Alice’s Story

A happy baby, quickly aware of her surroundings and able to quickly indicate to what she wanted.

A fun baby, full of life – cheeky, easily achieving her milestones.

At 13 months she had the MMR and began to develop virus after virus but at the same time started to toddle and by the time she was 15 months old had a vocabulary of approximately 15 words.

The viruses became more persistent in the form of ear and throat infections and then we noticed her afternoon nap had got longer, she was sleeping up to 4 hours.  I started to worry, especially when she began sleeping later in the mornings as well.

These two pictures were taken on 18th November 1999, the day before our lives totally changed.

You can see she a happy little girl who has just mastered the art of Pooh Sticks but a few moments later is snuggled asleep again.  Worried we went home.

The next day, the 19th November Alice had a temperature but she was playing.  Running to kick a ball she screamed and fell to the floor.  Her beautiful eyes were fixed open. She turned blue in colour and I couldn’t get any response.  I thought she had died and terrified phoned for an Ambulance.  After three very long minutes Alice cried.

At the hospital she had a convulsive seizure and staff thought she had simply had a febrile convulsion.  They changed their minds after she had another seizure, this time convulsive, short but intense … and then another and they continued hourly:  in 24 hours 24 seizures.

It was decided a lumber puncture was necessary and the result was they thought Alice had Encephalitis and started her on iv antibiotics and anti viral drugs but the seizures continued.  Loading doses of the iv anti convulsant Phenytoin began but she was soon put on others.  We were shocked and felt numb so much so I can’t now remember all the names of the medication, I just wanted it to work and still thought we could get our lives back to where they were.

Not to be.  Alice’s seizures would stop for a day and then change tonic clonics right sided only drop fits. Poor Alice, her veins kept collapsing from the anti viral drugs being administered and she was constantly having to have canulars replaced.  She became very stressed by this and was sedated a couple of times.  A trip to GOSH for an EEG showed slow waves suggesting encephalitis.  We returned to our local hospital and continued the treatment for Encephalitis.  The seizures reduced to about five a day.  Alice was a little better but not right.  She would walk into walls and in circles but backwards.

People and things Alice loved no longer seemed to matter to her:  she didn’t recognize her grandparents, couldn’t play her little games with them and had no interest in her favourite Thomas book that made sounds when you pressed the buttons.

Two weeks after Alice was admitted the doctors were thinking of sending us home.  Anxious I explained my concerns:  yes, she appeared much better but I knew she wasn’t herself, in fact she was totally different.  I was told that she had been very ill and it would take a long time for her to recover.  However that night the seizures picked up again only this time multiple types. We were transferred to GOSH where our nightmare rapidly increased.

Alice’s seizures increased and came in clusters and drop attacks.  She had screaming fits and you could hear and feel her fear – we were very scared parents.

The result of these fits was that Alice regressed.  She lost the use of her right side, then the ability to sit up.  She regressed to roughly 6 months old.  She had lost her strength and was very floppy.

These pictures show her determined effort to sit, stand and walk, each little achievement was exciting.

By this time Alice was on Epilim, Lamotragine, Phenytoin and a vitamin.Every time a new drug was introduced it would work for two days then the seizures would return.  The doctors were concerned about Alice, she was loosing skills and they thought she may have Batten Disease.  I remember feeling numb and my parents listening in horror to me explaining to them about this illness.  They had never heard about it, lot’s of people haven’t.  It’s often the case that until you have an ill child you are not aware of how painfully sad and difficult some people’s lives are.   Watching their reaction I wished I too could cry.  I felt numb and had no emotions so no tears for me then just this drive to get through each day and say things exactly how they were.  GOSH was winding down for Christmas and we were being moved along with a few other very ill children into Parrott Ward.

Christmas Eve Alice was very poorly.  The nurses had dressed up and were trying to keep the children happy and the parents’ spirits up.  They put Alice on a beanbag by the nurses’ station while we went to the midnight service with my parents in St. Christopher’s Chapel.

On Christmas Day after another 3 seizures Alice was prescribed Predinsolone.  It soon seemed to me then like a miracle drug.   Little did I know what the future held and the nightmare it would bring to Alice and to us as a family and how much I would come to hate it.   The seizures stopped!  We returned to our local hospital and went home finally on the 2nd January with the diagnosis “Difficult epilepsy, Epileptic Encephalopathy”.   Here is a picture of Alice struggling to walk as fast as she could to get home and another where she is happy to be home.

