Hello, I'm Lily's mum Vanessa.  My daughter, Lily, is 8 years old and has Gelastic Epilepsy.  She started her ketogenic diet journey with Daisy Garland support in April 2019.   The diet was our last hope so we had great expectations of Lily becoming seizure free.

Prior to starting the ketogenic diet, Lily had tried several anticonvulsant meds - Carbamazepine when she was 2 3/4 years old and then the addition of Topiramate and Keppra.  None of these meds controlled her epilepsy so it was decided to wean her Keppra and Topiramate before starting Lily on the ketogenic diet. 

Our time on the diet hasn't been plain sailing.  There were more than a few times where I wanted to throw in the towel.  At the beginning (as well as at regular intervals throughout the diet)  Lily wouldn't eat any of the keto foods I cooked.  I had a freezer full of lovingly home-made keto food!   This made me feel very emotional as I had pinned everything on the diet working.    At my lowest point I cried in Asda when the epilepsy nurse rang to ask how things were going.  

The first couple of months on keto saw Lily having more seizures than ever before and it was suggested that we should come off the diet after our 3 month trial.  But I didn't want to come off the diet.  I strongly believed it was our only hope of seizure control.  I wanted to give the diet more of a chance to work.  So we kept calm and keto'd on and I'm so pleased we did. The ketogenic diet has been a game changer.  Here's why:

2018 - 594 seizures despite being on 3 anticonvulsant medications.

2019 - Weaned 2 anticonvulsants, with just 1 in place when we started the ketogenic diet.  The diet saw Lily enjoying over 50% seizure reduction in the first year of being on keto.

2020 - 170 seizures during year 2 - a huge seizure reduction from the 594 seizures we saw per year pre-diet!

2021  - 27 Seizures between January and April, dropping to 2 seizures in May.   After 2 years on the diet and because things were so settled our medical team advised us to wean the diet, with a promise we could go back on it should things go belly up.  We are now at the end of May and Lily is completely keto free! Eating the same meals we are eating and enjoying the odd iced bun from the local bakery! Things are good on the seizure front and she is very happy in herself.  Her happiest moment was when we told her she could have a whole apple in her school lunchbox!

I should say here that Lily's ketones were never that high on the diet, which goes to show that not every child needs to get the highest ketones possible for diet success.  The ketogenic diet has given Lily really good seizure control, but she still has the odd breakthrough seizure.  However, with seizures greatly reduced and seeing all the other positives that came with being on the ketogenic diet, we consider the diet to have been a huge success.   Well worth all the hard work we put into making the diet work.   Lily is doing things she could never do before.  A reduction in seizures is seeing Lily achieving, remembering and learning.  Not my idea for the Segway!  Lily is very strong willed and saved her own money for over a year to buy it, to be like others...  last summer she learnt to ride it standing up. Fantastic for a child with some left-sided weakness.  But the best news is still to come...

We had an appointment at Kings College Hospital earlier this month and the consultant told us that Lily's last sleep EEG showed her brain had different spikes.  You always think the worst when you hear something like this.  However, the results revealed that Lily's brain has re-routed pathways and her epilepsy has changed.  We have been told that Lily may now possibly grow out of her epilepsy, and this is all down to her ketogenic diet!  Receiving this news was like winning the lottery as we now have hope in our hearts that Lily will grow out of her epilepsy.  (Outside of the ketogenic diet, we were told the only potential cure for Lily's drug-resistant epilepsy would be brain surgery should more advanced technology become available).  

So, what I really want to say to anyone thinking of trying the ketogenic diet for seizure control is:  GO FOR IT!!!! 

And my message to families whose children are already on the ketogenic diet?

Don't be down if you are not getting the results others may be getting.

Every child reacts differently to the ketogenic diet.

The diet may be changing things inside of your child's brain that you cannot see.

You don't always need the highest possible ketone readings to get the best possible seizure control.  Your ketogenic dietitian will explain this to you.

If you're not seeing the results you had hoped to see in the 3 month trial period, ask if you can keep going with the diet for a bit longer. (It took us over 2 years on the diet to get the results we're seeing today!)

Make sure you join Daisy's Keto Café parent support group. Seriously, we would never have continued on the diet beyond the first 3 months without the brilliant support and daily encouragement of the Café families.  They are a very special bunch of people, pulling out all stops to do their best for their brave children.

I will be sure to keep you posted on Lily's progress going forward and will be back soon with another exciting update!  

Vanessa.

June 2021 update. So after completely weaning off keto middle May & May being her best ever month of 2 seizures. June Lily had 4 seizures. (which I still think is fantastic compared to how many she used to have). But even better Lily has had her longest spell 17 seizure free days in between the 4 seizures. (she does have ADHD it's a lot more noticeable). Lily is a lot more bouncy since coming off of keto & struggling to concentrate as well. Teachers emailed me & said Lily was more lively & assertive!! So they have noticed a change in her. We also got blood results from April & carbamazepine levels low. So had a slight increase by 100mg (half a tablet) at night time. We even attended on Saturday. Was a late night, lots of excitement, music, dancing & swimming but pleased to say no seizures since 1 on Thursday 1st July .

August update. Hi all. Hope you enjoying the holidays. We are currently away. Lily collecting shells & rocks & jumping in lots of puddles on the beach. So would like to share today is our longest run of seizure free days... We on day 36 of no seizures!! July was our best month ever with 1 seizure. So this year (218 days) Lily has only had 34 seizures . It feels like a miracle. Compared to last year to this point (Jan-Aug) 162 seizures. For those who don't know us. Lily was on keto for 2 years. Weaned off completely 18th May 2021. It wasn't an easy journey for her she didn't like most the foods I made for her & alot ended in the bin. Her ketones were never high during most of diet. & she continued to have seizures all during her Ketogenic diet journey. & her seizures got worse before they got better. Month 3 we had lower numbers than month 4 was awful. Then started improving from month 5. Am so pleased we gave it everything we had, through all the tough bits. Because we are still seeing results & long may they continue.