Being the youngest child of a family with 4 kids, Marshall had always been way advanced and very independent until the wheels fell off on the 20th August 2004. Actually just a couple of weeks before that, my husband (Vincent) and Marshall’s brother Dylan witnessed Marshall fall without any reason, but hey what did we know? We thought he slipped on the tiled floors. This went on, one morning, sitting on a mattress watching TV before going off to school; he just went back and hit his head on the tiled floor. Again, you think…… must have misjudged when trying to lie back on the pillow. Marshall played well by himself, always outside and in a safe environment, so we were never watching his every move, but more and more we would hear that scream and come running out only to find again that he was lying face down in the dirt. What do you expect? Kids fall, it’s perfectly normal. Or was it?
Well in was not long after that we got a phone call from his day school…”Marshall has had an epileptic fit”. I didn’t even panic, my knowledge of epilepsy was so pathetic that I never for one minute thought he would ever have another. Besides the school must have confused it with something else, maybe a high temp had caused a convulsion? I was so ignorant. That was the beginning of a very real nightmare. That same day we took Marshall straight to our GP. He examined him briefly and then referred us to a Neurologist. We rushed off to the hospital to do the brain scans as the first step and it was then that we witnessed first hand a grand mal seizure. Marshall was standing by my side while washing my hands in the bathroom, when the next thing, he let off a scream, his eyes rolled back, his head thrust backward and he started making the most horrific noises. Body jerking uncontrollably. I had no experience at all, I just scooped him up and ran to the doctors rooms, shouting to my husband “ITS HAPPENING, ITS HAPPENING”. We spent the night at the hospital during which time he had a further 2 seizures (lasting on average 3 minutes). In the morning, we were given epilem and sent off home. For the first time in our lives we were actually scared of being alone with our own child. We stayed with friends for a few days, just so that we would be close to the hospital. Now that we were watching him like a hawk, we started to pick up the drop attacks. I described to the Doctor that Marshall was having these falls. Just totally random, one minute running, standing sitting… and the next he would just collapse. It was dreadful. The doctor was ridiculous. He just kept telling me, up the epilem to 4ml… to 5ml and so it went on. We then got an appointment with a pediatric neurologist and that’s when a lot of questions were answered. Marshall’s EEG report was horrific. Epileptic spikes every minute and he was diagnosed with Lennox Gastaut Syndrome.
But again, the medicine. We were given additional quantities as well as a larger variety and still no improvement AT ALL. In fact he was getting progressively worse, from an active healthy little boy, he was now so full of epilepsy that he could barely function. He was having anywhere from 15 to 30 drop attacks a day (average of 500 per month) and in just 3 months he had 28 grand mal seizures. His speech became so bad that we could barely understand him. The pediatric neurologist told us about the diet, but recommended that we should first give the medicine more time. But there wasn’t time, our little boy was slowly slipping away. Life was unbearable. He was injuring himself daily, we were in and out of hospital for x-rays because the drop attacks were getting so severe. Some of them were so powerful that from bending forward, he would be thrown backward. His head was swollen and bruised permanently, and his lips and mouth were cut and swollen. Our house was wall to wall with mattresses and eventually we bought him his helmet, which he wore everywhere. We went back to the doctor and insisted on the diet. We were all so well prepared for it, that it was the easiest part of this whole journey. It took a bit of time to get to understand and the first two weeks were difficult, but the improvement was steady and very rewarding. I believe that a specialist in this field should insist on the diet as the first step to controlling difficult to control childhood epilepsy. They tell you it is difficult to manage, they obviously have no idea what it is like to have a child that can not have one day without seizures. To see them falling uncontrollably, unable to play without going through pain. At least on the diet, they get to enjoy their food, because they can chew without having swollen and split open mouths.
Although the diet did not work magically like it does with some children, where their seizures stop within days and they never have another, we certainly had remarkable results. Within the first month of the diet, his seizures (specifically the drop attacks) were reduced to half and from there on they steadily decreased on average between 5 and 10% per month. After 10 months on the diet, the drop attacks stopped completely. This was an enormous milestone for Marshall. It meant freedom. He was able to loose the helmet, sit in the bath un-supported, sit on the toilet and go to the toilet un-supported, eat his food without falling into it, walk unaided, ride on the school bus and go to school again, play on the jungle gym, swim….. The list goes on and on. There were just so many things that he had been unable to do.
HAVING THE DRUGS ON BOARD
We were overjoyed with his progress, but still struggling with the early morning seizures. What we didn’t realize during this time though, was that Marshall was still degenerating quite substantially on a cognitive level. We were so wrapped up with controlling the seizure activity that his mental and physical deterioration was managing to slip past us a little un-noticed. He was still on quite a cocktail of drugs, lamoctrogin, epilem, clomozipan, Zorontin and later clobazam. In April 2005, shortly after finding Matthews friends, we started to wean drugs. It was really only once we started to wean the drugs that we got a clear picture of what was happening with Marshall. We went through an 18 month struggle to get him drug free. On every little reduction, we saw the nasty withdrawal symptoms and then a little more of our boy would bounce back. It was like clock work, to the point where we could literally predict which day to expect the fall out (generally on the 4th or 5th day after weaning). Finally, just days before Christmas of 2006, we took away the last 2.5mg of lamoctrogin and were finally able to say “Drug free”. Marshall had reached another massive milestone.
When Marshall was going through withdrawals, many things would happen. He would grind his teeth, wake up in the night hot and cold, shivering and hallucinating, clutching out as if he could see something and was trying to touch it. He would also experience Non Convulsive Status, which was for us one of the worst conditions to see him in. He would loose his speech during this time, and continuously twitch and jerk. He sometimes wandered around in a trance as if he had no idea where he was or what he was doing. He also had horrific mood swings and a lot of aggression during these times. He was very withdrawn and difficult to communicate with and it was not uncommon to find him trying to have a wee but messing all over the floor and the toilet seat. On one occasion he lost control of his bowels. He clearly had very little control of his actions. He was also more prone to tonic clonic seizures during these periods.
OUR EXPERIENCE WITH CARNATINE
In July 2006, Marshall and I traveled overseas to attend the Matthews Friends conference. It was at this time that we met Emma and Carrie, the dietitian from America. This was also a major turning point in our journey. Carrie took one look at Marshall and told me that he appeared to have low muscle tone. At this point in time, Marshall still dribbled almost continuously. So much in fact that we were changing his shirts frequently and I had been seriously considering that he should be wearing a bib, but felt that he may find this degrading. His mouth hung open and his speech was very poor. Carrie suggested that in her experience, carnatine was the answer to this. We introduced the carnatine gradually to a total of 4 capsules per day (approximately 40mg per kg body mass) and the improvement was amazing. I can honestly say that within 3 to 4 weeks, the dribbling stopped. It was also the last time that he wet his bed. The early morning tonic clonic seizures also slowed down. His speech improved and he became far more energetic. He had reached yet another milestone.
WHERE WE ARE NOW!
Marshall reached his biggest milestone ever. He reached 43 days without any seizures at all and a 100% perfect EEG report last week. Previously he had never made it past two weeks. Unfortunately I have to start counting again due to fall out from flu and a mouth infection, but we know that it will be possible to get there again. Even the Neurologist was amazed and claims that Marshall is now considered as a “recovered LGS child”.
My very special boy is still so dedicated to his diet and has such a will to recover from this severe condition that he has been challenged with. I believe without a doubt that he will fully recover and one day lead the perfectly normal life that he deserves.