While we were in hospital my niece Lucy came to stay with my parents and they went to The Fun House in Edmonton, it’s was an indoor soft-play centre.   This outing was to play an important part in our future.  Here she met Louis Chrysanthou and his lovely wife Ria who became very special friends of ours and gave us a lot of help and encouragement through our difficult times.

A story my Mum loves to tell because she feels it was her first acceptance of Alice’s future:

She was sitting watching Lucy playing, happy to have her to stay but at the same time feeling very anxious and unhappy about us when a small boy rolled across the floor and pulled himself up on her legs.  Louie called across to him not to be a bother and go and play but he stayed holding on Mum listening to her until Louie took him away.  Watching she realised this boy was blind but here he was being treated the same as everyone else and having fun.  She decided then that this was a place she could bring me with Alice and a few weeks later that’s what she did.  Alice was wearing her little helmet to protect her head and after a while Louie came over to talk to us and ask what was wrong with her. He listened and then told us that he ran a club at the Fun House for ‘special needs kids’ and Alice could join.  This meant I would have unlimited free entry.  He told me to never sit at home alone and unhappy.  On my down days I was to bring Alice and all she needed and come to the Fun House where there would always be a welcome and someone to sit and have a cup of tea/coffee or a meal with who would understand.  This wonderful kind and gentle man threw a lifeline to us as a family.  Sadly the Fun House has closed and left a huge gap in many lives.

It soon became evident that something was very wrong with Alice.  I realized she couldn’t hear me, our beautiful baby was deaf.  We went for hearing tests and it was confirmed she was the equivalent to a profoundly deaf child but this was because she had a central auditory processing disorder.  So the help of a hearing aid was not for her.   Her ears were fine but the brain was not processing the signals from the ears back into sound.  There was no advice and no answers.  Nobody knew if her hearing would return or not.   The next year was spent trying to help her recover.  We had teachers of the deaf lying on the floor trying to get her to make eye contact with them.  You see she had withdrawn into her own little world.  We learnt sign language and slowly Alice began to sign:  tree, dog, cat, hungry etc.  She also had occupational therapy and pre-school support.  With all this help plus a lot of love and help from our friends and family she improved a lot and was walking short distances again. The Prendisilone was weaned out and Alice was left on Lamotragine and Epilim .

All was going well until Christmas Eve 2000 when Alice had another seizure . We went to our local hospital and more seizures followed.  Again Alice missed Christmas Day.  A rash developed in A&E they suspected meningitis and she commenced on iv antibiotics.

It took two weeks to get control of the seizures this time and again Alice lost skills.  She developed a problem swallowing and stopped communicating with us.  A nasal gastro tube was put in and we had a Kangaroo pump for food and drink and in time she started to use sign language again.   It was a slow recovery but the good news was her hearing had returned!  This in itself became a problem.  She was now afraid of sound and would try and hide herself in a cupboard at the toddler group when it got noisy.  Time was the healer for this fear and we moved on to having the joy of encouraging her to speak again.

Alice was having a well year and I was delighted to find I was pregnant.  Naturally there was a lot of worry about would the new baby be well but I gave birth to a perfect and lovely baby girl in September 2001 and we named her Lily Margaret.  Alice was so proud of her little sister.  This was a really happy time in our lives.

A year further on it was decided to fit a peg tube.   Once this was done we began to see developmental improvements but running at about 18 months behind.Great!  We had our first Christmas since Alice fell ill at home.  Then on New Year’s Eve she started fitting again.  Another 2 weeks in hospital. We returned home but were then back to the hospital with breakthrough seizures.  Eventually she was again prescribed  Predniselone.  This worked for Alice but at what a cost to us all.  She had awful tantrums and would scream and cry uncontrollably.  To complicate things further she was not processing thirst which exacerbated her severe constipation and had to go through the misery of having a nasal gastro tube again which had to be changed fortnightly.

