Euan’s Story
Euan first started showing signs of having epilepsy at 21 months old. Up until then, he had been a completely “normal” happy, very intelligent little boy.
On 8 March 2006 we saw a look of sheer terror on Euans face, in reality it only lasted a few seconds, but to us, it seemed to go on for a few minutes. That was the first time we saw our boy having a seizure, which we obviously didn’t realise. This happened a few times, gradually increasing in number day by day. By 17 March Euans episodes of staring blankly and looking terrified had become so severe that after each one he would just collapse onto the floor and sleep for anything up to 2 hours. We were obviously extremely worried as we had no idea what was happening to our precious son.
On 18 March, a Saturday, the worry became too much and we headed to Ninewells Hospital in Dundee. The medical staff there told us they thought he may be having some kind of seizures, but without seeing anything happening, they couldn’t be sure. One of the doctors did eventually see Euan having one of his episodes and asked us to video any more episodes of this kind at home, which we managed to do, albeit very upsetting for us to do so. Euans seizures started to become longer and deeper and on the night of the 18 March, Euan slept for 14 hours. I had to wake him in the morning and when he had only been up for 15 minutes, he had another deep seizure and again fell asleep.
The following Monday, Euan had again only been up for 15 minutes when he had a seizure, we were beginning to wonder if a pattern was forming. We had been told on the Saturday that if Euan had five or more seizures in any one day, we had to take him straight back to hospital. On Monday, this happened and away to hospital we fearfully went with him. When there, we felt like we were on a viscious roundabout and couldn’t get off. The doctors, once again had a look at him, but they tried to reassure us that it wasn’t serious and again told us they still were unsure of what kind of seizures he was having and sent us home again. They hadn’t yet watched our videos of Euan.
Things carried on the same until the Thursday, when we took Euan back to hospital again for an EEG which we, at that time, had absolutely no knowledge of, so the countless wavy, spikey lines on the screen meant nothing to us. We brought our boy back home with the lovely sticky, spiked up hair do from the gel and again carried on watching Euan progressively getting worse. That night Euan, unbeknown to us, went into clinical status. When we got him up in the morning, he was unresponsive, we couldn’t get him to eat or drink anything, he was violently sick a few times. We had been told to take Euan back to hospital on the Friday at 11.00am. At 8.30am, we decided he needed to be there sooner. When we arrived at the hospital, a doctor took one look at Euan and before we could ask what was happening, he was whipped out of his pushchair and the doctor ran through to HDU with him in his arms followed by an army of nurses. When we got through to HDU, Euan was already hooked up to what seemed to be countless machines. We were told we could stay with him, but to please keep out of their way so they could work on him, all we wanted to do was pick him up and cuddle him. We could hear all the medical jargon, but we understood nothing.
A senior consultant was called, Dr Kirkpatrick who ordered an emergency CT scan to be done. We kept hearing that Euan needed IV diazepam, but it seemed to be taking ages for him to get it. In our minds, we just wanted him to have it and wake up again. Eventually the diazepam was given and Euans jerks in his arms and legs began to stop. Those jerks are the most horrendous things I had ever experienced, totally unnatural. We were told that Euan was going to be in hospital for quite a while and the Epilepsy Nurse, Karen Lawrence took me to one side, had a quiet talk with me, tried to explain things to me and showed me around the ward. In this time, Euan had been rushed away for his CT scan, luckily Martin was still with him. Karen and me literally ran through the corridors to catch up with them, but when we arrived, Euan was already in having the scan. I had to wait outside to see what the outcome of it would be. Eventually, Martin appeared, crushed, followed by our lifeless son on a huge bed, still hooked up to loads of machines.
Back in HDU, all we could do was watch as the doctors desperately tried to help our son. At one point, CPR had to be used on Euan because his heart rate was going down too much, too quickly. At this point, we really thought we were losing him. We sat, silently sobbing, hoping and praying for a miracle. What seemed to be hours passed us by, when eventually, after the doctors’ tireless work, we saw a flicker of light. They had told us to keep stroking Euan and talking to him, which we did and at this point, Euan slightly opened his eyes, looked at me and said “hiya!” This was one of his favourite words he had learned so far. He then closed his eyes again and fell back into a deep sleep. We were overjoyed at seeing some sign of improvement. Again, the time passed with Euan still sedated, but by the evening, he was beginning to wake up. He sat up on the bed, looked at us with such big bright eyes, saying “hiya” to anyone he saw. A little while later, as Euan hadn’t eaten all day, we were told we could try him with something, but were warned that because of the diazepam, he might not feel very hungry. Euan devoured a cheese sandwich and sat tucking into a huge chocolate muffin whilst Martin and myself were a crumpled mess in the corner of the room!! At this point, Euans Granny and Granty appeared to see him and were absolutely shocked to see our “poorly” boy looking quite happy with his little self. This was the beginning of Euans and our horrendous epilepsy journey.
