07 January 2011

2011 here we come...

So much has happened of late I've been neglecting this blog but finding a spare moment I thought I'd let you in on a bit of good news, well, a silver lining at any rate.

As I may have (or not!) mentioned Scrumpy's epilepsy control is going from bad to worse. We've tried every group of drugs and combinations thereof to no avail, she's still having major seizures and absences to the effect she's losing a day a week and the absences are knocking her confidence on her better days. All in all she's not in a good place.

One of the consequences of all this seizure activity is we have stopped doing a lot of things we used to do a lot, like going to the beach, walks in the forest and generally getting out and about. It's all about risk assessment. If she had a seizure on the beach, how would we get her unconscious body to a place of comfort and safety? Well now, thanks to a great Charity called Scottish Epilepsy Initiative, we have an all terrain adult size buggy. So wherever it happens we can retrieve her. We can go back to "encouraging" her round the forest with no fear of hours back breaking trudge home carrying her.

In the meantime we have one last drug to try and then our only option will be a VNS (Vegas nerve stimulation) which will mean a trip to Dundee to get it fitted and then frequent hospital visits locally for monitoring and maintenance. The hope is this would not only control her seizures (all types) but would also improve her mood and confidence. It's a difficult decision to make. Frequently people with autism and epilepsy spontaneously stop having seizures post puberty, but not always and no one can say if Scrumpy will be one of those lucky ones. They can't even give us odds. So, here's the thing, do we put her through surgery and all that entails only for her to spontaneously grow out of it or do we not go for it and have her suffering and retreating further into her shell? It's a tough one.

The only other option for her is to try a ketogenic diet but with a Bear in the house and Scrumpy's limited pallet I can't see that working realistically.

Talking of the Bear - she's in fine form and thanks to a bit of medication juggling we have taken the out of control manic element out of her ADHD. She's happier and able to learn and take notice of things that bring her so much joy like her birds and her books. She's still a complete monkey and will try to get her own way even when she knows it's not allowed so typical teenager...at 11!


Annicles said...

I wish the kintetic diet was more of an option for you. I know of one child who started it, about 4 years ago now. Before she was on a horrible cocktail of drugs and still having many seizures a week but with 2 weeks of starting the diet she was seizure free and has been almost entirly free for 4 years. The only time she had a couple was when the hospital needed to refigure her amounts of carbs/protiens etc because she had grown so well and put on weight and the ratios had become wrong. This for a child that we, her friends, were terribly afraid wouldn't see her tenth birthday. For H it has been like a miracle. I know it seemed almost impossible to her parents to begin with but now they would encourage anyone to try it. If you want me to put you in touch with them then email me. They'd be happy to talk to you about it.

fullsoulahead.com said...

Amanda, that is wonderful about the buggy. I hope the last drug has helped with her seizures. Sorry it has been such a rough time for Scrumpy.

fullsoulahead.com said...

Amanda, that is wonderful about the buggy. I hope the last drug has helped with her seizures. Sorry it has been such a rough time for Scrumpy.