After nursery and the reception class in mainstream school it was agreed a special needs school would be much better for Alice.  This was excellent for her and for us.  The school gave us an enormous amount of support and Alice got the educational structure and understanding that she needed.  I used to wonder and worry about whether she was happy until the morning I got her old school dress out by mistake.  What a fuss we had, she was crying and I hadn’t got a clue why until she refused to let me put the dress on her and I realised just how happy she was there and that’s not changed, she loves school.

It was around this time she started going to CAPAG, a fantastic voluntary organisation run by parents of disabled children in Enfield during school holidays.  This was such a gift to me, I had time to catch up on ordinary life and spend quality time with Lily.  As soon as she was old enough she was able to go along as well which meant she and Alice made mutual friends of all abilities.

Over the next couple of years Alice went in and out of hospital and different medications were tried with awful side effects for her and for us.  Each time she was ill she would regress for a while.  Speech and mobility continued to be a problem.

That November there really was a sparkle in our lives.  Plus no yearly Christmas illness!  Instead Alice was catching up, oh how lucky did we feel!!We then had a really happy time and went a whole 14 months without a seizure.

During this time realised I was again pregnant.  Alice was very excited about the new baby coming but then disaster struck.  Seizures without illness, lots of them and multiple types.  We went in and out of hospital, more in than out. Then we hit status epilepticus for the first time and a few more times after that.  Alice was not with us at all, medications were increased and steroids started but this time no magic.  They didn’t work and only gave her huge weight gain psychosis and depression.

Eventually she was admitted to GOSH and I rang my Mum to tell her where we were off to.  She asked had I taken “my bag”, you know the one you take in with you when you have a baby.  Angrily I pointed out that there was still 7 weeks to go before the baby was due and no I hadn’t got “the bag”.   I ‘d quite enough to do packing Lily’s bag and arranging her care without worrying about a bag I wasn’t going to need thank you!

My waters broke in GOSH and guiltily I phoned Mum to ask if she could nip around to our home and get, yes you’ve guessed it ‘the bag’ from amidst the muddle in my cupboard.   She laughed and said how exciting it was!   I couldn’t agree!  To me it was another whirlpool in the chaos of our lives.

GOSH staff were as excited as Mum but whisked me off to UCH as quickly as possible where the baby was born and what a surprise it was when it was a tiny boy.  We named him Philip Edward William.

Philip came home but Alice’s seizures continued.  Prendisilone robbed her and all of us of so much.  Her mood was erratic and it was difficult to make eye contact with her.  She was unable to be happy for long.  In fact I feel she was angry, angry because she couldn’t be happy, couldn’t concentrate on anything but food and angry because she was not allowed to eat as much and as often as she thought she needed to.  In the picture below you can see her watching the dinner cook in the oven and she would not move until it was ready.

Soon the weight piled on leaving her breathless and with limited mobility.  She tried to play and be happy but it was all an effort and her unhappiness was having an effect on the whole family.

We had tried Carbamazapine, Topiromate, Keppra ,Clobazam and Phenytoin in previous years.  Either they didn’t work or they had bad side effects but after a lot of soul searching we decided to try Clobazam and Topiromate again as they had the least side effects and thankfully it did the job.  We weaned slowly off the steroids and Alice started appearing as though she was drunk staggering about drooling and having absences an EEG showed intermittent bilateral seizure activity and was accepted on the trial for the MCT diet.

Full of hope my Mum and I went to Great Ormond street Hospital to meet the Dietician discuss the diet.  She wanted to meet Alice and assess her.  It was exciting but also quite frightening.  The thought of a diet taking the place of medication was difficult to comprehend.  I remember Alice eating her packed lunch and by 11.30 am she had fallen asleep on my lap.  We laid her on the examination couch where she slept the appointment away.  I explained that we had got to the stage where she could only stay awake a couple of hours at a time.  She had very little energy and to do anything, like getting through a school day was a struggle and she would lie around at break times.  It was a misery for her.  She longed for the weekends so she did not have to be up early and could have a bed on the sofa to sleep on in the mornings and afternoons.

The dietician told us about the Matthew’s Friends web site and whole new world opened to us.  We were able to make contact with other parents whose children had epilepsy.  All of a sudden there were people who understood epilepsy and the problems families encountered living with it.  This was so helpful!  To be understood, to have someone not only to listen but to speak back, to share the heartbreak of it all with was wonderful because until then we didn’t know anyone who had a child with difficult epilepsy.   Here I learned to have more confidence in myself and recognise my ability to cope and how far we had come.   Not only that, I learned to laugh with others instead of being withdrawn and depressed.

