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Dear epilepsy, we aren’t giving up - the keto journey

Dear epilepsy, we aren’t giving up - the keto journey

The ketogenic diet- what does that mean to you?

Prior to learning about it recently I thought of it as some really restrictive diet that people do to lose weight.

I had likened it to the Atkins diet or something similar… I suppose in a way I thought it was a fad.

That’s not to undermine the efficacy of those diets - I knew they worked for many and aren’t to be scoffed at.

But I hadn’t actually realised that the ketogenic diet had so many applications and how effective it could be.

I have since learned (albeit via google), that it can help people with their weight, diabetes, PCOS, parkinsons, autism, epilepsy, and a whole host of conditions/diagnoses. 

It was first brought to my attention by our pediatrician.

Conveniently, her specialism is neurology and she is our hospitals “go to” person for epilepsy related treatments.

We have tried various combinations of anticonvulsants and have tried hard over the last few years to try and minimise the amount of seizures Amy has daily.

Thankfully we are at a point now where we aren’t calling ambulances every other day, however the seizures still affect Amy on a daily basis and we are still seeing 100s of small ones each day.

If she is tired or feeling unwell, we can see a huge increase in the seizures and can also start to see the nastier prolonged ones which often require rescue medication.

Epilepsy has taken a lot from us.

It pains me sometimes looking at old videos of Amy being able to do things that she can’t do now.

The medications make her less focused, they make her tired, grumpy and drowsy.

I’d love to get her off even just one of her anticonvulsants.

No one wants to pump their child full of medication and we find it is a daily struggle trying to work out a good balance.

You want to help her various afflictions such as muscle spasms and seizures, but you don’t want to lose your child’s focus and personality as they grapple with the negative side effects that medication can often have.

We are on week two now of the ketogenic diet and I am learning that it is a lengthy process.

I was astonished initially at the endless succession of deliveries we were receiving - sharps bins, ketone strips, glucose strips, finger pricker, glucose monitor, and then several different components to make up the feed!

We now have two large cupboards dedicated to the new feeding regime and are cautiously optimistic over what may unfold over the next few weeks.

I was so nervous about checking Amy’s blood.

My mum is type 1 diabetic, so it is quite normal for me to see the equipment involved and what gets done; equally there is something quite unwholesome about purposely making your child bleed - even if it is under close medical instruction and supervision.

Currently we check Amy’s blood twice a day to check her ketone and glucose levels.

Thus far no medications have had to be given for low sugars or high ketones, but then we are only on stage 2 of weaning Amy onto a full keto diet. 

For some reason Amy loves the blood checks.

She laughs and gets excited when she sees the sharps bin etc.

She does the same thing when I go to suction her.

I’m not sure if it’s nervous anticipation or that she genuinely gets some kind of thrill from the whole thing.

All I know is she’s far braver than me!

Even though she doesn’t mind it, I still find myself plagued with guilt.

I don’t like how many unpleasant things she has to endure on a daily basis.

The only reprieve I can take is knowing why we are doing this.

I just hope that Amy knows why we do what we do and that all we want is for her to be as pain free as possible and to get every opportunity to develop to her full potential.

Seizures and meds have hindered Amy’s development in many ways and I find it all so unfair.

But instead of dwelling on it it’s best to try and proactively seek ways to improve the situation.

There may come a time where we have to accept it is what it is and to learn and adapt, but for now keto is bringing me some hope.

I posted on Facebook about my apprehension and optimism for starting the diet.

Someone pointed me in the direction of a charity called Matthew’s Friends - and I’m so glad they did.

I joined the Facebook group, did a little introduction, and got the warmest welcome!

Like so many different areas of our community - there is always a group of people out there that have a wealth of experience, keen to share their knowledge and root for you in your journey.

They even sent us a welcome pack with weighing scales and all sorts of wonderful helpful things. I’m so so grateful. 

It has amazed me seeing all of the different ways keto is done.

Amy is tube fed so in some ways it’s relatively simple.

We have different powders and liquids, different sized scoops, and we mixed it all in water.

I’ve seen parents of orally fed children do such amazing things to ensure their child can follow the diet but also get to enjoy the foods they love.

I’ve seen people empty an advent calendar, make their own keto chocolate and pour it into the calendar and put it all back together so that their child can still enjoy the Christmas countdown.

I’ve seen people seek out recipes for cakes their child loves so that they don’t have to give up their favourite things.

It’s very moving to see the lengths we will all go to to make sure we are giving our children the best quality of life possible, whilst managing to give them what essentially is quite a complicated treatment for a condition none of us asked for!

I know that as time goes on, more treatments will likely be found for epilepsy.

I still think it would be great if we could see cannabis oil being used more for people.

I know a few with refractory (medicine resistant epilepsy), or severe movement disorders have had trials and take this as a treatment option.

I just hope that research continues and that many of these life threatening conditions can be tackled head on so that people can live as normal a life as possible.

I don’t ever expect the seizures to go away fully, I think that would be delusional. But there is definitely no harm in pursuing other treatment options to try and get the best control possible.

I still have my reservations with the diet.

Amy has quite a complex situation with her gastro issues.

She is 24 hour fed into a jejunostomy. Volume tolerance and allergies have always been a challenge for her.

I do worry that as the ratios of her feed change, that she will struggle digesting feeds.

I am worried that we may see the return of the screaming in pain because she can’t digest the feed.

I am assured by our dieticians that if this were to happen that there are plenty of other options and tweaks we can make, and this instils confidence.

It’s great to know there are charities and also specialists that can guide you if any troubles arise.

Have you or anyone you know ever done the keto diet? I’d be interested to hear the experiences of others.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Ceri-Ann Brown

Meet Our Blogger

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant guinea pig Vito. I care for Amy full time and work one day a week in an office/call centre. In my spare time (ha!)

View Ceri-Ann’s Profile

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