MEET MATTHEW – THE BOY BEHIND THE CHARITY
Me and My Boy, picture taken for a Guardian Newspaper article 2008 – Matthew was 14 years old.
On the 8th September 1994 my world changed forever with the birth of my son Matthew and I learnt two very important things on that day. The first is how to feel total unselfish love and responsibility toward another human being and the second, is that childbirth is definitely over-rated especially when giving birth to a 9lb 14oz boy! His birth was difficult and he had to spend a few days in intensive care because of it and just to check that everything was fine. He came home with clean bill of health.
My boy was gorgeous and everything was good in my world, he was developing normally and I was busy doing all the mother and baby groups and being a competitive first time mum and Matthew wasn’t letting me down either – we were winning all the development races in my group – trust me on that one! But that was all about to change very dramatically and practically overnight.
When Matthew was 9 months old, his dad was giving him a bath when his first seizure occurred. I remember hearing Steve screaming downstairs to me to call an ambulance. I had never seen anything so frightening, and it was happening to my son. The first one lasted for over 15 minutes while we waited for paramedics to arrive and I remember kneeling over him and sponging him down with tepid water and praying to God that he wasn’t going to die. I kind of kept it together UNTIL the paramedics got there and then I completely lost it.
In the hospital, we were told that it was probably a febrile convulsion even though Matthew didn’t have a fever. Maybe the bath had been too hot? That was a guilt trip that Matthew’s father could have well done without as there is no way that he would have made that bath too hot – he was too careful about those kinds of things and it wouldn’t take long for that theory to be blown out of the water.
2 weeks later another seizure arrived in the middle of night, this one lasting over 10 minutes until the ambulance got to us and administered valium again.
This time in hospital they said that although Matthew didn’t have a fever he must have a very delicate temperature gage and he won’t necessarily have to have a high temperature because it will probably be the speed that his temperature goes up that triggers a febrile convulsion, however because of the length of the seizures they were going to put him on Epilim to stop them just until he grows out of them, and the chances are he will have done that by the time he reaches 5 years old. We were given Rectal Valium to administer just in case he did have a seizure and we were to carry this everywhere with us. We were told that the meds won’t have any side effects and he should be fine. We could live with that – it wasn’t ideal but at least it wouldn’t be here forever, so we carried on with our plans to have another child and low and behold very quickly I was pregnant with my Alice, thank God I did fall for her quickly because if I had known what was coming I don’t know whether I would have been brave enough to go for another child.
Needless to say the Epilim didn’t stop the seizures - Over the following 6 months more and more seizures visited, status epilepticus arrived (life threatening prolonged and repeated seizures), medication came to stay and frequent ‘holidays’ to various hospitals took place. I spent the vast majority of my pregnancy with Alice in hospital with Matthew. New words and phrases entered all my conversations, such as tonic clonic, MRI, EEG, complex partial, drops, Sodium Valproate, Vigabatrin, Topiramate, Valium, spasms, jerks and obviously the favourite, epilepsy. My bedtime reading matter went from a good old trashy ‘Jackie Collins’ (no disrespect!) to ‘Your Childs Epilepsy - A parents guide’, ‘Epilepsy - The Facts’, ‘The Epilepsy Reference Book’, ‘New Guide to Medicine and Drugs’ and basically anything that had the word ‘epilepsy’ in it. Knowledge is power and I had to get as much knowledge as possible to try and understand what was happening to my son and therefore, learn how I could help him the most.
By the time Matthew was 15 months old he was having seizures daily, tonic clonics, complex partials, absences and myclonic jerks. He had been formally diagnosed with uncontrolled complex epilepsy, only they couldn’t tell me what had caused it – it was just ‘one of those things’.
I was continually reading everything I could get my hands on regarding epilepsy, contacting every organisation I could find, talking to whoever where- ever, to try and get answers and find out information to help my boy. It was while I was on this quest that I first learnt about the existence of the Ketogenic diet.
When I asked the doctors about it, I was fobbed off and told that there was no real evidence that it worked and that it was very difficult to manage and ‘drugs are the better option.’ Matthew was 2 when I first asked about the diet and over the years I was denied the diet several times by our then neurologist. She just wasn’t interested in talking about the diet or even considering it. We now had a new baby, a diagnosis of Uncontrolled Complex Epilepsy for our toddler, a huge mortgage, no possibility of me going back to work because no one could care for Matthew and we were completely knackered. By this time we were also finding out that AED’s (Anti- Epileptic Medication) DID HAVE SERIOUS SIDE EFFECTS to our beautiful baby boy and we were also watching Alice like a hawk. She would only have to twitch and I went into a state of panic. We were frightened to take Matthew out in the summer in case he got too hot and had seizures, we would lock ourselves up at home, people avoided us – not knowing what to say and not wanting their children to see it. Parents dragged their kids away from Matthew frightened that their children might ‘catch’ it. No more mother and baby groups for me and no more the competitive mum. I just wanted Matthew to get through a day without injuring himself or others with his lashing out. I had to keep his sister away from him a lot of the time. Home life was beginning to fall apart and the stress was unbearable – we had no support and didn’t know what the hell to do next. Everything was just a matter of muddling through.