We were invited to a picnic arranged in Surrey and went to meet other families living with epilepsy and the ketogenic diet as well. It was a great day for us.  To be with people who understood how life was for us was such a relief.  It normalised things.  We met so many wonderful people who put others before themselves giving support to families like us.  We didn’t realise then how heavily we would lean on them or how they would be the voices of encouragement and their knowledge of the diet would help Alice during another bout of illness.

A few weeks after the picnic Alice started on the diet.  She was and is very accepting of it, she never cheats and refuses sweets and chocolate which must be very hard for her.  Oh the panic of those early days where I was forever in the kitchen with the scales my best friend.  It was one round of making breakfast muffins, planning school lunches and dinners, worrying had I got it right and was she happy.  I needn’t have worried.  Within the very first week on the diet she appeared to be brighter.  We wondered if we had overactive imaginations but her grandparents and speech therapist were excited about it too.  By the end of first month it was amazing to see the difference in her.   She had more energy, was much more alert and very much happier.  This is Alice wearing the T-shirt my Mum had printed for her:

Twinkle, twinkle our Alice star what a special girl you are! Smiling now with lots to say not having to sleep for half the day. We are happy because we can tell on the magic diet Alice you are well!!!

I got used to preparing diet meals and adapted to batch cooking and gradually we started to share some of it.  Alice will tell you that her Daddy makes her special muffins but her Mummy her yummy dinners.   We had started the diet just before the summer holidays.  I was determined that the other children were not going to miss out on outings because Mummy was tired and tied to the kitchen.   It was a case of being organised.  Certainly not my strongest point but I managed!  We had a great summer at the beach, in the park and visiting friends.

I understand when people feel that the diet is difficult.  For us the gain is immeasurable.  What I would say though is it’s a different way of life.  Once you have mastered it then it becomes easier but you do need to be totally committed.  If I’m honest there were times when I felt despondent, having to always be organised and not spontaneous was not easy for me, but hey, with a few tears along the way we got there.   The alternative for us was unthinkable:  watching Alice fitting and having to have more and more drugs, no longer responsive and unaware of what was going on around her and what she should be doing.

The absences disappeared after two weeks on the diet. Our three month appointment came and it was agreed that we could start weaning drugs.  We walked on eggshells, watching Alice constantly for signs of breakthrough seizures.    She didn’t have any but did have bad dreams, disturbed sleep and a lot of behavioural problems.  The difference in her once she had settled down after the drug wean was amazing!  Three medications have now gone and we are planning to wean out the last one next year.  She has reduced her sleep by three hours a night and no daytime naps, has more energy, is learning to write and is doing very well with her reading.  The tremor in her hands is better and her hair is starting to grow back.   To her delight she now goes to Brownies and is making her own friends outside her special needs circle.

The cherry on the cake I think has to be the last EEG result which was vastly improved. The reason I feel this crowns everything is that it is proven medical evidence for us, for Alice and for the Ketogenic Diet trial at GOSH.

The diet has given us our lives back but for Alice the benefits are immeasurable.  Yes she still has her special needs but she is happy and improving daily.  I think what I’m trying to say is she now has a life.  Philip and Lily can now have fun with their big sister and as for us – we have our little girl back.

A huge thank you to everyone at Matthews Friends.  You have opened the door to a new a life for us.  We have made some wonderful friends.  If it wasn’t for them I don’t know how we would have coped.

Alice has also made friends with other keto children and this is very important for her.  She is no longer one on her own, she has seen her new friends having their food weighed same as her.

Here are a few  pictures from our times together:

Finally full praise has to go to the staff at Alice’s school West Lea , CAPAG and the medical team on Kingfisher Ward, Chase Farm Hospital for their patience and continuing help and support.  They have been beside us through the tough times, learned with us and adapted their busy routines, listened to our ideas and taken on board the diet.  It was a tall order as there are many other children all with their own individual and important needs.  Together we have achieved much.  Just take a look at the result:.  three happy children playing together in the park and for us that’s happiness!!!