Botox injections.

[lou33]

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?

Once again questions from me Im afraid... Have today been told ds is an 'ideal' candidate for botox NOW. But waitlist here is 12 months, anyone know anything/where you can go private at all? Very many thanks.

Mabs, Aloha may be able to help point you the right way, she was great for me on this. She did say she had intervewed some doctors.

thanx Lou - have emailed her directly.

After numerous calls, we have an appt for a consultation on Feb 4th at the Portland Hospital. A Paed called Dr Mark Patterson - anyone heard of him ? He was suggested to me by one of Aloha's leads - many thanks to her.

will let you know how this goes tomorrow with ds, when i get a mo...(also happens to be dd's 9th bday!!)

Good luck! Glad it's working out so far.

Best of luck tomorrow
will keep our fingers crossed for you
Andrea

Well here's the update...

Absolutely fab and very patient orthopaedic surgeon said ds not really suitable at the mo for botox, and in his opinion prob won't be ever unless he deteriorates dramatically. He answered all our list of questions and various things about the cp became far clearer than before.

Downside was that he had far more concerns about 'control issues' than we have ever been made aware of before. Also pointed out that his left hand IS affected as he tends to hold it up in a set position whenever he walks. Also pointed out that his foot is starting to turn out again. Sounds ridiculous that we hadn't noticed this, but think denial may have played a part.. He's not keen on the piedro boots and said he thinks that they are just masking ds's condition not actually helping it as daffos would. So looks like the bl**dy splints will have to on again, he hates them so much though.

I am upset that botox is not the answer to our prayers and am gutted about the arm thing, however, I learnt more yesterday than ever before about hemiplegia and am very 'pleased' we went!

Mabs, sorry to hear the botox won't help, but it sounds as though you have a lovely doctor. Did he mention any other form of treatment, like the baclofen ds2 has just started?