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.

1 comment:

Annicles said...

It is disappointing but as the possiblities narrow you will start to see the way ahead. I would feel just like you - I would have to change something to give the possibility of improvement. To continue would not be an option, particularly having seen Holly have huge seizures. Once seen, never forgotten.