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Original poster

stroke in utero ???

28 replies

mamof3 · 19/04/2009 09:50

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

OP posts:
5inthebed · 19/04/2009 10:29

Hi Emma, welcome to the SN board. I have no experience with CP I'm afraid, but just wanted to welcome you. There are a few people on here who have DC with CP who hopefully will be able to help you.

There are a few charities who might be able to help you? Hoping someone on here can point you in the right direction.

jjones · 19/04/2009 10:33

Hi Emma, I don't have any experience with CP but there are quite a few ladies on here who have. Welcome to MN they are a friendly bunch.
Have you tried family fund they may be able to help or point you in the right direction.

sarah293 · 19/04/2009 11:08

This reply has been deleted

Message withdrawn

Original poster
mamof3 · 19/04/2009 12:12

hi all thanx 4 replies. we dont get the family fund as we dont meet any of the criteria e.g we dont get dla, we havnt actually applied for the dla as we both work and sum1 mentioned that its like tax credits theres a certain threshold u have 2 be below i order to claim dla and my partner on a good wage so we will probly get refused.
wat r the other charities u mentioned?x

OP posts:
Phoenix4725 · 19/04/2009 12:16

nope dla is not means tested benefit so I would apply if i was you

LottieDugalo · 19/04/2009 13:31

My dd had a stroke inutero, it was however a massive stroke and the blood supply to her brain was completely cut off meaning the brain that had developed was reabsorbed and she is left with fluid filled pockets of csf instead of brain tissue. Sounds like your ds is doing really well DLA isn't means tested, CA but you don't need to apply for both, worth a shot x

Original poster
mamof3 · 19/04/2009 14:03

thanx 4 replies, if u dont mind me asking lottie at wat stage of ur pregnancy did u find out abpout the stroke? how is she now ?
i am consiidering applying for the dla x

OP posts:
madmouse · 19/04/2009 15:20

hiya welcome!

My ds has hemiplegia too.

If you want more info on splints you may want to post again with the splint thing in the title. Not everyone has the time to read everything.

And please do apply for DLA, nothing to do with your income. It is a nasty form to fill, but ds (14 months) gets £200 a month. it would pay for your splints!

Hangingbellyofbabylon · 19/04/2009 15:29

Hi Mamof3 - my dd had a stroke in utero - sometime in the days before she was delivered at 35 weeks. She was originally diagnosed with right-sided hemiplegia at 13 months old and then the diagnosis was changed to diplegia with arm involvment as she got older and it became apparant that both legs are involved. My little girl is now 3 and walks really well with a walking frame. We are actually going to Dorset Orthopaedic next month to look at the SAFOs as her current splints are pretty bad. Like you the cost is scary but I have contacted the charity BDF new life and they say that they would consider funding for SAFOs. So we going to do the assessment and see if they might suit her.

Have you been in contact with the charity Hemihelp? - the forum there is very active and there's loads of useful info. I'm still quite involved with them as dd was originally diagnosed with Hemi herself.

The other thing is that have you heard of the Bowen Technique? It's an holistic therapy and lots of hemihelp members have found it has really helped their children. Again there's loads of info on the hemihelp forum.

And for DLA - look at Cerebra - brilliant info, we followed the guide and were successful in our application.

Good luck and sorry to bombard you with info and links!!

AAW · 19/04/2009 15:43

Hi Mamof3,

Just wanted to say hello and welcome you. DS is 3 and has hemiplegia due to birth injury. He sounds very much like your DS, he keeps his left hand fisted and left leg is also shorter than right. He wears an AFO splint and I too looked into alternatives so will follow this thread with interest.

Do you mind if I ask does your DS bite his affected hand? DS is going through a terrible stage of biting his left hand, partly due to frustration, nothing I do seems to help with this..he had yet to break the skin but this seems to be getting worse and I would really like to try and help him break this habit before he injures himself (sorry hijack over!) x

Original poster
mamof3 · 19/04/2009 15:54

thanx 4 replies,
madmouse thanx 4 encouragement to apply 4 dla, going to fone up 2moro 4 forms,
hangingbellyofbabylon (bit of a mouthful lol)
thanx 4 the links i will check them out, do u get the family fund also ?
aaw my son absolutely despises the afo hence getting fitted with a nite splint but we found the night splint far to wide and his foot kept lifting up at least 2 inches, physio said to pull it a bit tighter which we did and it left an awful red mark which lasted for 8 hours after we took it off so thats a no no atm as well. at present he has insoles in his shoes and a raise on his left shoe and should but refuses to wear the afo day or night !!!!!!!!!!
he often bites himself on both hands and arms but i dont think its related to the hemi, i think he does it to try and blame his little sister !!!
if u dont mind me asking, do u receive dla for ur son ??? and has he had a raise on his shoe ? wat about his arm and hand? r they shorter on 1 side?
please dont think im being nosy lol xx

