It has been a while since I posted specifically about the ketogenic diet and how Little H is getting on so I thought now that we are at the end of our 12 week trial period, it would be a good time to update you.
Superstition stopped me from counting how long we’d been seizure free and it literally wasn’t until I sat in the busy corridor, waiting to be called in to see the neurologist that I plucked up the courage to look at the seizure diary. I was astounded and delighted to discover little H had been seizure free for awhopping nine weeks! That’s better than anyone could have predicted and much better than his previous 31 day record atthe start of the diet. Up until that point, I was reluctant to place too much emphasis on the effects the ketogenic diet were having on H. I’ve been too scared to even hope that the diet could be the cause of the reduction in seizures and the increase in his levels of alertness and activity. If the diet is the cause – then it suggests we have, at last, got some element of control over H’s seizures. If it’s not, and it’s luck, or a good patch, or just one of those things, then everything is liable to come crashing down around us at any minute. But nine weeks??? Surely that can’t just be luck? Nine weeks seizure free when the usual space between seizures is 7 days? Dare I say it? I think the diet may actually be working for H!!! Factor in the fact that during that time, Little H has been teething, has had a number of viral illnesses and spiked temperatures, all of which have caused seizures in the past and the result is even more remarkable. Consider also then that H’s dose of phenobarbitone hasn’t increased since he started it last July, that he is considerably bigger and heavier now and so is effectively on a reduced dose, then the fact he has been seizure free for so long is almost unbelievable.
The neurologist agreed that the diet appears to be having the desired effects and we are now signed up for two years, with the potential to reduce (stop?) his anti-epileptic drugs and with the long term aim of being completely seizure free! I’d never dared imagine that before. Seizure free? We started the diet hoping for a reduction in severity and frequency. Seizure free seemed an unobtainable dream. But who knows?
H’s ketones have been erratic to say the least and have taken some time to get the required levels. Most days now we have one reading around 4.5 (in the evening) but the morning one is usually between 2 and 3. We had a few instances where his ketones were high 5’s and occasions when they were nearly 7. Usually ketones over 5 should be treated (with fruit juice or a mixture or maxijul and water) but H has been showing no ill effects until they get above 6, when he starts to get a bit irritable, so we only treat now if they are above 6 but keep an eye on them if they are above 5 just to check they don’t keep on rising.
As things have been easier lately, it has allowed me the time and space (mentally so to speak) to recall just how difficult things were in the not so distant past. It is no exaggeration to say that I was terrified to leave the house, scared of what would happen if H had a seizure away from home. At home the seizures were scary, but I could remain calm, remember what I had to do and felt some element of control. How would I cope though if I was driving and he stopped breathing? Or I was in Tescos? Or the park? I really couldn’t stand to think about it. And always in the back of my mind, scratching away, refusing to be ignored was the thought that any one of those seizures could kill him and I couldn’t bear for him to die in the cold and wet at the side of a road. So to prevent that happening, I didn’t leave the house. At all! Well, not with H anyway.
|"I'll just check if it's ketogenic, Mum"|
It took small step after small step to finally build up the courage to go out again. First I had someone drive me to appointments so I could watch H the whole time, then I started local journeys. It was a long time before I took both boys out together – what happened if H stopped breathing? Cheeky could run out into the middle of the road. For a long time I couldn’t/wouldn’t drive Cheeky to and from nursery – that broke my heart – but slowly, bit by bit I got there. I remember asking our palliative care nurse if I was overreacting and he said that whilst it wasn’t healthy, it was a perfectly normal response to the trauma of having to resuscitate H at the side of the road and that I was treating his condition with the severity it deserved. I think I’d hoped he’d say I was being ridiculous and that of course he wouldn’t die while I was out, but he didn’t and I knew then as I know now that that is a risk we face each and every day. Yesterday, I took both boys out in the car to the ‘Big Tesco’ (not just the local one – though the big one’s not actually that far). That was a huge achievement for me and a reminder of how far we’ve come.
Those were really dark days. I am only just admitting it to myself now I think. But there were days when I cried and felt so useless; days when I was terrified and anxious and days when I quite literally sat on the floor crying and rocking. I searched desperately for understanding; support; for people out there who knew what it was like to live with that fear that epilepsy brings. You may recall my unsatisfactorymeeting with the epilepsy specialist nurse a number of weeks ago. Well after some thought and careful consideration, I decided to submit a formal complaint. I feel she should have been the one helping us through those dark days. She should have been the one to fight for the SATs monitor, which could identify when his oxygen levels dropped so we could finally get some sleep, she should have been there to tell me I wasn’t alone, that there were others out there and that I’d get through it eventually. I hope, by submitting a complaint, it will ensure that no-one else feels those same feelings of desperation and isolation that I did and that they get the support they need.
|What do you mean I'm not as scary as my cousin?|
And finally, we had an unexpected and rather unwelcome visitor this week. Thankfully not Mr. Evil Seizure Monster, but his slightly less evil cousin – The Seizure Troll. Yep, on Bank Holiday Monday, H’s seizure free reign came to an end. H’s seizures don’t fit into any of the helpful descriptors you find on the epilepsy websites. (Fit! Do you see what I did there?) They’re ‘tonic’ in that he stiffens but of course, H, being the complicated little
bugger monkey that he is, his carry on for minutes at
a time, rather than seconds. And no
breathing for that length of time isn’t great.
The Seizure Troll presented a bit differently, some stiffening of his
arms, laboured breathing and teeth grinding interspersed with a maniacal kind
of smile/grimace. Initially I suspected
it was wind, but 6 minutes later when it ended I guessed it was more likely to
be a seizure. This is the annoying thing
with epilepsy, sometimes you just can’t tell.
One friend was laughed out of A&E by a complete arse of a
Doctor for thinking her sons unusual jerks and tics were epilepsy. Some hours later, having watched the video
footage she’d had the forethought to bring, he shamefacedly changed his
mind. Another friend’s son has seizures
that don’t present any physical symptoms at all. Many people have two or three different types
of seizures. How on earth then, are you
supposed to tell if it’s a seizure or not?
Whilst it is a shame that the seizure free reign came to an end, I don’t feel too disheartened. We had nine amazing weeks for which I am truly grateful. And H has developed a cough and a cold since which is probably what caused the seizure in the first place. Anyway, the key thing about this new type of seizure that presented, the thing that makes it less scary and the main reason that I’m not too discouraged is that he did in fact breathe through it.
Or the Ketogenic diet.