Time was ticking by, skills Matthew did have were fading fast and still no one could tell me why. Nights were spent in hospital with Matthew in intensive care. Several episodes of status epilepticus had occurred and test after test continued to be carried out.
While all this was going on, the doctors were putting him on drugs, all kinds of different drugs. Some made the fits worse, some made the fits slightly
better, for a while anyway. Some weeks he would be lying on the couch like a zombie and other weeks, he would never sleep and spent all night shouting the house down. Years were spent getting up at 4am, standing in the playpen with the ironing board, whilst Matthew was wrecking the house on the outside of the playpen! The only positive side of all this was that I never had an ironing pile waiting to be done!
His seizure pattern changed over the years, different types came along until Matthew did the full spectrum. He went from seizing at any time to seizing mainly during sleep, so it was extremely rare to have a full nights sleep in our house. He would obviously still throw a few in whilst awake too – just to keep me on my toes!
His mental age was not improving, he was still between 12 – 15 months, and he had no speech and was still in nappies. I was concerned, the school were concerned. There were no drugs left to try, every type of scan had been done on him, he wasn’t a candidate for surgery because they couldn’t pin point which part of the brain the epilepsy was coming from and besides, he now had so much scarring on his brain that it could’ve have been the scarring that was causing a lot of the fits, although it was the fits that was causing the scarring. You try making sense of all that little lot.
Matthew was now 6 and was under Great Ormond Street Hospital and he had made no progress whatsoever. By this time I had watched the film ‘First Do No Harm’ which is based on a true story, about the Ketogenic Diet – so much of the story I could sympathise with, as Matthew and I had been through the same. Whenever I had spoken to the doctors about him trying the diet I was always given the negatives:
a) It was very difficult to manage.
b) It was extremely unpleasant and unpalatable for the child. He could end up vomiting all the time.
c) Although some success had been achieved with the diet, it was just not as effective as drugs and it was a very ‘old fashioned’ form of treatment.
d) Considering that Matthew loved his food so much and was in good health otherwise, did I really want to put him through all that for something that probably won’t work anyway – “you have to think of his quality of life Mrs. Williams”. – Thanks, more guilt, just what I needed.
The agencies involved with Matthew were making noises that he may need to go into a home before too long as he was a strong boy and getting so difficult to manage. The prospect of having to make THAT decision was breaking my heart, my boy was supposed to be at home with me and his sister, not anywhere else.
Doctors had spoken to me about the fact that it was ‘unlikely’ that Matthew would make ‘old bones’ due to the amount of seizures he was having and I was aware of the syndrome SUDEP (sudden unexpected death in people with epilepsy) which is similar to cot death – and unfortunately Matthew fell into each and every one of the high risk categories. I was told that IF Matthew made it to the age of 12, then that would probably be the time when he would need to go into a residential home. It seemed like I was facing the option of Matthew going into a home or dying by the age of 12. Again, it was just heartbreaking.
Matthew was now coming up 8, his father and I had separated, pending divorce – the stress of the past few years finally taking its toll on us, so now I was a single mum of two kids, one of whom was deteriorating at an alarming rate. At yet another appointment with Matthew’s Neurologist at Great Ormond Street, AGAIN I asked about the Ketogenic Diet and she then told me about her colleague, Professor Helen Cross who had recently started doing a clinical trial on this Diet and if I wanted, she would be happy to put Matthews name forward for it. I practically bit her hand off saying yes!!! It was my last hope there was absolutely nothing left to try and Matthew’s epilepsy was worse than ever.
An appointment was made and I met with Professor Cross, Liz and Hannah - our Keto Team and they took me through the trial, the diet and of course the paperwork - there is always paperwork lets face it! It was a very daunting prospect I have to say. I knew I had to do it but to say that I was not looking forward to it was an understatement. I worried how Matthew would cope with it, after all, my boy had an extremely healthy appetite and ate very well, would it make him really miserable not being able to have all his favourite things? Would he be hungry? How were his sister and I going to eat in front of him? Food was also a way I could nurture him and show him how much I loved him by giving him his favourite things and making sure he had a good diet. I worried about the restrictions it would create - no more school meals, how would he be able to go to respite once a month? What if the respite centre weren’t prepared to take him whilst on this diet? All kinds of things went through my head.