The following day, Saturday, Euan was out of HDU and on the normal ward and he was enjoying running around and eating anything in sight!! We were allowed to bring him home on the Sunday evening with a small dose of Sodium Valproate. We had to take Euan back to hospital on the Monday, just for a check up appointment, Dr Kirkpatrick was happy with Euan and we were, once again, allowed to bring him home. On the Tuesday, Euan didn’t have any seizures at all and we, still slightly oblivious to the severity of this epilepsy, were happily thinking this was the start of Euan getting better. How wrong could we have been.
Things didn’t settle down, Euans seizures became more frequent and aggressive. The day before his 2nd birthday, Euan had a seizure in the bathroom, fell and banged his nose and I had to once again, take him to hospital as they thought it could be broken. This kind of event became normality for us and as hard as it was, we just carried on with things, trying to keep some sort of semblence.
In April, we travelled back to hospital, car on autopilot, to get the results of Euans MRI scan. Luckily it was clear, this was the first bit of good news we had had in a long time. But, however, as Euan was fitting every hour, the decision was made for him to be admitted for a few days. He was closely monitored with every seizure written down and he was put on 2 new drugs, Clonazepam and one of which had only ever been used by one other child.
These seemed to be working, but he was extremely wobbly on his feet and very tired all the time. Because of this and the constant fitting, Euan had to wear a protective helmet. My beautiful boy was slowly disappearing and being taken from us by this evil condition. The improvement we saw with the two new medications was short lived.
On 1 May, at yet another hospital appointment, we were informed that if Euans drugs didn’t start working for him, he may have to have brain surgery. This completely floored the two of us, we were absolutely devastated.
The days passed, all blurring into one. Countless trips to hospital for admissions, changes in treatments, increases in drugs, changes in the types of seizures, etc etc. Euan has experienced various types of seizures – absences, generalised seizures – tonic clonic, complex partial seizures, this is how Euans epilepsy first showed itself, as complex partial seizures, he would stand, then circle round and round, then hit the wall. Euan has been on so many different medications that I honestly cannot remember them all, but I do remember the Phenobarbitone and the Phenytoin having horrendous side effects, the Phenytoin kept Euan awake until the early hours every night, which in turn made him so tired the following day, that he had more fits, a viscious circle.
On 10 May, Euan was started on a 2 week course of steroid injections, we seemed to be running out of options. After the 2 weeks and no improvement, as the wean of the steroids was such a slow one, I learned how to give the injections, this made life slightly easier. At this time, Karen Lawrence came to the house to have a chat with Shaina and Grant (Euans big sister and brother) and she very patiently explained to them about Euans epilepsy. They understood a lot more about it after this and didn’t seem quite so scared about things.
Later in May, after yet another EEG, the results were horrendous, to us it showed that Euans brain was being taken over by epilepsy and we were told that if things didn’t start to improve soon, he would start to regress. Again we were told that Euan may have to have brain surgery sooner rather than later. Our lives were now revolving around this damn epilepsy.
By now, Euans development, as much as we hated to admit it, had plateued. All of his toys in the living room which he used to love playing with, were now just collecting dust and his speech had completely gone. Our once bright and bubbly boy had been replaced by a sorrowful soul who slept the days away.
Due to the steroids Euan had ballooned to such a size I found it hard to lift him. He was now having between 40 to 50 fits a day and in June he ended up back in HDU for 17 days, hooked up to IV Diazepam once again, which did eventually start to reduce his brain activity. During this time, because of so much brain activity and the drugs, Euan didn’t even recognise us, he was unable to make eye contact and he lost the use of both his legs and his right arm, it was so upsetting to see our poor boy in this horrible state, but for his sake we just had to keep trying to get some reaction from him.
On day 17 of being in HDU, I was told I could take Euan home for the weekend, but I had to go back in on Monday and be prepared to stay again. Before we left the hospital, I had Euan sitting on the floor and I was trying to get him to play when completely out of the blue, he started to giggle, he hadn’t even so much as smirked for so long and now he was giggling harder than I had heard in a long, long time!! That was the beginning of us getting Euan back again. When I got him in his seat in the car, he beamed, it was just as if he realised we were going home and he was so happy.
