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SN children

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Original poster

Botox injections.

34 replies

lou33 · 12/04/2003 14:26

As well as being measured for gaiters, ds's physio said she is beginning to think he may benefit from botox injections. Has anyone else had experience of this? Dh and I are v unsure at the mo, mainly because so many drugs and treatments have been given the ok in the past then come back to haunt with huge repercussions(growth hormones and CJD, blood products and HIV, Thalidomide and morning sickness etc), and it is basically injecting poison. Any advice?

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doormat · 12/04/2003 15:33

I heard about the botox injections in the paper the other day. Seems rather odd to me. I know what you mean about the drugs though.Could you tell me more on the effects of growth hormones Lou33 as my ds has been having them for over a year now but he has improved greatly by this treatment.

doormat · 12/04/2003 15:56

Lou33 dug out the article (you know how us mums like to keep everything that comes up) well some doc in usa tested 250 children with cerebral palsy 86% showed improvement."The anti-wrinkle treatment paralyses muscles and stops spasms.This allows therapists to manipulate and stretch them."The writer of the article is
[email protected]
Why dont you email him and ask him for a copy if not I will send it to mumsnet for you if you want. Hope this helps.

Original poster

lou33 · 12/04/2003 16:13

Thanks doormat. What I meant about growth hormones I would not think applied to you as it was a while ago, but something to do with the way gh used to be made. There were people contracting cjd, and it was linked to the growth hormone they were taking, and it's production if I recall rightly. These people were adults too, so it would have been batches made many years ago. Please don't get scared on my account, it wasn't my intention.

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Original poster

lou33 · 12/04/2003 16:17

Have emailed him doormat, so will let you know if he replies.

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mieow · 12/04/2003 20:43

Hi Lou33, Connor has had 2 lots of injections and has benifited greatly from them.
I don't know what the recent news about them is though, can anyone fill me in???

Original poster

lou33 · 12/04/2003 22:27

Thanks mieow, how long ago did he have them and what difference did it make? there have been articles recently saying that tests are showing proof that botox is beneficial to somt types of cp, apparently there have been some reports in the papers, but I haven't seen any because I only ever get a sunday one.

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SueW · 13/04/2003 07:56

Botox is also used for my daughter's condition, achalasia - her lower oesophageal sphincter (the valve at the top of her stomach/bottom of gullet) doesn't open. Botox is injected into the sphincter to make it 'relax'.

I know our situation is very different to yours but I hope you'll bear with me!

With achalasia, botox is not recommended to be used as a first line of treatment unless someone is not suitable for surgery. There is some evidence that it causes inflammation or fibrosis (scarring) of the muscle fibres which can make later surgery difficult. I don't know whether this scarring would matter to you.

If you search on Pubmed you can find research abstracts covering zillions of studies. I searched using 'botox palsy' (no '' ) and it threw out 177 abstracts.

Do you have an information centre attached to your hospital/health service? In Nottingham we have one which will obtain originals of the articles for parents at no cost so they can read original research and make informed decisions. (It also provides lots of other info but I've used it in the way I mentioned.)

mieow · 13/04/2003 08:01

He had his last lot in October 2002. He had 8 injections in total (in hamstrings and the lower leg muscles, they have a funny name) We saw an improvement within a week and it makes his splints easier to put on. He walks better and he even keeps some of the improvement after the Botox has worn off. He is due to have another lot done in June/July time. We are currently holding off surgery with the Botox.

hmb · 13/04/2003 08:44

The other think to bear in min Lou333 is that you are injecting the botox into the site that you want relaxed, and it binds very well, so it doesn't 'wander off' around the body. The danget of botulinum is that the bacteria infects the whole body and realeces the toxin everywhere, not in the very site specific way that botox is given. To give you an idea of how well it bind, I once worked with someone who had worked on botox in it's very early stages. It was injected into a trout's fin, and the fish killed and the effect on the fin muscle examined. The friend would then eat the rest of the fish, she was so sure it was safe! Crazy but true!

Jimjams · 13/04/2003 09:08

the human growth hormone fears are over the ones given back in the 80's- they used to extract it from corpses, and some people have contracted cjd (not new variant- just normal).

However I think the hgh used now is genetically engineered (ie produced by bacteria or fungus or something) so there is no problem anymore.

Original poster

lou33 · 13/04/2003 11:25

Thanks for explaining that Jimjams I didn't mean to panic doormat!

Thank you everyone for your replies,it will help a lot when we come to make the decision.

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doormat · 13/04/2003 11:29

Thanx for that girls I was getting a bit worried. I was told that GH was genetically modified or whatever but I thought there might of been something else. You have put my mind to rest now thanx

Jimjams · 13/04/2003 13:27

@ doormat. I must admit that I do tend to avoid genetically modified soya (more for ecological reasons), but it has to be said that genetic engineering of bacteria or whatever to produce things like human growth human, or human insulin is a bloody marvel!

doormat · 13/04/2003 13:42

It certainly is Jimjams. The idea of Botox to help disabled children is wonderful.

Jimjams · 13/04/2003 13:53

I'd rather see it being used to help disabled children than to remove wrinkles

The fish story made me laugh. I remember when we had our fish disection class- we used trout. A few of us collected up all the left overs (we had one fish each so there was a lot floating around). I cooked a meal for my then boyfriend. After the meal I told how I had sourced the trout- he almost threw up on the spot!

Original poster

lou33 · 13/04/2003 14:32

Mieow, have you posted on scope messages about this before ,as well? Just did a search for botox and a couple of replies sounded like you.

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mieow · 13/04/2003 16:35

Yep. Thats me LOL

mieow · 13/04/2003 16:41

I am everywhere!!!!!!!!!

Original poster

lou33 · 13/04/2003 17:13

You do get about don't you?!

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mieow · 13/04/2003 19:59

I will haunt you!!!!!!!!!!!!!!

Original poster

lou33 · 13/04/2003 22:24

Hehehe, BOO!

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Jimjams · 16/04/2003 09:09

this week's new scientist has an article about botox injections- don't know what its about but thought it might be of interest.....

Original poster

lou33 · 16/04/2003 13:01

Thanks Jimjams will check it out.

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doormat · 26/04/2003 09:16

Lou33
Did that reporter email you about the article. If not let me know? Thanx

Original poster

lou33 · 26/04/2003 17:20

No Doormat he hasn't replied.

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