OP posts:
PheasantPlucker · 19/04/2009 16:12

Second vote for Hemihelp here, an excellent organisation that gave us loads of support when dd1 was initially diagnosed with left hemiplegia. (now the diagnosis is more diplegia (both legs invloved, not walking unaided at 8) and with very little use of left hand and arm, which is much shorter. My dd sustained a brain haemorrhage shortly after birth, having arrived 3 months prematurely.

Do Cerebra help with funding for AFOs?

Welcome to the board!

HairyMaclary · 19/04/2009 18:59

Just adding this to my list of ones to check I'm on as I'm interested in the silicone splints also. HBOB can you report back when you have been? Ds has both day and night splints, both legs, and while he has been very good about them for nearly 2 years now we are beginning to meet some severe resistance! Especially to the night ones.
I just can't see how a silicone splint can do the same job as a rigid one when there is a significant level of spasticity, but would be very keen to see if it is possible!

Original poster
mamof3 · 19/04/2009 19:27

www.dorset-ortho.com/
this is the website of the dorset orthopaedic clinic if sany1 is interested
x

OP posts:
Hangingbellyofbabylon · 19/04/2009 23:27

It's great to see how many people are here on this thread. I'm really pleased we haven't had to go down the route of the night splints for dd yet, she'd go mad I reckon!

I really would urge any of you to look at the Bowen Technique. It has totally changed my dd's arm function. I have trained myself after seeing the effect on dd and now treat her regularly. I am also looking for others with hemi/CP to treat as I intend to specialise in this area. If anyone is able to travel to Bournemouth I am looking for children to treat (without charge). I've just started treating a 19 year old with Hemi and the results have been amazing. Happy to chat more to anyone who wants more info, don't want to take over mamof3's thread. .

Hangingbellyofbabylon · 19/04/2009 23:29

some links here for more info on Bowen:

www.board.hemihelp.org.uk/index.php?showtopic=2084&st=0

www.board.hemihelp.org.uk/index.php?showtopic=2174

Original poster
mamof3 · 20/04/2009 08:30

HBOB we r in newcastle so bournemouth a bit out of the way which is a real shame.
its not so much his arm , it is his fingers which have very low muscle tone , his "party piece" as he calls it is to bend his fingers rite back !!!!!!!!!!!
i joined hemihelp a while back but keep 4getting 2 go back on ....
also goodluck on the practising of the bowen technique.x

OP posts:
Hangingbellyofbabylon · 20/04/2009 09:47

yeah newcastle is a bit of a way!! .

Original poster
mamof3 · 20/04/2009 20:15

lol, does any1 else get any grants that could maybe fund the silicone splint ?
x

OP posts:
Hangingbellyofbabylon · 20/04/2009 21:09

it depends on finances really, to get family fund you need to be in receipt of certain benefits. BDF newlife is good, perhaps cerebra although the application process is very long. Also to get funding for dd's trike we wrote to the local lion's club and round table and were successful with both. I think a really good letter and some photos always help but they also like to have something tangible to look at like a brochure and quotation.

HairyMaclary · 20/04/2009 21:20

HBOB,
Are you on TTR? We are not too far fro bournemouth and I would be interested in the bowen technique. I only have a very identifiable email address and no CAT but am on TTR. I would love to talk to you some more about it. Thanks!

Hangingbellyofbabylon · 20/04/2009 22:39

Hi Hairy, I had no idea you were anywhere near us! I'm not on TTR - have asked a few times but not sure how to get through the door! I am on Facebook, 2shoes know who I am so you could ask her maybe

Original poster
mamof3 · 21/04/2009 10:15

wat is ttr ????x

OP posts:
PheasantPlucker · 21/04/2009 11:08

HBOB I would have loved to have seen you with dd1, but we are a bit too far away (SW London)

We got involved with the Cerebra/GOSH trial of cranial osteopathy last year (or was it the year before?) which was very interesting.

Good for you for qualifying to practice.

AAW · 23/04/2009 20:23

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