Lily-Mai’s Story
Lily-Mai was born full term and we had no problems through my pregnancy or during labour..this is something we have been asked by every doctor we have seen.
From very early on I knew that something was not quite right, she was a very sickly baby and nobody could seem to offer an explanation. She didn’t ever winge like a colicy baby or one with reflux, she would literally just be sick and carry on but due to this we had lots of problems with weight gain…nobody really wanted to listen to me because she was such a smiley happy girl.
She did everything very late from sitting up to crawling to walking and talking…she had not long started walking before she turned two, but again nobody was interested as she was just about managing to do everything within the age brackets for example they said they wouldn’t do anything about her not walking until she actually turned two. Her low muscle tone would also correct itself when she started to become more mobile and building muscle.
On the 11th November 2012 I got a call while working over an hour away, from Lily-Mai’s childminder saying “somethings not right, I can’t explain it, it’s like I keep making her jump and then she cries”. I told her her not worry I’d be leaving work soon and I’d get her booked into the doctors for that evening. Within 10 minutes she called me again “No something really isn’t right” I asked her if she felt she should call an ambulance and we decided that it didn’t sound like an emergency. I could hear the rising panic in her voice despite her trying to hide it and decided I needed to get home as soon as possible. By the time I got there Lily-Mai wasn’t walking after every “jump” she would scream and then crawl towards me. We took her straight to the GP who saw her without an appointment, but they too also didn’t recognise what was happening and phoned the children’s admissions to say they were sending me there for an assessment. Again on arrival, they didn’t recognize anything either but they thought it best she was admitted for the night for observation. It was 11 days later that we were released from hospital following numerous tests, eeg, ecg’s, blood tests, the list goes on. We left the hospital with a bottle of anti epilepsy medication, already our 2nd after one already failing during our stay and more importantly we had a diagnosis….she had epilepsy! Nobody could tell us a great deal, if she’d grow out of it, if her previous issues were related etc, but I do remember them telling me how successful the medications were.
Over the next year Lily-Mai tried numerous drugs in various combinations and doses…all of them worked but only ever for a short period of a couple of weeks and then the seizures would break through again and they were developing. We now knew she suffered from drop attacks, absences and tonic clonics, we thought she was having around 40 a day but a further eeg showed that we were missing a lot of them and she was infact having over 100 a day (we felt awful that we, her parents, weren’t even spotting them all). To add to this we were now also seeing side effects from the drugs, our happy smiley little girl was now violent, always upset, zero attention span and add to this the number of cuts and bruises which were the size of gold balls, stitches …we were tired, Lily-Mai wasn’t the only one suffering it was far reaching and our little family, her brother included, were really feeling the toll.
We were offered a course of steroids for Lily-Mai to try, but given that Lily-Mai was so high risk for this option and also given the fact that they told us it would only give us a short term fix we were against this option.
I began researching before our next clinic appointment knowing that we couldn’t continue in this way. During my research I saw the mention of surgery and ketogenic diet. My husband and I both agreed that if they mentioned surgery we would resist and bring up the diet as an alternative. Our relief was huge when we didn’t need to have this argument with them they bought up the diet first and very quickly we met with the ketogenic team and Leicester Royal who said yes, she was a brilliant candidate for the diet.
We started very quickly and other than her suffering with highly sensitive ketones, things were going great, we saw improvement very quickly, her seizures were down, her concentration was on the up …it was great.
It wasn’t long though before Lily-Mai took a dislike to the food, we tried numerous recipes, methods etc with the help of her team and Matthew’s Friends, but eventually Lily-Mai pretty much stopped eating or she certainly wasn’t eating the ratios she needed. She now wouldn’t even take her medication. Everything was a fight, every meal time became a war zone we just knew how well it worked if she would actually eat. I couldn’t do it any more I couldn’t have this relationship with my daughter, we would have to stop the diet and find another way, it wasn’t working if she wasn’t eating anyway.
In August 2014, after two years of struggling…the amount of time they told us she would likely be on the diet for, her team agreed to her being partially tube fed. So she could have a plan in place that would not take away her oral meals but would be supplemented with top
-ups. It would mean that she could have most of the fat she needed through her tube and when she struggled with the other aspects of a meal we could also supplement these.
Lily-Mai now has a button after having started with an NG tube and then a peg and although the tubes do come with their own issues and shouldn’t be taken lightly, they are far out weighed by all the problems we were having before. Her seizures are down to around 10 a day and we very rarely see tonic clonics or drop attacks. Her seizures now are mostly made up of absences. We have weaned two medications with only one more to go. She is finally concentrating more and communicating better and her violent outburst are few and far between.
Nothing is completely fixed but we have so much hope now!!! We know how many friends out there we have if we ever need to call on them. Matthew’s Friends are our friends and they really are the best kind.