27 April 2011

Tiny Chat

If you scroll down a bit you'll find a list of "Other cool stuff" and on it you'll see my friend Lydia's blog "Autistic Speaks" which is always a good read as she is very good at putting her written word across. Now thanks to tinychat.com you can have a good old chin wag with her here

24 April 2011

Choppy waters ahead...

Over the next two weeks we have some important meetings and decisions to make.

We have an appointment with the neurologist regarding Scrumpy, the VNS and where we can go now. Most likely place is Dundee to have a chat with the surgeons but you never know, he might have come up with some thing we haven't tried yet. I live in hope but I'm not holding my breath. That part happens every five days when we wait in trepidation for the seizure to happen. The good thing about increasing the medication is it has given us an extra day (at the moment) between seizures but the down side is it's another bad day spent on tenter hooks waiting for it to happen.

The other big meeting will be with school regarding Bear. You'll hear me giving it to them with both barrels way beyond the Highlands. I'm not a happy mummy.

For some time we have been waiting for the "Please don't bring her back" or "We don't think we're the best place for her" that her pre-school days were peppered with and just before the holidays we took a step nearerwith a note from one of her teachers saying she wasn't prepared to be responsible for her safety. Like I say, I am not happy. At all.

10 April 2011

When Two Become One

Well, we have been to see the dietitian regarding Ketogenic treatments (It's not a diet, by the way, it's a metabolic intervention) and it's not looking good. The specialist dietitian and her local counterpart, who is helping her in our area, (specialist covers the bulk of Scotland!) were both lovely. Helpful, supportive, talk to you like you know whats going on and consider the wider picture. Everything you want in a professional medic. The thing I like most about them is they said it how it was with no tip toeing, and it's not going to be possible to use the treatment for Scrumpy.

The dietitian took a good look at the food diary we kept for 5 days and said we had one option - the MCT version - which would involve Scrumpy drinking a specific manufatured oil diluted in milk four times per day. Scrumpy doesn't drink milk. In fact she doesn't really do dairy aside from soft cheese on a roll or, more recently, melted cheese on a burger or pizza and of course ice cream.

Her advice was that in her 17 years experience it would not be possible to get Scrumpy to give up food and start the treatment. Most foods used are wet - Scrumpy doesn't do wet food. There's a lot of cream, eggs and milk - none of which she eats. She would only be abllowed portion sizes of approximately 12 blueberries - she might not eat vegetables but she'll happily munch her way through half a pack or blueberries. She's used to having free rein with the fruit bowl.

Her level of autism means she has the understanding that she can't eat her usual carb-laden diet anymore but not the reason why. And then of course we have the Bear factor..... I left the meeting with my head spinning with information over load and the dietitian's mobile number and email address. Hot Hubs had to stay home with Scrumpy as she had a seizure that morning. In their absence I stopped off to pick up a nice lunch to take home for the debrief. I managed to make some notes so I was hoping I hadn't forgotten too much.

Scrumpy's seizure pattern is now one tonic clonic every 5 days with a 2 day lead up so 3 days out of 5 she's not up to much.

We're waiting for an appointment to see the surgeons regarding the VNS option and in the meantime her medication has been increased. Again. One more increase and we can increase no more.

I called this post When two become one because to me the option of leaving her as she is just isn't. I feel driven by a parent's need to make everything right, to protect my child and we won't give up. Ever.