Nevertheless, I still knew that whatever it took, it HAD to be done - it was the only hope I had left.
Matthew could’ve started the diet in May 2002, but I held off for a couple of months. I cleared the decks at home and my diary - if I was going to do this, I was going to give it 100% and I wasn’t going to allow anything else to take up my time or energy. I also thought it best to start it when Matthew was with me all the time so I could keep a close eye on him. The summer holidays started and so did the Classical Ketogenic diet!
The first two weeks I can only describe as a bloody nightmare! It seemed as if I spent all day every day in the kitchen preparing Matthews meals - which were tiny by comparison to what he had been eating. He was grumpy and miserable. He spent most of his time shouting and seemed extremely unhappy. He was still having seizures so he was either shaking or shouting! The guilt I was feeling was terrible. His sister and I didn’t eat in front of him, we were reduced to eating the odd bar of chocolate on the toilet!
After the first 3 to 4 days he started to calm down. Over the next few days he calmed down even more - so much so that he just lay on the settee. He was eating the meals I prepared for him but the dirty looks I was getting from him were something to behold.
I was still living in the kitchen in between dealing with Matthews seizures and being on the phone to either Liz or Hannah at Great Ormond Street - I must’ve driven them mad. Matthew had calmed down so much by now that I was having problems waking him up - he had stopped drinking and was becoming dehydrated. I was syringing fluids into him as much as I could but it wasn’t enough. Matthew had now gone into excess ketosis and metabolic acidosis.
On advice from Hannah during what must’ve have been my tenth phone call with her that day - I called an ambulance. The blue lights appeared and the entire neighbourhood came out to wave us off!!
On the way to hospital the paramedics gave Matthew some oxygen, which seemed to perk him up a bit. They called the paediatrician to see him and obviously I went through the details and told him that Matthew was on the Ketogenic diet - to which I got the response ‘the what diet?’ - A response that I have now grown accustomed to.
Whilst waiting in A&E Matthew decided he was thirsty and proceeded to drink a very large cup of his juice and then another! The upshot being that he was as bright as a button 15 minutes later and no IV was needed. After all, he had had a good long sleep during the day, a ride in an ambulance with blue flashing lights and sirens going, a good whiff of oxygen and a couple of large cups of juice - little boy heaven I think it’s called! I, on the other hand, had reached the ‘lost the plot’ stage and was eyeing his rectal valium up longingly - the only thing that stopped me using the stuff was where I would have had to have shoved it!
My mother collected her lively, bouncing, smiling grandson and ‘heap’ of a daughter from the hospital and took us home, where the obligatory cup of tea and cry on my mothers shoulder took place before weighing out Matthews Tea, bathing him and putting him to bed took place. My Alice didn’t bother asking me ANYTHING that night as she wasn’t getting any sense out of me at all, but thankfully she had her Grandma there! After the jobs were done, I locked myself in the bathroom and soaked in the tub, again having a good cry, wondering what the hell I had embarked on and day dreamed about Barbados. I wanted to be as far away from epilepsy and the Ketogenic diet as possible – it didn’t work, when I opened my eyes I was now sitting in a very cold bath with VERY wrinkly skin – lovely!
I got up the next morning and braced myself for the new day that was beginning and wondered what it would have in store for us today - what an adventure! My lively, bouncing, smiling son also got up and he stayed that way all day, the only thing that wasn’t right about Matthew that day was his seizures - he didn’t have any.
He didn’t have any the following day either or the one after that. I got to the point where I was almost frightened to breathe just in case it set him off again. I couldn’t believe what I was seeing.
He ate all his meals, was happy, calm, sleeping well and waking at a more reasonable hour instead of the 4(ish) I had grown used to over the years - it was now about 6.30am - far more dignified. He didn’t have a single seizure for nearly 2 weeks. Then he had 1 tonic clonic and that was it for another couple of days. Then he had a couple of absences and that was it for a few more days.
My time in the kitchen was now greatly reduced too - I had got to grips with the diet and had got myself organised. Vegetables were steamed and batched; meat was weighed and batched, as was puddings. Spare Ketogenic meals such as quiches were made and frozen in case of emergency or a sudden packed lunch being needed.
