hi 1st time on this web site,been reading a few messages and i notice a few of you with kids that have cp.i'd like to tell you about my ds and our predicament-
in pregnancy it was picked up that ds had pilmanary stenosis(sticky heat valves)and slight swelling of the heart-which is normally a sign of downs.i had an amnio and numerous other tests,but they could not find anything wrong,this left doctors puzzled!.at 6 months old gosh told me his heart was functioning normally and to take him home and forget about it,which we did and his heart is now fine(just a very slight murmer).
at 7 months old at his 7-9 month check hv noticed a stiffness in his legs when doing the clicky hip test.we were referred and told he may have cp.he had an mri scan,and at 14 months old we were told he does have mild cp.
then out of the blue a few months later we got a letter from gosh saying the had viewed ds scan films(2nd opinion)and they thought them to be normal-confused?-we were.
ds development as follows;
still not sitting without support until 11 months.
did not bear any weight on legs until 14 mths.
if supported at 16months could take small steps,but we had to tap the back of each leg,as if to prompt him what to do next.
did not learn to turn without falling in sitting position until 18.
at 19 months he learnt to bum shuffle.
he is now 23 months and can take steps if you hold his hand,but he has no balance,and cannont stand without support.
he has never crawled, in fact he still cannot roll over, and is unable to pull to stand.
his legs are very strong and he can move them in any way he wants.
i do sometimes notice tight abnormal muscle tone in his inner thighs,especially when tired or very upset.
his peadiatrician thinks it is unlikely,that he has cp,and thinks he has developmental delay-i could have told him that!
he has phisio every week and they seem to think he has a problem with confidence-but i am not so sure.
god!!i hope i havent sent you to sleep!!
has anyone had any similar experiences with mild cp-what do you think!!!!!!!!!!!!!
thanks, i feel much better just for getting this down.