01 September 2011

Another Book Recommendation...

Lydia's second book is available from Lulu.com today - I did a blurb for it and the draft I read was illuminating.
Click HERE for your copy

27 July 2011

What's for you won't go by you

On the basis Lexie is for Lydia, see this link.http://www.giveforward.com/bringlexiehome

Where have I been?

Woken at 4am by next doors cows in our hay field.
Whare have I been? Up to my neck in life, that's where! Between SOAR charity funding crisis, kids crisis and trying to stay afloat this blog hasn't even made it to the outer limits of my radar, so time for an update.
Scrumpy is still having a lot of seizures and is on yet another drug regime which thay know will only be a tempoaray fix if it works but hopefully it will take us to the point of having the VNS fitted, for which we now have funding thanks to the NHS. It's grasping at straws and I think it serves more to focus our attention and make us feel we're doing something than actualy achieving better seizure control. Everything crossed for the VNS working...
Bear has started having more seizures too and as the mood leveling medication wasn't working significantly she's coming off that so we're back to a bit more sweaty bouncing and even less sleep.
Both girls are doing well though, it's not all doom and gloom! We're having fun in the holidays with lots of beach trips and a visit to Landmark yet to come.
Staff has been an issue with one new member leaving us early - I won't say I sacked her but it just wasn't working. The rest of the team has settled down though and in the wake of Surfer girl leaving us we're in a new normal.
We have a new dog - Mickey - who has bonded with Bear in a big way and I will be contcating the service dog traiing people to get some help in developing that. Don't panic, Meg is still with us caring for my sanity and getting way too excited at the mere mention of cake and candles.
Birds are all still with us although it has been a terrible year for ducklings so far as none have survived. We have two birds sitting at the moment so fingers crossed we'll have some success.
Bruce still thinks he should be a house cat. No change there!
My friend and felow autism Mum Michelle has finally found the time and courage to publish her memoir - click herehttp://http://www.facebook.com/l.php?u=http%3A%2F%2Ffullsoulahead.com%2F2011%2F07%2F25%2Fintroducing-daughter-of-the-drunk-at-the-bar&h=iAQBZe9MK - she's a lovely person and does great things with her kids after a dodgy start in life so it promises to be a well written interesting read

17 May 2011

This is something you could do...

People often ask what they can do for me, or say they wish they could help the girls. Well, there is something and my friend Michelle put it very well so over to her.
Click here
I've talked about Lydia before and regulars will know she has given me insights and perspectives on aspects of autism I could never have learned if it weren't for her. So, if you want to help, here's something you can do.

11 May 2011

I just found this on another blog...

Why the Dichotomy
I am often
Only who I'm not
But you don't care
As long as I have words for you.
You can't understand
(Through no fault of your own?)
That who I am
Is not the me you see
Do you want to work on that?
They ask
No I don't;
I want to be free
But in this world
The only freedom
Is to be
Everything you aren't
I read this and it struck so many chords on so many levels I thought I'd share it with you. Think about how you are around autistic people. Think what you ask of them. Think how you let them be, if you let them be. That question "Through no fault of your own?" Ask yourself that and answer truthfully.

01 May 2011

Read and inwardly digest

A message from Lydia... read this

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.

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.

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!