Matthew went back to school and in with him went his lunch every day. He went to respite too. I prepared a file which contained copies of all the information on the Ketogenic diet, a shopping list, helpful hints to make things easier whilst managing the diet, meal plans where I had worked out all the weights on everything for his meals - as long as the respite centre followed my meal plans to the letter there would be no problem with Matthews diet. They were more than willing to do this and before Matthew went, I visited the centre and went through everything with them. I gave them all the details and information that they needed. They were brilliant.
After a very shaky start culminating in a hospital visit - we have never looked back. From having between 10 and 20 seizures per day, Matthew now has, on average, 3 per week - some weeks we have none at all, some weeks we have slightly more – but we have NEVER gone back to the amount he used to have when he was just on medication.
Talking of medication, he WAS on 600mg of Gabapentin per day and 200mg of Topiramate per day. He would also have clobazam at times if he was having a particularly rough patch or he would have clonazapam. He would also need rectal valium at frequent times too and I would also carry Paraldehyde everywhere with us if the rectal valium didn’t work. He now had NOTHING. All medications had been thrown in the bin - the only thing I kept in the fridge was rectal valium - just in case and occasionally I did have to use it, normally when Matthew was building for a change in his diet following a growth spurt or when he is not very well, but again it is no-where near the amount it used to be.
After a few months on the diet he called me “mum” for the very first time - I didn’t stop blubbing for about 4 days - no money in the world can buy that feeling. When he comes home on his school bus and sees me coming to get him, he says ‘mum mum’ – I feel like I win the lottery every day.
He made more progress at school in the first 6 months of being on the diet than he had in the previous 6 YEARS and they were delighted with him. All talk of Matthew going into a Residential Home also stopped – no need...my boy is staying at home with his sister and me.
There have been rough patches on the diet when his seizures have increased – like I mentioned earlier – when Matthew wason a growth spurt things had to be re-jigged and when he is unwell he will fit more, even now. But the rough patches we have now are no-where near as bad as they used to be before going on the diet.
A ride in my friends sidecar with my sister
For me, the diet did mean that I always had to be organised as far as food was concerned, I had to make sure that I had everything in that I needed. I could never take a day off from the diet and I couldn’t just hand it over to someone else and say ‘get on with it’ – not unless I have trained them up first, but thankfully Matthew has an excellent Godmother that would help and a first class carer, who is also called Emma (funnily enough!)
I had to be vigilant that he ate nothing else. I must have been the only mother in the world that told other children NOT to share their treats with him, although I have to say that Matthew did not even try to eat any other food, it is like he knew that what he ate was helping him and making him feel better.
I love my Uncle Gareth!
Whilst on the diet we tried to do everything any other family would do...he had a birthday party like any other child and I had all the family round and out of respect for Matthew, we all ate Ketogenic food – I made sugar free jellies, peanut butter sandwiches (using lettuce instead of bread), dips and of course, birthday cake (Yes, a ketogenic chocolate cake CAN be done). He had a great time and so did we.
I love my sister too!
We would go and stay with friends and family for weekends, we go out to restaurants – what did he eat I hear you ask. I would phone the restaurant first and explain the situation and take his food in with me where they heat it up for him. If any restaurant refuses to do this, then obviously we don’t eat there (and I then phone the local paper and completely trash them!!! What can I say – I get annoyed with small mindedness.)
Mums not bad either!
I am not an unrealistic person - I know that this diet will not work with every child who has epilepsy - but it is worth a try - there is nothing to lose and everything to gain and just to dispel a few earlier negatives:
a) It does not have to be difficult to manage. It can be daunting at first but it doesn’t take long to get into the swing of things. Once your confidence builds it is about as difficult/time consuming as making up babies bottles once a day.
b) Unpleasant and unpalatable – it can be if you just swamp everything in double cream, but it really doesn’t have to be. There are loads of recipes/ideas that can make lovely meals that your child can enjoy and you don’t have to be a Chef to be able to do it (but we do have one of those here at MF if you need it!)
c) Old fashioned and not effective – it may be considered ‘old fashioned’ but it works. As for not being effective – it won’t be for every child, but then again neither are the drugs, but it IS effective for some and I will quite happily argue until I am blue in the face with ANYONE that tries to tell me any different!
d) Quality of life – Matthew has the best quality of life he has ever had and so do we now.
Matthew had been on the Ketogenic Diet for nearly 4 years and he was coming up 12 years old, due to puberty and a really restrictive amount of carbs, his dietitian and I decided to change him from the classical version of the diet to the MCT version of the diet, which is a little easier to do and he was allowed a lot more food – he couldn’t believe his eyes (or his luck) when he had his first meal that contained chips!
