01 September 2011
27 July 2011
17 May 2011
11 May 2011
27 April 2011
24 April 2011
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
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.
20 January 2011
When she was little, Mums would nervously approach me to negotiate "because she is, well, a bit different.....will she manage..... I'll understand if you don't want to..." Believe me, I've heard every version of the "charity invite" that "oh cripes they know I'm having a party I'll have to invite them but please let them say no"
I started this post a while ago and as is the habit, life got in the way and called a halt to my writing. We've had growing pains of another kind - including hospital visits.
Scrumpy is still having seizures all the time including at least weekly major tonic clonic which I'm afraid to say have not been effected one bit by the last new medication. All we managed to do with that was add to her troubles so fell at the first level with that one. This week we had our first experience of seizure activity requiring hospital visit via ambulance. It all kicked off while she was at the respite centre - we got "the call" at 7.50am, definitely not what you want when you were relishing a rare lie in.
Thankfully all was well and she was able to get home after a few hours. The hospital staff were great but I'd rather not meet them again for a while.
So, now we have two - and only two - options for treatment. Ketogenic diet or VNS. Ketogenic diet is going to be tough and we're waiting for the dietitian for advice if this is even doable with Scrumpy's restricted pallet but from the little i know it could be well worth trying. The downside, and I feel it's a big down side, is all the hard work we've done in encouraging her to eat things like pasta and not white bread will be thrown away.
As for VNS, well, the same sword of Damocles still hangs in the air. Do we put her through surgery or do we hope she gets the other side of puberty and stops having seizures on her own?
Now, onto outside growing - we still have ducks waiting for dispatch and I'm hoping this will happen sooner rather than later for the sake of our feed bill if nothing else. This week has also seen the start of preparations for the 2011 growing season so fingers crossed for good weather (country file forecast was for wet this week)
In other news, while I'm here, we are now a two dog family again! A couple of weeks ago, just before Bear's 12th birthday, Mickey came into our lives. He's a 4 year old black and white boarder collie with sticky up ears and a great nature. He adores the girls and is convinced, totally, that if he stares at his toy for long enough it really will levitate so he can chase it.
Interestingly, there have been a lot of "Ollie disappeared" from Scrumpy (Ollie was our dog who died 3 years ago) so for all she makes out she's not interested in dogs they obviously make a connection some how. Also interesting was Mickey's reaction to seeing Scrumpy have aseizure. He was totally unphased but showed interest to the extent I will be contacting the disability dog training people with a view to him being a seizure dog. I'm not sure what this would involve but I'll find out (at some point!) and let you know.
07 January 2011
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!