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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:
Original poster
MABS · 04/01/2006 18:49

sorry about the crap spelling! bit emotional tonite .

OP posts:
lou33 · 04/01/2006 19:02

mabs, go and see dr nick cavanagh at the cheyne centre for child development, or ask his secretary at the chelsea and westminster hospital, in london, for his private appointment number

he is fantastic

Original poster
MABS · 04/01/2006 20:00

thanks sooo much Lou, will call tomorrow.

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lou33 · 05/01/2006 15:27

Any luck?

Original poster
MABS · 05/01/2006 17:29

called them, and they should be calling back.xx

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lou33 · 05/01/2006 20:35

That's great, we have known him for over 12 years, he is v v good, and has a lovely demeanour

Original poster
MABS · 06/01/2006 11:32

spoke to the man himself, he has given me some advice about a doc down here. Otherwise we'll go to him, but he warned it'd cost thousands due to all the new scans he would need to do

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lilianna · 06/01/2006 11:34

hi lou is right he is a great dr

lou33 · 06/01/2006 11:36

Oh dear at the cost!

Did you like him though? His recommendations have always been good for us. He used to see dd1 for her hydrocephalus before he saw ds2, being a neurologist, but he specialises in cp

Original poster
MABS · 06/01/2006 11:41

I thought he sounded lovely and he was very helpful. Thanks hun xx

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lou33 · 06/01/2006 11:43

Anytime x

lou33 · 06/01/2006 11:43

lilianna, you know him too?!

butty · 06/01/2006 11:45

Sorry to but in mabs, just wanted to ask a question.
My ds is now 3 and has severe GDD, he is incontinent and prob will be for a very long time.

I have heard that you can get free nappies from the age of 3, is this correct and if so how do i go about it??

If this is incorrect question, accept my advanced apologies.

Butty.xxx

lou33 · 06/01/2006 11:50

Good point butty, it was 4 where i am. Ds2 has them for nighttime and long journeys, or being out of the house for a long time, because he is toolittle for the disabled toilets still, and can't balance on the seat.

Mabs' ds is older tho, so i don't think he would be too happy at having to revert to nappies in the day, esp at school.

I do hope this gets sorted for him mabs x

butty · 06/01/2006 11:53

Hi Lou33,

Sorry, but do you have any idea where i apply for them as i have no idea???

Butty.xxx

lou33 · 06/01/2006 11:53

Health visitor!

Original poster
MABS · 06/01/2006 11:59

thanks lou hun, that's the prob - he WONT wear a nappy as he's a big boy and has been dry for a year now!

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Original poster
MABS · 25/01/2006 13:36

saw paed today, not great really. Now referred to Gos for botox and need to do spinal mri to see if any probs re the incontinence. Never stops eh....

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jenk1 · 25/01/2006 17:25

Mabs my dd has mild CP in her left side, do you mind if i ask you what an afo is and how old was your DS when he was toilet trained?

Thanks

Original poster
MABS · 25/01/2006 22:37

afo is a splint he wears on his left foot up to knee. He was dry in the day when he was nearly 4. Don't mind you asking at all.

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buzylizy · 25/01/2006 22:39

my dd wears them on both feet(stops her feet turning out when weight bearing)

Original poster
MABS · 16/03/2006 18:58

He had the spinal MRI on Monday and I have today been told that they are looking for a tumour on the spine or mild spina bifida. I'm in bits and can't believe it. Apparently the 'best' we can hope for is that it's the bowel control area of his brain has damage in too. Results on Wednesday...

OP posts:
ntt · 16/03/2006 19:05

Oh crikey mabs what a shock. I really really hope it's good news on Wednesday. What a horrible week you're going to have Sad

Original poster
MABS · 16/03/2006 19:08

Thanks ntt, to be honest i'm doing the 'if i ignore it it'll go away' male approach!

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noddyholder · 16/03/2006 19:23

Mabs just seen this How are you?This is such a shock for you I'm sure after all you have achieved with him.What is the next step after that?Could they be wrong?Text me if you fancy a chat although have to go in to the sussex for a couple of days and not sure when but anytime I can xxxx