I can’t believe it has been four years we’ve been living this nightmare.
We were on our way home from a weekend away when Adam had a fit in the car. He was ambulanced to hospital and given the all clear – nothing to worry about.
We had NO IDEA what was going to happen.
A few days later another seizure and then they became increasingly frequent and several seizure types developed. Mostly tonic clonic, absences and drop attacks.
Adam’s epilepsy was described as complex and severe so in our ingnorance, we let the doctors start Adam on a cocktail of drugs. We started with lamotrigine and sodium valproate. As a SHORT TERM measure, clobazam was added to try to achieve some level of seizure control.
None of these drugs really seemed to help Adam had he was having a lot of seizures, we spent a lot of time in hospital with the doctors trying to stop the seizures but only a really strong IV med would make any difference.
We weaned the lamotrigine and during that period things worsened. with what I have learned subsequently I suspect that the adverse reactions were withdrawal seizures.
The drop attacks became so destructive – Adam would crash to the floor with a total loss of muscle tone.
It was at that point the doctors suggested Adam wear a helmet.
Heartbreaking as it was, I had to go along with it – the alternative might be for Adam to suffer a fatal fall.
At this time Adam and his older sister were at the same lovely little private school. Not for long though. Not long after the seizures started Adams headmistress starting to drop hints that the private school sector was not equipped for children with additional needs.
She told me that it we wanted (like any parent WANTS that) she could begin the application for a statement of special educational needs.
It was around this time we saw the Trevor McDonald programme about the ketogenic diet. It sounded great but because Adam was such a fussy eater there was no way we could even thing about it.
Adam was having a lot of time of school and his class teacher really tried hard to help him keep up with his classmates, but with the best will in the world there was no way he could learn at the same level as the other kids.
The headmistress was great, or so we thought. In the middle of the summer holiday we received a letter detailing the reasons why it would be unsafe for Adam to ge back top that school in September.
So there we were, in the middle of August with no school place for Adam.
I phoned Surrey County Council and it turned out there was one place available at a really good primary school in Epsom. We took the place and relaxed a little. Adam’s teacher’s late husband had epilepsy and so did her brother. And the SENCo’s husband had epilepsy.
The day he started there we began the statementing process, because it seemed his previous head had been all talk.
It was such a relief that Adam was with a teacher who might understand. She was great and then she was pentioned off to be replaced by the most unenthusiastic teacher I have ever come across.
Adam received some small group work but most of the time he was expected to keep up with his classmates.
The school conducted cognitive tests which showed he was at the level of a far younger child, but they still kept expecting him to keep up.
It took a long time before we received a statement from Surrey County Council and when if did arrive Adam was supposed to move up to the junior school into a class of 35, with 13 hours support per week, and those hours might be spent planning and watching him at break times.
It was at this time I started looking at MF. I was curious to know where other kids with complex epilepsy went to school.
We looked at St Piers and Brooklands schools and I felt most comfortable with Brooklands for Adam.
I REJECTED the original statement and submitted the form with my chosen school and to my amazement Adam received a place there.
A couple of weeks later there was a MF picnic in Oxted. I wasn’t sure whether I should go, after all, these people are all on the ketogenic diet and we had been told not to even consider it with Adam because of his limited diet.
I really couldn’t believe it when I was being told that there is a version of the diet which can include a fair amount of carbs. The girls suggested I come to the MF conference in Liverpool. I DID go and it was at the conference, meeting other parents and listening to the speakers that I decided I really owed it ti Adam to give the diet a try.
Helen Cross was one of the speakers and she mentioned that she was recruiting for the diet trial at GOSH. I accosted her during one of the breaks and mentioned Adam’s fussy eating but as far as Dr Cross was concerned that might not be a problem.
A couple of weeks later we saw Dr Cross at GOSH and she didn’t want to take Adam on as part of the diet trial because his limited diet could distort the trial results but THERE WAS NO REASON WHY ADAM COULD NOT TRY THE DIET. In an attempt to help us with Adam’s eating Dr Cross referred Adam to the feeding clinic at St Georges AND THAT WAS IT – WE WERE IN.
We met the feeding clinic team and that gave me a way in. If I could get some MCT keto recipes for Adam knew I could crack it. Forget varying Adam’s diet for now, just let me have some keto food he will eat.
It worked like a dream and we had to get into keto the wrong way round. Rather than a referral from Adam’s neuro I had everything in place, and to start we had to get the go ahead from HER.
Anyway, I’ve gone on a bit here. Since Adam started keto he had become a little more adventurous with his food. Enough that I can make loads of different meals using EKM.
When I am totally disciplined Adam’s seizure are reduced and his NCS is better controlled. If I let things slip it all goes belly up, proving to me that Adam is responding really well to the diet.
It wasn’t doctors who introduced me to the MCT diet, it was parents who had also seen their kids suffer.
Thank you to all of you, and you know who you are.