Once home, I was determined to get Euan walking again. I placed him on the living room floor and I went into the kitchen to get something and I heard a shuffling sound. I turned around to see what it was and I saw that Euan had dragged himself through to me like a seal, it was so hard for him as he was still very large due to the steroids, but he did it. All weekend I worked him hard, teaching him to walk again like you do with a toddler and on Monday when we went back to hospital, the medical staff were all absolutely gobsmacked to see my boy walking, albeit slowly and awkwardly, but he was still walking. After Dr Kirkpatrick saw the huge improvement in Euan since the Friday, he agreed that Euan was obviously going to get better a lot quicker at home, so we were allowed home again with daily phone calls to the ward to check in.
Euan continued to improve, as he lost the weight gained from the steroids his walking became more normal again, his seizures reduced greatly and he was more like the happy, bubbly boy he used to be. He was even trying to say a few single words again. Eventually our prayers had been answered, Euans seizures stopped completely and our world was slowly being pieced back together again.
In November, as Euan was still fit free and doing so well, Dr Kirkpatrick decided it would be a good idea to start to wean the Sodium Valproate which Euan had been on since the very beginning. We were obviously concerned about this, but we were reassured and told it was the right thing to do as it looked like Euan may have outgrown his epilepsy, even though nobody, nor any tests could tell us how or why it may have started. This turned out to be one of the worst decisions we felt we could have made, as after Euan being seizure free for 4 months, on New Years Day 2007, the fits returned. Our world was once again turned upside down.
For the next 20 months or so, our lives were just eaten up by watching Euan fitting, getting slightly better, then worse again, he had numerous bouts of NCS which made him so wobbly on his feet that he wandered around like a drunk, he was black and blue from head to foot from having no balance and falling over and into things all the time. He has had his head glued 3 times, as well as his eyebrow and so many black eyes and bloody noses we have lost count.
In the sheer depths of desperation, Karen Lawrence told us that Emma was coming to Dundee to give a talk on the Ketogenic Diet which at 7 and a half months pregnant with Caileen, myself and my Mum went along to. From that day to this we see Emma as our saviour, she gave us the knowledge and the encouragement to insist our son was at least given a chance to try the diet.
We were lucky in the fact that Dr Kirkpatrick was very much in favour of Euan starting the diet as quickly as possible as Euans development had suffered greatly and he felt there was a good chance it could work for him, he really fought for it as he felt it could be detremental to Euans future development.
Euan started the diet on 7 January 2008 and we began to see improvements in his behaviour straight away. His behaviour had been nothing short of horrendous due to the side effects of his various medications. Within just a few days, Euan calmed down and was actually starting to “play” again, I phoned everybody to tell them, I was so happy with him and he was so much happier in himself. Seizure wise, they reduced from between 4 to 6 down to between 2 to 4, which doesn’t sound very dramatic, but it was an improvement.
Things got better and better over the next few weeks until Euan picked up a tummy bug, then seemed to have an endless stream of coughs and colds, so with him being poorly for quite a while, the diet appeared to us, not to be working as it did at the beginning. Euans behaviour started to revert back to the thuggishness we had experienced for so long pre-diet and I have to say I started to lose heart with the diet. However, after a very tearful phone call to Emma, who put me back on track, I pulled myself together. Eventually Euan became well again, no more illnessess and we saw the diet start to work its magic again. The 22 August 2008 was the first day of Euans fantastic improvement which we feel is all down to the diet. This is 16 January 2009 and Euan is now on day 148 completely seizure free!!!!
We have our wonderful boy back, yes, he still has quite a way to go to catch up with his peers developmentally, he will be 5 in April, but he is still working his way through the terrible twos, I think we are nearing the end, at least I hope so!! With this in mind and with everything he has been through, he is still and always has been a “normal” little boy. He is starting school in August, just like any other 5 year old does, he will need extra help with certain things, but he certainly isn’t stupid. He understands absolutely everything to the point of being slightly OCD’ish on things, like clearing the table after meals, loading the dishwasher, making sure everything is in its correct place, all of these things, Euan does himself.
We definitely feel we wouldn’t be where we are now with Euan if we hadn’t been given the opportunity to try the diet. We are so grateful to Emma and everybody at Matthews Friends for all the support which has been much needed on occasion, but mostly for the friendships we have made through the diet. Our children are all such special people and they deserve the best there is out there for them. We would 100% recommend anybody with a difficult to control epilepsy to at least give the Ketogenic Diet a chance, it has worked for our son, we are now enjoying seeing him enjoy life again, which is absolutely priceless.