Tuesday, March 18, 2008

What to do....???

We saw the Rehab specialist/Botox Dr on Wednesday, although he never calls it botox, always uses it's proper name, "Botulinum Toxin".

Isla isn't improving, and he's suggested we go ahead with the Botulinum Toxin injections in May. He's held a spot for her since last year in the event that she would in fact, require the injections. They've made the decision to do them under sedation, not GA or Nitrous Oxide as they first planned (laughing gas) because it would make the whole event even more traumatic for little Isla.

So, after hearing for at least 12 months, possibly 18 months that the Botox will be so beneficial for Isla etc, the Dr informs me that in America, the FDA is holding an inquest into the use of Botulinum Toxin after several children died after being injected with it, to treat lowe limb spasticity (which is what Isla has). He also said that it was highly likely that Isla will have to go back into plaster, which would absolutely break my heart, and hers too. Another draw back is that it may cause bowel incontinence, which would set her back in her toileting.

I was given the admisssion forms to fill out, which I've done, but I haven't been able to send them in. The Dr mentioned that as far as he's aware, the children who died in the US were given the botulinum toxin via IV and in much larger doses than what he uses here in Australia, which may be the reason for the fatalities, although he admitted to not knowing all the facts surrounding the case.

From what research I've been able to do so far, it seems that the Children's Hospital's in QLD have stopped all Botox treatments until the FDA release their findings. Isla's Dr has also said that he's happy to postpone the treatment until that same time so we can make a more informed decision on whether to proceed with the injections or not. To date, no deaths have been reported in Australia from the use of Botox for lower limb spasticity.

The deaths were caused by botulism, whereby the botulinum toxin had spread beyond the injection site and caused paralysis of the mouth, tongue and respiratory system. Very, very scary to think about this posibility.

So, I'm thinking the best option for now at least is to say no to the injections, I am going to have to discuss things with Michael and Dr L, and see what other suggestions they can give me to help Isla. She's having problems with her knees now too, they're starting to turn inwards, which is a worry, and Dr L says that her feet are still very bad and that she'll be complaining of bad foot pain when she's older, my poor little girl. She's already complaining of sore toes all the time.

I have to book her in to see the Orthotist again, she's outgrown another pair of orthotics. So much for them lasting 12-18 months each. This lot have only lasted about 8 months (although truth be told, she has been unable to fit in them properly since just before Christmas.

Good news on the OT front though, Mel is stoked at how well Isla is doing.