stroke in utero ???

[mamof3]

hi all, thought id post on here about my sons condition 2 see if any1 has experienced the same.
wen i was pregnant wwith my son who is now 6, he had a stroke inside of me caused by a bleed on his brain this was picked up wen i was 26 wks pregnant, as i was only 19 at the time the hospital advised me to have an abortion-fortunately i didnt, i carried on with the pregnancy and had my son by casarean due to me getting pre eclampsia !
i knew from the start my son would have cerebral palsy as the hospital had told me his left side would be affected.
he has left sided hemiplegia. he can use his left side 2 sum extent however his left hand he tends to keep fisted and he walks on his tiptoes, as the weight is not goin through his left foot his left leg is a tiny bit shorter than his right therefore he has to have his left shoe slightly raised, he also wears a splint to stop his tendon tightening, however he does not like the splint at all as it is a plastic rigid splint and he feels like it is like a plaster cast like wen u brake ur leg !
for this reason they have given him a night splint which is neither use nor ornament.
i done a bit research into splint alternatives on the net and found that there is a company in dorset who make silicone splints however the nhs will not fund this and the splints range from £400-£600, i wouldnt mind paying for this but children grow at such a rate that i would end up buying 2-3 a year which i just could not afford.
has any1 else heard of chepaer alternatives or has a child in the same situation with same condtion ? if so would love 2 hear from u
emma x

Hi mamof3,

No worries about the questions I'm the same! DS has a lift in his left shoe along with the AFO and an insole in his right. His left leg is about 1cm shorter than the right and his arm is also slightly shorter. Although we say he is hemiplegic strictly speaking this is not correct as his right side is also marginally affected, it's just that the left side is far more apparent. DS also has GDD and microcephaly. He had a massive haemorrhage which caused the damage to the right side of his brain and also went into hypovalemic shock which affected other areas.

You should definitely claim DLA, as madmouse said you could save it to put towards the splints or put it aside to do something nice with your DS, that?s what I do. If you need any help with the form Cerebra produce a good guide that is really useful x

hi mamof3

my dd1 is 10 and has right side hemiplegia. she has also just been dx with epilepsy

she wears an afo splint daytime, and is wearing a night time splint but frankly she humours us then takes it off when we've gone

i would follow what others have said and recommend hemihelp - they have given us many moments of help and advice, and they organise get-together days which are great

also cerebra - again, full of advice and support. they also gave us a trampoline for ddd1

if youwould like to chat: [email protected]

that's dd1 of course, not ddd1