lou33 - sparklymieow - or anyone else with experience of botox

[fairydust]

lou33 & sparkly i think i spoke to one of you before about botox for CP?

which ever or both of you it is -do you have any info on it all - with regards to CP.

DD's specialist think's this is the nxt step for her but i'm unsure.

Any help greatly apreciated.

Its mieow you need.

what are you unsure about? i maybe able to help.

faiydust - got an appt on Monday to discuss botox with ds' physio (left hemiplegic cp)...I too have reservations.

misdee - unswure about everything.
mabs - will you please let me know how you get on

Hi, what do you want to know?? DS has had 3 lots of Botox injections. fire away!!

i'm concerned that there will be a temporary improvemnt, ds will get used ti it and then it'll wear off.does this happen? they are also talking about serial plastering for him - any knowledge?

DS has had 3 lots of Botox, the effect wears off slowly, They don't notice the difference though you will when doing physio. Ds has been put in plaster twice and that was the worse thing about it all tbh.
Ds was sedated, after magic cream was applied to the skin. Then when he was sedated, the doctors insert a thin needle into the muscles to make sure they have the correct muscle. Then the Botox is injected, the botox is a thick liquid which has to be injected deep into the muscle so the child will cry out, and this can be distressing for the parents, but the child will have no memory of it as the sedation makes them forget. Afterwards the child is put back on the ward and they will come out of the sedation (they will never be fully asleep) After something to eat and drink and a check up you can go home. The plasters were done at our local hospital and they were changed every 2 weeks. The child can walk on them, with special plaster shoes. The problem with plasters is if they get wet it can make the foot infected and smell. Last time DS got Trench foot (normally seen in soilders at war) and it took ages to clear up.
Botox seems scary, I remember wondering if it was the right thing to do, but as the doctors here wanted DS to have an Operation at age 3 and I said 'no, try botox' we held off operating for 4 years, Ds will need an operation in the next 3-5 years. Unfortunely for DS the botox stopped working after the last lot in sept 2004 so we are not on the waiting lists anymore.

sorry just worked out that DS has had 4 lots of botox, not 3.

Botox kills the nerve endings in the muscles, therefore stopping the faulty messages coming from the brain getting to the muscles, these nerve ending regenate over a period of time.

Also while the muscles are looser, you should give very intense physio to the child, this will mean that some of the effect of the botox will be retained and the muscles will not be so tight. HTH

thanks Sparkly - very helpful

Bumping this in case you didn't see my looonnnnggggggg replies!!

thanks for the spooky we're having a nightmare with the flu at the mo and it effecting dd's legs to we're still in limbo with it all