20 January 2011

Growing Pains

I'm delighted to say Scrumpy went to a friends' house for tea last week. I didn't go, she was invited for an evening of computer games with chips and burgers for tea. An unremarkable event, and for most 13 year-olds it most certainly is, but this is the first and only time Scrumpy has been invited.

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.


Annicles said...

Amanda, I do have experience of the diet! My friends daughter was born with CP as a result of a disasterously mismanaged birth. Seizures started at 18 months old and when we firt met her, she was 7 years old and nbeing hospitalised on a monthly basis with absolutley awful seizures that I witnessed on a couple of occasions and even rushed her to hospital during once. Awful. About 4 years ago, when she was 9 or 10 her parents insisted that she try the diet as her medication was doing nothing to stop the seizures and everything to knock her out completely. She was part of the trial run by Great Ormond Street. She has had 4 seizures in total since the day she started the diet. I know it doesn't have such a massive effect on all sufferers but for H it has been the difference between life and death and also, a healthy happy life. Although she will always have the issues that come with Cerebral Palsey it is so amazing to see the difference between her now and before she started on the diet. It must be worth finding out more about. I know her parents would be happy to give you advise - they ask the medical staff at our local hospital to give their details out to parents who need more information about what it is like to actually live with and administer. Would you like me to introduce you via email?


Amanda said...

Annicles that would be great - you have my email don't you?

Brian said...

I came across your blog today and read this post. It caught my attention in particular because I also suffered epileptic episodes growing up (tonic-clonic and absent). As I do not know much more about your specific situation, I shant offer any sage advice without warrant but I would just like to say that I understand what your daughter is going through (and to a lesser extent you as a parent). Thankfully I grew out of them, unfortunately doctors told me that because it was related to puberty I could relapse any time in the future. Not to be bleak, but that's just my personal experience.

What current drugs have been tried, if I can ask? Are they still prescribing Depakote? That is the one that finally worked to supress my seizures and I know that when I took it, it was still in the experimental category. Just wondering about what's out there these days.

Hope things turn for the better for you.

Amanda said...

Brian thanks for stopping by. Feel free to lend us the benefit of your experience - knowledge is power after all!

Depakote isn't one we've tried but we have tried drugs from all the groups and combinations thereof. The trouble is the more drugs you have to try the less likely you are to find one that works.

Hope you remain seizure free for many years to come