Wednesday, 13 May 2015

A Special Holiday - Making Every Moment Count


It was our first family holiday after a time when we thought we'd never have a holiday again. 

In fact it was our first family holiday shortly after a time when we thought we'd never be happy again. 

It took some persuading to make us go.

We were scared, really scared. 

We'd been told our son would die in childhood. At one point he wasn't expected to make his second birthday. 

And when things started to get better we were too scared to believe it lest the walls came crashing back down.

We'd been living on a knife edge for so long.

We recognised the overwhelming need to make happy family memories but were terrified of the consequences of our ‘risky’ actions. We were torn between wanting to make every moment count and the fear of something catastrophic happening while we were away from home. 

But our wonderful palliative care nurse coaxed and persuaded. The charity React provided us with a lovely little caravan by the sea. We went prepared with notes and documents and back up plans; details of local hospitals and ambulance response times, a car packed with life saving medicine and medical equipment. 

That holiday was magical; a week in Wales by the sea.  The sun shone every day; there wasn’t a single cloud in the sky.

We laughed, we played, we relaxed, we had fun.

We made memories we can cherish forever.

#momentscount






***** ***** *****


This post has been written to mark Children’s Hospice Week (11-17th May) in conjunctions with the charity Together for Short Lives.  This year’s theme is about ‘Making Every Moment Count’ focusing on how precious time is for families by capturing moments in time.

Facts about hospice care & life limited children:
·         Most children need round the clock care – 24 hours a day, seven days a week
·         Families need support so they can make the most of every moment together
·         There are 53 children’s hospice services in the UK providing a lifeline for families
·         Children’s hospices are bright and happy places focussing on helping families make the most of every moment
·         Children’s hospices are all charities that rely on public support

Our local hospice has been a huge source of support for us.  You can find out more about Acorns and the work they do here: Acorns Children's Hospice.

Get involved:
You too can take part. A social media campaign will run throughout the week encouraging people to share the moments that matter to them by posting pictures, videos and comments on Twitter and Facebook, using #momentscount. Your moment could be a wedding, a celebration, a party, with friends and family or a career highlight... anything that captures a moment in your life that you would like to share.

So come on – share some of your precious moments using #momentscount too.




Monday, 11 May 2015

Weaning off the ketogenic diet - an update

For the last month or so we have been slowly weaning Hugh off the ketogenic diet- the diet that dramatically changed his, and our lives, when he started it just over three years ago. The wean, so far has been going well. His body hasn't had much carbohydrate at all for the last three years so we are very slowly increasing his intake on a week by week basis. The carbohydrate is in a powdered form and is added to his daily tube feed. He is currently having about the equivalent of a small box of raisins a day- still a tiny amount!  His body needs to adjust; his gut will have to get used to this increase in sugar and his body will have to learn to start taking energy from the carbs rather than fat as it's been used to. The increase in carbohydrate is gradually bringing down the ketone levels in his blood- the by product of the diet that has the crucial anti-epileptic affect on his brain. 

Optimal ketone levels for seizure management are between 3-5 and we are consistently well below that now. So far (and please touch wood as you read this) there has been no real change in his seizure activity, other than a few extra night time seizures which have caused him no problems. We're not out of the woods yet though- when Hugh started the diet the effect was almost instant, his seizure decreased dramatically straight away, even before his ketones had reached optimal levels. So, in my humble and inexperienced opinion, the reverse may be true- even with a very small amount of ketones in his blood, it could still be having an anti-epileptic effect. Time may tell I suppose. 

We're ready to move to the next phase now which is introducing a new feed. Later this week, we'll begin replacing one feed a day with 'nutrini multifibre' which is what he was on before he started the ketogenic diet. 



Just to be clear, as a few people have asked me recently, Hugh will still be fed by a tube. He's tube fed because he's not always able to swallow food safely and I don't think he can chew at all. He was tube fed before he started the ketogenic diet. On a day to day basis his feeding regime will remain unchanged really, just the content of his feed will differ. But I hope that the reduced amount of fat in his diet will help with his other gastric issues such as reflux and constipation, though that remains to be seen.

All in all the whole process is slow, steady and carefully controlled. We're testing his blood daily to see how his ketones and blood sugar levels are reacting and keeping a close eye out for any changes to his normal seizure pattern. 

I'll keep you updated with any changes and his progress, but far things do seem to be going well. (*Touches every wooden surface available).