It has been SO long since I
updated you on Little H’s progress on the ketogenic diet that I’ve had to sit
down and work out just how long he’s been on the diet (you may remember I was
doing weekly updates at one time). Well
... * checks calendar* Little H has been on the ketogenic diet for a grand
total of 286 days, or 40 weeks, which is incidentally the same length of time
as your average pregnancy (not that either of my pregnancies were that average).
We’ve had way more ups than
downs with the diet I’m happy to say. He
hasn’t had what I’d term his ‘serious seizures’ since March – just two weeks
after starting the diet. We had a period
of nearly three months that were completely seizure free and then a new type of
seizure crept in and has remained since.
However, although he does still have around three seizures a week now,
the severity of them is greatly reduced.
I believe we have the ketogenic diet to thank for that.
Our lives are unrecognisable
from how they were a year ago. At that
time, Little H was on his 5th antiepileptic medication which was
having little, if any, affect on his seizures.
He still continued to have around 30 seizures a month, the severity of
which were so great that they were termed ‘life threatening’ and each one
involved us having to resuscitate him, either using a bag and mask or giving
mouth to mouth. Most of his seizures
lasted around two and a half minutes, which doesn’t sound that long but try, if
you can, to imagine a child not breathing at all for that length of time. I have never seen a shade of blue like
it. It wasn’t just his fingers or his
lips that would turn blue but his whole body, a deep dark shade of navy
blue. It was terrifying. If it hadn’t stopped by three minutes (I wore
a stopwatch at all times) then we gave Midazolam- a rescue medication used to
sedate him and hopefully stop the seizure (the standard time to wait is usually
5 minutes). Usually it worked, but it
affected his breathing so much that he turned so pale and lifeless and his skin
went as cold and hard to the touch as stone, reminding me of visiting family
members in the funeral home. But at
least he was breathing, albeit very shallow, and the seizure had
stopped. After giving mouth to mouth on
the pavement at the back of the hospital, when I hadn’t managed to get there in
time and at the side of a dual carriageway on a cold, wet day as cars whizzed
past, I became too scared to leave the house.
At home I could deal with his seizures in a calm and controlled manner –
the oxygen, the SATs monitor, the bag and mask, the midazolam, the telephone, everything was close at hand
and strategically placed (where most people keep photos on their mantel piece,
we kept midazolam), but out in the real world? What if I couldn’t get
to him in time/ get him out of his car seat/ get the bag and mask out/ what if
it happened in Tesco and Cheeky (only two and a half at that time) were to run
away while I was resuscitating his little brother??? The risks, it seemed,
weren’t worth it. Three minutes isn’t a
great amount of time in a life or death situation and I wasn’t prepared to let
my baby die at the side of the road. So
I didn’t leave the house with him. At all.
Fast forward a year later and
life is a whole lot happier and the outlook is a lot less bleak. Little H’s seizures are so subtle, that only
someone that knows him well would recognise he was having one. He grinds his teeth and stiffens his arms,
sometimes grimacing or pulling odd facial expressions. They last longer, a lot longer – sometimes as
much as 20 minutes, but in that time his oxygen level isn’t affected, and his
heart rate only slightly (I’ve checked on his SATs monitor) so on discussion
with his Paediatrician we only give Midazolam if it continues beyond 20
minutes, as the likelihood of it stopping by itself then is greatly reduced and
I was reluctant to give it any sooner, since Midazolam has such a drastic effect
on him. So far we haven’t had to give
it all. The most important point to note
with these seizures though is that he is
breathing! And that for us makes all
the difference. Yes, he is having
seizures and yes they are long and yes I realise there are still risks involved
with seizures of any type, but when you’ve come from a place where you were
resuscitating your child 30 times a month, this is a huge improvement. This improvement has made our life
bearable. No, scrap that, it has made
our life fun. We managed a holiday this
year, to Wales. We’ve had days out as a
family. We’ve even left H with my mum
for a few hours whilst Mr. M and I went to a concert. These are things I daren’t dream of last
year. Then I didn’t leave him in the
room on his own for any length of time.
On bad days, I would have to carry him to the toilet with me. We’ve even noticed a difference in his levels
of alertness, he responds so much more to the sound of our voices with smiles
than he used to, he spends more time awake and is much happier and healthier
generally. He is, as so so many people
have commented – doctors, nurses, therapists, staff at the hospice, family,
friends – “a different child”.
Other changes for H this
year have been replacing his nasogastric tube with a mini button. He had the gastrostomy in June and it was
swapped for a button in September. And
he has had his tonsils and adenoids out which has stopped his sleep apnoeas and
he sleeps so much better (although not at the moment as he has taken to waking
at 3:30am again! Grr). I am even in the
process of moving him into his own bedroom, I’m just waiting on his fancy new
hospital bed to arrive – this is another thing I wouldn’t have dreamed of doing
last year.
When we started on the
ketogenic diet, we were warned that it might not work. The Holy Grail of course, was that H became
seizure free and weaned of his antiepileptic drugs. We dared not hope for that at the time, we just
wanted the severity of his seizures to reduce to such an extent that we could
have some semblance of a normal life.
Without a doubt, we have achieved that.
H still has seizures and is still on an unbelievably high dose of Phenobarbital,
but we can go out as a family, we can make plans a few weeks in advance, we can
create memories. Happy memories. I still panic when he pulls that
face, that used to signify the start of a seizure, I still carry midazolam, oxygen
and a bag and mask everywhere we go and we still aren’t brave enough to take
him on a boat or a plane so for the time being anyway, holidays to our family are
off the cards; but if you’d told me a year ago I’d drive on a motorway with
both boys in the car, that my mum would babysit H, that I’d leave H for a
weekend and visit friends, that we could go as much as two months without
rushing to the hospital, that I’d be able to make plans weeks in advance – and stick
to them, that I’d feel happy and hopeful for the future ... I wouldn’t have
believed it.
And I think we have the
ketogenic diet to thank for that.
That’s all for now. Apologies for the delay in updating. Initially, I didn’t want to tempt fate, but
now, we are so busy having fun that I just haven’t had a chance to do it! :D
If you want to catch up on
my post about the ketogenic diet, how it started and how we worked his feeds
etc then click here.
If you want to know a bit
more about the ‘dark days’, when we weren’t able to leave the house and about H’s
horrible seizures then these posts will fill in the gaps.
If you missed the bit about ketogenic
diet on channel 4’s food hospital you can catch it here.
Really lovely to read this :)
ReplyDeleteThanks Blue Sky. It's lovely to feel so positive about his future now. We are in a much better place than we were a year ago. xxx
ReplyDelete