Thursday, March 27, 2008
Tuesday, March 18, 2008
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.
Tuesday, March 11, 2008
Monday, March 10, 2008
This was the message Isla had for the family this morning, after her first successful wee in the toilet :D
I know she's 3 and it's late to be toilet training, but Isla's issues with balance have really hindered us in the past, plus the incident with FDC had scared her off the poor little lady.
So, we're in undies, not knickers Mummy, thank-you very much. And Dora ones at that. I always swore that I'd never dress my child in licensed clothing, and now she's sporting not only Dora undies, but shoes too. How shameful.
Botox Clinic on Wednesday (if they managed to find the numbers to fill the day) then Mel's coming over to have a look and see whether we need any equipment in the bathroom for Isla...
Isla's booked in for the 1st of May for Botox, and I'm in two minds about it all. On one hand, it could release the spastic muscles and only help her gait improve more. On the other hand, it may not work at all, and I really struggle with the idea of putting her into hospital and injecting her, the possibility of her needing to go back into plasters, and lose the strength in her legs. It's all too much. I know Michael, Dr L & Dr F wouldn't suggest it to us if they didn't think it was going to be beneficial, and I know that they have great expertise in this area, but at the moment, my heart is in charge and I feel like just bundling her up in my arms and running far, far away from everything medical.
The Spastic Centre have been calling, they want to have Isla back in the older group this year, and I have no idea what to do. In the group she used to be in, she was the most advanced (I can't remember if she was actually walking at the stage) so we received the least amount of "attention" from the therapists, and Isla doesn't particularly like the group sessions either...Decisions, decisions.
Thursday, March 6, 2008
These past few weeks I haven't stopped, it's been go go go around here!
We had Ian's cousin's wedding 2 weekends ago, Allison's 30th last weekend, a 40th this weekend, plans with friends the following weekend, then Easter and Ian's Mum's bday the weekend after that, then we move house the weekend after that. Add in the physio, OT and Botox Clinics, the extra shifts at work, a quick trip to Terrigal, Isla starting a new Kindy - argh! We should manage some time to ourselves somewhere around April!
Isla has been wonderful with all the goings-on, even had her first sleep over ever at Nana's place (my Mum's) the night we went to the wedding. Much harder for me than it was for her, even though I've spent nights away from her she's always been with Ian, so it was a big step for us to have her sleeping away from the two of us. From all reports the two had a great time, and Mum is still exhausted!
We spoke to Isla's OT, Mel, last week who said that she expected Isla to come out of the assessment a few months behind, but, amazingly, is in the normal range. I am so excited, it's probably the first time Isla's had an assessment and the word "normal" has been used!
Last night (wednesday) Ian, Isla and I went to Terrigal to catch up with Bron, Andrew and Cooper while they were in town for Coops' ABR. I can't get over how improved Coops is now, his posture, his vocabulary, his stability, it's nothing short of amazing! And, he's crawling around, such a beautiful sight! Bron looked beautiful, sporting a gorgeous little bump *wub* Here's a pic of Gorgeous Cooper!
Allison's 80's inspired 30th was a crack up, I have a tonne of pics, none of me, I really should have got one with Allison in her feral pink legwarmers...there may be one floating around somewhere.