in the Middle East so we aren't fortunate enough to have good therapy.   We did however. One to the UK periodically where there is so much available for kids with xo and other neurological problems.  I don't know where you live but if it's in the UK there is this amazing centre in North Finchley, London called the Bobath a centre.  They deal with kids and adults with co and other neurological problems.  If you're fortunate you can also get NHS funding.  In our case we had to lay for it but although it was expensive Khadija made great improvement during the four weeks we were there.  The therapists are amazing with th kids too.  Hopefully we will take her back again in the summer.  I've heard a lot about stem cell treatment and am currently looking into this with a clinic in Switzerland.  This is costly and it hasn't exactly been proved to be guaranteed but then when it's your own you will try anything.  Once I hear back from the clinic I will let you know what they say.  I've just sent off her medical reports.  I know they also do this in Germany and although it can be quite successful first time, when it comes to the second lot of stem cell treatment people have said it doesn't work.  Still it's worth investigating.  There are also,places in Canada and China and as I say you will literally try anything.  Whether Elmo just had co or he has other underlying problems the sooner you seek help and therapy the better his prognosis will be.  Early intervention is so important and we here wasted a lot of time once Khadija got back from the USA where she was born just because therapy just wasn't available.  It needs specialist physiotherapy not just the ordinary kind so do your research and I sincerely wish you the very best of luck with Elmo.  Remember medical technology is improving all the time and new remedies are always being discovered.  Never give up.  There is also a wonderful website called Firefly Garden.... Check it out.  There is a bah where you can communicate with other parents/relatives and discuss your fears and even have a moan when things get a bit tough.  It's amazing and I have learnt such a lot from other people using this site who are all in the same situation as me, either as parents or grandparents.  Join it and you ll new look back.  sincerely, wishing you all the very best of luck to you and Elmo.  Kindest regards. Muna.  Let me know how you get in please

Angelica, I forgot to add that Khadija often has a raised temperature.  Shoots up very quickly so my daughter takes her temperature consistently during the day. Nathan when it is very high, it will sudd envy drop down to 35. Something for a while before shooting back up.  Doctors tell us this is normal, just to cover her up well when it drops.  Also my daughter has never had a complet nights sleep.  She wakes us screaming or crying and is sometime hard to settle down again.  Drs say it could be reflux, a dream, a seizure or just wanting a cuddle from her mum as they say co kids are very insecure.  Good luck

Hi

Am a mother of 3 years old girl with cp it will be veey nice to exchange knowledg am recently based in germany but originaly from sudan