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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Cerebral Plasy and Incontinence

91 replies

MABS · 04/01/2006 18:48

As some of you know, ds aged 5 has mild left hemi and wears an afo. He's been dry in the day for a year now, tho wears nappies at night. In the past 6 wks he is getting 'poo leakage'in the day. He is getting VERY upset and says it 'just comes out and i can't feel it' Any advice anyone? Our paed is pretty useless, anyone know a good one we can see privately anywhere? I'm gutted about it to be honest.Thanks girls xx

OP posts:

sparklymieow · 20/03/2006 18:51

nope, we only saw the consulant in jan. when I brought it up. She did mention blockage of the bowel but she couldn't feel anything when she examined him. I was telling DS off everyday until I realised it wasn't his fault.. :(

sparklymieow · 20/03/2006 18:55

re: the Botox are you going to the locomotor clinic??

twokids · 20/03/2006 18:57

mabs so glad you had good news.:o

FioFio · 20/03/2006 18:57

This reply has been deleted

Message deleted

monica2 · 20/03/2006 19:31

Mabs so pleased for you, hope next appt goes ok x

Original poster

MABS · 20/03/2006 20:44

Thanks all. Re the botox-we are going to the mobility clinic at Chailey in Sussex on 5 June. We are going to the States late next week til 20 April, so i sorta put everything on hold re the foot. Have been concentrating on the bowels!

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ntt · 22/03/2006 14:41

twokids · 22/03/2006 15:16

mabs Have you been to Chailey before. Don't think I should say but a child I know goes there(didn't say where dd goes to school did I!!)

lilianna · 22/03/2006 15:28

hi girls just need some advice.
ds1 is 3 (4 in november) and still not potty trained. I keep trying but really am not getting anywhere. He says it hurts to sit on the potty with his legs apart and also he has no feeling of needing the toilet. What can i do? he is currently in playgroup who constantly go on about how he must be potty trained by now they don't seem to understand the no feeling part.
And i'm now totally sick of even hearing about potty training. (he has spastic diplegia cerebral palsy)

twokids · 22/03/2006 15:37

I presume he goes to a mainstream nursery. Have you tried contacting the ss ot. There are loads of different types of potty/toilet seats on offer ant they might be more comfatable. As for no feeling I think that is common with cp. With my dd(she@s 10) we are mainly training her to go at certain times. It takes ages but she is dry at night and mainly through the day (as long as we put her on at the right times!) Hope this helps. I do think toilet training a child with cp is one of the hardest things.

lilianna · 22/03/2006 16:35

thanks for your reply. His not even dry at night infact no where near. He is at a main stream school.

ntt · 22/03/2006 16:37

my 9 month old strains a bit when he's pooing - is this a good sign? (sorry to hijack))

ntt · 22/03/2006 16:40

sorry, ignore me

twokids · 22/03/2006 16:56

ntt straining might mean constipation does he/she go alot(atart you own thread??)

ntt · 22/03/2006 17:07

I just posted that on the spur because he's got a dx of possible cp. Then realised what a stupid post it was - what could anyone say to that?? He doesn't strain too much and usually isn't constipated if I watch hat he eats. I meant that because he appears to be "actively participating" in his poo this might be a good sign for future potty training issues.

twokids · 22/03/2006 21:43

Mabs did you see my question about Chailey?

Original poster

MABS · 23/03/2006 07:37

no, not been to Chailey before. Heard its fantastic but am totally dreading it.

OP posts:

twokids · 23/03/2006 09:39

don't Chailey is lovely really friendly which part have you got to go to. Any questions. If I don't know I know people who do. So anything I can do to make it easier Let me know. DD has been there since she was 3.

Original poster

MABS · 24/03/2006 07:02

thanks twokids, do you live in Sussex then? i'll come up with some questions for you have no fear!

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twokids · 24/03/2006 08:43

yes I do do you?

Original poster

MABS · 24/03/2006 16:26

yeah, we are in Steyning, West Sussex. The children are at school in Brighton tho'

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twokids · 24/03/2006 19:05

we are in brighton. so we are nearly neighbours. But poor you being under west sussex. They are so tighT. my friend is in partridge green and has to fight for everything. you might find that Chailey will be able to advise you on the pooh problem as well.

Original poster

MABS · 25/03/2006 15:38

we only moved from Hove 18months ago so he was under the McKeith Centre/Alex til then. Worthing hosp was a shock to the system!

Ds was prem in Trevor Mann at RSCH , you?

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twokids · 25/03/2006 18:31

dd was at the trevor mann only for a week but she wasn't prem just had trouble at birth.
is your ds in mainsteam( sorry you might have said) can you say where?

Original poster

MABS · 26/03/2006 18:18

Yes Twokids he is, tho we were told when he was 8 wks old that he never would be! He is at Deepdene School in Hove and adores it.

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