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Here are some suggested organisations that offer expert advice on SN.


(20 Posts)
sarah293 Tue 12-Aug-08 18:47:00

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sarah293 Tue 12-Aug-08 18:52:08

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glitteryb6 Tue 12-Aug-08 21:43:23

probably by the time he was on 3 x 62.5mg tablets a day it was really noticeable, it did sort of creep up on us as the change was very minimal to begin with, the first thing to go was the stiffness and shakiness and the fact his arm didnt end up behind his head any time he tried to reach out for something.

now on 5 tabs a day he can (90% of the time) reach out his hand to shake and give a high five (of a fashion!) not huge things but a big difference to him.

he has had no side effects from the medication so i just kept it going, upping it gradually and i also noticed a few more word like noises every time it was increased, he now has a few words which he uses with some consistency albeit not every day... juice is his favourite and most used one!

on a few occasions in the beginning when i thought it wasnt doing much i stopped it for a few days and the difference was night and day!

glitteryb6 Tue 12-Aug-08 21:45:09

he still cant turn a page in a book or manipulate a toy or anything but i dont think he ever will anyway but the difference it has made to him is he is much less frustrated than he used to be

Raine3 Tue 12-Aug-08 23:31:28

Hi, I don't mean to butt in but I wondered if you had heard of this ...

intrathecal baclofen therapy

Sorry, I dont know how to do a link and I don't even know if your kids have CP, and the website is from the USA so I don't know if they do it here, but it very interesting.

glitteryb6 Wed 13-Aug-08 08:10:27

yeah we have discussed it with our neuro but ds is still to wee for it, hes 4 and currently weighs 10.2kg, so maybe something for the future but as ds has Dystonic cp it might not do much for him as he isnt really tight until he tries to do something IYKWIM?
although we have talked about botox in his neck to stop the weird dystonic spasms he goes into when strapped in his chair..... head goes to the left, arms to the right, left leg brought up and right leg out straight!
Riven does C do this?

sarah293 Wed 13-Aug-08 08:46:25

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sarah293 Wed 13-Aug-08 08:54:22

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sarah293 Wed 13-Aug-08 08:54:55

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Raine3 Wed 13-Aug-08 11:37:45

To be honest I did not know there were any types of medication that could be taken to 'ease' CP symptoms and as DS is only 2 I suppose he is too young,but it's something I can start looking into (and trying to understand) and in reality compared to some childrens CP he is quite lucky and it could have been a lot worse, anyway like I said sorry for butting in blush I was born nosey and I just can't help myself! grin

glitteryb6 Wed 13-Aug-08 11:52:52

yeah they do seem to prove you wrong in the company of doctors eh?

i would say if shes not sufferring any side effects then theres no harm keeping it going really?

luckily so far ds has had no seizure activity and he seems to be purely dystonic so the sinemet may be having a different effect on him than on C

he goes to conductive education nursery 4 days a week so that has also helped his hand function somewhat, although he couldnt do it before he started the sinemet, the doctor said its like he has to re-learn to use his hands now that they work IYKWIM, still cant work a switch though...well he can for about 10 mins but then seizes up like hes used up all that days dose of L-dopa or something.

ds surgeon is going straight for the button type device rather than the dangly tube, not the normal way admittedly, but this guy is one of the most experienced in scotland apparently, he says its easier to do the button on the really skinny kids and that and the fundo will be done by keyhole surgery so just 5 or 6 wee scars on his tummy to heal, probably looking at around October before it will be done and if im totally honest i cant wait, i have dealt with enough projectile vomit and food/drug negotiations to last me a lifetime! grin

sarah293 Wed 13-Aug-08 19:21:09

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glitteryb6 Wed 13-Aug-08 20:39:06

depends on the surgeon i think, we go to a hospital in Edinburgh where its routine to go straight for the button but in Glasgow they always fit the dangly tube first and leave it in for 12-18months to get the hole established, kind of like when you get your ears pierced and have to keep turning them to keep the hole open IYKWIM? the neuro i speak to from glasgow was adamant that i must have got it wrong but i have since had it reconfirmed twice by the surgeon in Edinburgh who seemed to suggest that his collegues in the west were just behind the times grin

Raine3 Thu 14-Aug-08 01:21:58

He is dystonic/four limb Hypertonic, he can pick things up with his right hand but has a job to let go, he has quite good head control but still can't sit, he does get around on his back but not Necessarily in the direction he wants to go!

sarah293 Thu 14-Aug-08 09:13:55

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Raine3 Thu 14-Aug-08 09:32:00

I would have loved to .... But I am in Northants, I have to confess it would be nice to have someone local who you can relate to, I am going to enroll him at Rowan Gate (Primary school for special needs that has a nursery) for a couple of mornings a week so I'm sure I'll meet some mum's there, but it's very kind of you to offer and if I had been local I would have, so thanks for that.

I have to say I was quite shocked when you said you have not had physio for six weeks!
I thought Josh was hard done by only getting it every two weeks .... and his physiotherapist leaves the CDT next week for a new job .... so I'm already gearing myself up to start moaning about him getting a replacement because they won't advertise her job until she has left.... sorry I know I talk too much !

sarah293 Thu 14-Aug-08 09:43:12

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Raine3 Thu 14-Aug-08 10:01:14

I have to admit when I saw the new post from the lady (Yomell- something) with 20month old DS with CP, I thought how xcan the HA just leave a child who 'normally' would be starting to sit by the age of 7 months and there she is with no idea of how to help him and no support and it makes me so angry ...

Have to confess they are very good here, so I am quite lucky for all my moaning!

sarah293 Thu 14-Aug-08 10:09:48

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Raine3 Thu 14-Aug-08 10:22:11

I don't know how you keep your cool, I suppose you get used to it, I would probably phone up twice a week and ask if they have any cancellations !

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