Anyone with a DC that has had botox for medical reasons?

[Carikube]

DD2 (13m) has always tilted her head to one side; GP referred us to Paed. who said that her head is fine but he thinks her neck is a bit 'tight' and has recommended physio. He also sent her for a neck x-ray and he and the physio (who came to the appointment as well) talked about possibly giving her a botox injection to help alleviate the problem.

I'm not totally comfortable with the idea of botox, given what it is, but wondered if anyone else's DC had been treated with it and how it had gone to set my mind at rest...

DD hasn't been given botox - yet. She has mild CP and Botox is often used to help with treating it. From what I understand, Botox works to relax a muscle temporarily while you do intensive physio, strengthening the surrounding muscles and allowing a good posture to form. After a few months the muscle tightens again, however, the physio should prevent it from causing the same problems.

This is my understanding. I may be way off the mark! DD will be having botox at some point in the not too distant future.

Yes, we've had it 4 times. DS has cp. Am on phone now so can't type much. Will return to thread for longer answer later! If I forget or can't find it feel free to pm me!

Worth also trying osteopathy, esp cranial type as they can release tensions like that, could have been something that occurred pre-or at-birth.
There are also things like epsom bath salts that have relaxing effect on the body generally.

Osteo not usually on NHS but u don't have to sit and wait for months, osteo helped me and my ds more than mris/physio done in NHS and u don't need x-rays. They also look and work to solve unbalances across the body rather than just localised problem.
I was tilting head for years after a a particularly prolonged and severe ear infection and osteo has fixed it.

Thanks Galena for the prompt - I had forgotten!

DS has had botox four times, the first time was excellent, and the other three were good in varying degrees. Galena has described how it works accurately - it kills the muscle though rather than relaxing it, so the time you have to work is the time during which the muscle re grows. The body can become accustomed to it though and it works less effectively over time, also for some it never really works in the first place. DS has had it in his legs, mostly calves but also sometime hamstrings or groin. We have always paid for extra physio starting 2 - 3 weeks after the injections as even though we get extra NHS physio afterwards it is not enough IMO. Is is done under general anaesthetic (or should be anyway, some places try to fob you off with sedation, but it's a big needle and the need to be very still - the GA is light though.)

We will not be having any more botox as our consultant has told us that each time you give it you loose a small amount of strength permanently in the muscle. Therefore you have to weigh up the values of a period of time without the spasticity with a minor long term loss of strength. In our case the last time was enough, and looking back DS should probably only have had 3 goes. However, it is different for every child, those with CP always have issues with weakness as well as the spasticity so this aspect of Botox is more of a concern for those with CP as well rather than NT children.

Carikube if you DD's neck is that tight then botox may well help, however I would also second nightcat's suggestion of osteopathy, especially cranial osteopathy. We have used that to great effect on both my boys and I would love DS to continue having it, however there is only so much we can do!

I hope that helps both of you a bit, but I'm happy to answer more specific questions if you have any.

It was interesting to read this as I'm going to have botox in the muscles which are causing my hand contracture. Hairy - do you know if they have to guess how much to give, or is it well known ? I just need to weaken that muscle enough that my finger doesn't stick up, but leave it able to extend

CMOT, apols for barging in, but botox seems to treat symptoms not the cause and it's unlikely to be perm.
Some mineral deficiencies can cause contracting muscles, eg Mg.

Nightcat - the contracture is due to muscle imbalance as most of my hand is paralysed, and this muscle is unopposed. The idea of botoxing it is to see whether the finger can be brought back into use, or whether it would need tendon lengthening/muscle cut. Sort of a way of assessing the surgical possibilities in my complex arm injury

I was going to say in previous answer but dcided not to, the amount of Botox you can safely have each time is a set amount per kg of body weight so they need an up to date weight. We have previously had the full amount distributed Between 5 sites, although sometimes it has-been between 2. That has been up to the surgeon.

sorry to hear about your hand CMOT :( is that due to a physical nerve damage?
(my ds currently having osteo for his foot/leg/spine and that's all via nerve channels)

Thanks Hairy. That's really interesting as DD is likely to have botox for CP at some point. Would you mind (if I remember) if I pm you nearer the time with any questions? Thanks!

Sorry have been away from the pc for a little while so have only just caught up. Thanks for your answers to this - it has been really helpful. Our initial reaction to this is that we will try and avoid it if at all possible as we don't really fancy putting DD2 through a GA etc. We have another physio appointment in a couple of weeks so we will see how that goes.

It was a cranial osteopath that originally recommended that we try and get referred for physio as he says that he has done what he can but now she really needs to get the muscle in her neck looser (and on a side note, the paediatrician physically winced when I said that we had been to see a cranial osteopath as he said that in his experience 'they're an expensive waste of money' - I didn't get in to a discussion with him on this but as we had also taken DD1 after her traumatic birth I have nothing but praise for ours!). My GP sent us to the paed. as well as referring us for physio as he wanted a second opinion. Now we are just waiting to hear from them re her x-ray to see if there's anything else they can say.