Some children need only be on the diet for a couple of years and can then be weaned off and their seizures will never return. Matthew has never been completely seizure free but that was never my aim as I knew how brain damaged he was, I just wanted him to have the best quality of life he could have and he certainly got that. The reason that I didn’t try to wean him off after 2 years on the diet is simple...it was FEAR. I was terrified that if I weaned off the seizures would come back and there was no way I could face going back to how things were with him. Besides, he was healthy and happy and the MCT diet was a lot easier for us so there was no need to wean him off.
Just after another 2 years on the MCT version of the Ketogenic diet, I made the decision to try and wean Matthew off the diet with the understanding that if things got a lot worse we could put him straight back on. Professor Cross and I made a plan for him and I started to wean. His growth had been affected due to the diet but we weren’t too worried about that – he was doing okay so having to sacrifice a few centimetres growth didn’t seem too much of a hardship. We also thought that we would give his body a bit of a break from ketosis and see what would happen. I have never been so scared.
We weaned off and I didn’t go mad with the carbs, just added a bit each week and took down the percentage of MCT. He did fine and nothing major happened apart from the fact that once off the diet he grew like a weed. He shot up in height and quickly made up for all the ‘reduced’ growth he had on the diet.
Over the next few months I noticed that his seizures weren’t increasing in number, but they had in length of time. I wasn’t happy about this and again discussed things with Professor Cross. As most of Matthew’s seizures are at night, we agreed to carry on with his ‘keto break’ for a year, put him on a little bit of Valproate (Epilim/Depakote) to see if it would bring the length of time down – if I noticed any adverse reactions to this I could stop the medication and we would have a re-think.
Matthew started on a really small dose of Epilim and it did help reduce the length of time and no side effects were witnessed with him due to this med. I could live with that, although putting a med back in felt like we were taking 10 steps back and it felt awful at the time, a bit like failing – but that is not the case – it was doing what was best for Matthew and giving him the best quality of life and because I now had a neurologist with whom I could discuss worries and fears and she would listen and work WITH me, I felt far more in control and confident about our future. Besides, this was just a keto break... I would be taking him off meds in a year and putting back on diet.
We are still on that keto break!
He is still on his really small dose of Epilim and doesn’t need anything else – we can live with that, but always at the back of my mind I have these diets to fall back on in case things get worse again.
I also FINALLY had a proper diagnosis for Matthew – he has Dravet syndrome and the gene mutation has been confirmed. All those years of searching and when Matthew was 14 years old, we finally get the answer. NOW I understand why some of the drugs reacted so badly with him.
Matthew’s seizures are still small by comparison to pre-diet days – about 70%-80% reduced and are not very long and mostly at night . We can live with this. The sad thing is that over the past couple of years Matthew has lost his ability to walk, this doesn’t happen to every Dravet kiddie, but their walking can be affected and because Matthew had so much brain damage due to all the earlier seizures it has obviously had a knock on effect. He can do a mean crawl around the house though! We have a big fancy wheelchair now with a motor attached to it (saves my back!) and Alice and Matthew have great fun whizzing around the shopping malls.
It is the care side of Matthew that takes the time now and is the biggest factor in our lives – not the seizures – a massive turn around from pre-keto days.
Matthew no longer goes away to respite as he is happiest at home, so his fantastic Carer Emma, who is still with us, comes in and looks after him when I am away on MF business and they have a great time.
Matthew is 16 in September, he is nearly 6ft tall and is as strong as an Ox – a massive achievement for a boy that had years of devastating seizures and who was written off by professionals at one point being deemed either dead or in a residential home by the age of 12.
We are celebrating big time this year and there is not a day that goes past when I don’t thank God for this diet – it saved this family and gave my son the best quality of life he has ever had.
We WILL NOT stop until everyone that wants it, gets the same opportunity of a chance at a better life.
Founder/Chief Executive – Matthew’s Friends
Parent Representative - KetoPAG
BIRTHDAY BOY – September 8th 2009 – Loving those presents and thinks that it is all very funny!
Me and my sis – 2008
Alice and me, Christmas morning 2007 Santa had visited us!
Going up on the London eye with my sister and her friend Daisy
On a ride at Chessington with my mum!
Meeting Two England Rugby Legends!
Not impressed with Wills Elvis Impersonation!
Hey look, it’s Brian Moore – how cool is THAT!
The Williams Family!
At my 13th Birthday Picnic with one of the MF Regional Co-ordinators – Liz (Alice Tiernan’s mummy)
With my mate Marshall from South Africa and Leigh, his mummy – they now run Matthew’s Friends in South Africa.
FINALLY.... The inspiration behind this Charity....
Matthew with the ‘DADDY’ of keto – Jim Abrahams of the Charlie Foundation – at the Matthew’s Friends conference in 2007