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SN children

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

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Original poster

This is it, surgery time!! :(

72 replies

SparklyGothKat · 16/05/2006 14:26

Just got home from GOS with DS. The botox didn;t have the effect we hope for, though he is doing well. We now are being referred for tests as to his suitablity for surgery. It will be mutli-level surgery, with his hips, knees and ankle muscles and tenons all being released. It will be a 12-18 months rehabilation period afterwards. :(:( always knew this would happen at some point, its just come too fast for my liking!

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Original poster

SparklyGothKat · 22/05/2006 00:19

wow lots of problems then, I didn;t realise (note to self, must visit SN more often lol :)) DS wears full length splints, up to his knees, he also wear gaiters. DD1 wear small wrap around ones up to her ankles. Whereabouts are you? I'm sure DS wouldn't mind meeting with your son to discuss splints :):)

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Blu · 22/05/2006 00:20

Hi ruba.
No expert, from from what I understand, Botox has made a brilliant difference in enabling kids with CP to put their feet to the floor, and really works!

Blu · 22/05/2006 00:21

SGK - we're in S London...I sort of know what area you are in if you live close-ish to Misdee.

Are you going to the summer picnic?

Original poster

SparklyGothKat · 22/05/2006 00:23

rubadubdub My Ds has had 5 lots of Botox injections, it did work great the first few times but the last 2 have not had the effect we wanted. Botox works by killing the nerve endings that are receieving the faultly messages, therefore giving you time to work the muscles with physio. The effects last between 4-8 months. The nerve endings will regenarate and thats why its a repeated process. Generally the child with retain some of the effect of the botox. Its a very good way to relax the muscles. :)

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Original poster

SparklyGothKat · 22/05/2006 00:24

Blu, I live 5 minutes from Misdee :)

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Original poster

SparklyGothKat · 22/05/2006 00:25

summer picnic?? where is it?? when is it?? lol :)

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Original poster

SparklyGothKat · 22/05/2006 00:29

rubadubdub you can read about Botox \link{http://www.scope.org.uk/information/factsheets/\here} :)

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Original poster

SparklyGothKat · 22/05/2006 00:30

look for Botulinum Toxin A factsheet.

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rubadubdub · 22/05/2006 00:36

sparklygothkat do u go through your physio or consultant to get the botox and are they only suitable for certain types of cp, my dt is so upset at the moment she really wants to walk she just hasnt got the balance to do it alone,its so sad sometimes, she wants to run and jump like her older sister and cant understand why, she had a stroke at birth.

Original poster

SparklyGothKat · 22/05/2006 00:39

we were referred to Great ormond street by the consultant, who then assessed him as to suitability. Botox is generally used on children with Spastic (hate that word) cerebral palsy. DS has spastic diplegia CP, and it worked great when he was smaller. I would ask your consulant to refer you. Its worth it.

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rubadubdub · 22/05/2006 00:45

thanks for the link to scope, ill look t,morrow .yes dt has "spastic" cp, we are under oxford, , is there any side-effects?

rubadubdub · 22/05/2006 00:47

so when it wears off they are usually better off?

Original poster

SparklyGothKat · 22/05/2006 00:52

generally the child will retain some of the effects. DS has more movement in his right leg now then 4 years ago, he can put his foot directly onto the floor and his leg feels very normal :) Can;t say the same for his left leg tho.

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Original poster

SparklyGothKat · 22/05/2006 00:53

anyway i'm off to bed now, hope you get a referral :)

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rubadubdub · 22/05/2006 00:54

anyone ever feel slightly alone sometimes, when my dts sick i can be housebound for weeks and in and out of hospital, people that know u dont seem to realise how hard it can be at times, moan of the day, ha

MABS · 07/06/2006 19:24

Hiya all, need reassuring messages please. Ds saw new consultant on Monday and he is scheduled for botox next Tuesday! aaarrrggghh

beep · 07/06/2006 20:30

we had good results from the first two lots of botox.

Blu · 07/06/2006 21:15

Mabs - last time we were in hospital with DS about 4 kids on the same ward were in for Botox. One was a junior tennis champion - and the Botox was enabling her to play. before she had not been able to put her foot down flat at all.

Most were quite calm about the injections - lots of .magic cream' etc. One was very distressed, but i thnk he would have been distressed if he had had his hair combed that particular day.

MABS · 07/06/2006 21:31

thanx girls

MABS · 15/06/2006 10:15

all done on Tuesday by the fabulous Dr Fairhurst. DS didn't have any sedation and was totally cool with it all. think i can see an improvement in his foot mobility already!

Blu · 15/06/2006 11:12

Mabs - that's really good news.

MABS · 18/06/2006 19:11

just as well he's ok. I fell over in Barcelona yesterday and broke my foot.

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