My little girls battle with illness and a simple cure....
This is the story of Nevaeh (Ne-vay-ah), my daughter and her little battle with what was diagnosed as a serious illness. Enjoy, read with an open mind and really take on board the difficulties parents face when dealing with a narrow minded medical system. When I mention a seizure there is a link to a video of my daughter having that type of seizure. Be warned, some aren't pretty.
Nevaeh started out like any other child. She had a normal delivery and on time. She was breastfed for a few months and developed really well. Her speech came on very quickly and by the age of two you could almost have a full conversation with her. At two and a half she started Montessori and was able to count to 100 and also count to ten in both French and Irish. We thought we had a gifted little child on our hands.
Fast forward a bit to January 2009 and I'm doing CPR on my daughter at the side of the road. WTF??? At this point I'm a paramedic for over 3 years. Stationed in a very busy station and getting tonnes of experience. But when it's your own child, that shit goes out the window. Our protocol is if someone over 39 (I think) has a seizure, it's treated as a cardiac arrest (heart stopping) until it's ruled out. Why? Because if anyone has ever seen anyone go into cardiac arrest and I have on a number of occasions. The heart stops, so blood isn't carrying oxygen to the brain and the patient will have a tonic clinic seizure before going limp. So when I'm driving down the road. My little princess has a full tonic clinic seizure in the back of the car before going limp you can only imagine the shit going through my head.
We had been driving down the road with Nevaeh and the two dogs in the back and in mid conversation she just went into Tonic Clonic seizure (This can also be referred to as a grand mal). This was three weeks before her fourth birthday. We brought her to A&E but had fully recovered when we arrived so not much was done. 1 in 4 children under 9 can have a seizure so there is never really a big deal made about the first one. Up until April’09 she had a few more.
In April we had an appointment with a paediatric neurologist. Before seeing the neurologist a neurology nurse took all our details and Nevaeh’s medical history. We had asked her about a possible link between coeliac disease and Epilepsy but she said she never heard anything like that. The reason we asked is because in my father’s family there is six relatives diagnosed with coeliac disease and it was my uncle who had said to us about a link between the two.
After speaking with the Neurologist Nevaeh was started on Tegratol (A standard Antiepileptic drug). A side effect she experienced to this drug was Myoclonic Seizures or 'Head nods', they last for only a fraction of a second but she was having up to sixty per day.
In June, after 48 hours in telemetry with continuous EEG and Video recording. Nevaeh’s Neurologist took her off Tegratol and started her on Epilum. It was also at this time when Nevaeh was diagnosed with a seizure disorder known as 'Doose Syndrome' or 'Myoclonic astatic Epilepsy' (Worth a Google some very interesting but sad reading). For the next eight weeks my daughter stopped having myoclonic seizures but started having Tonic Clonics again. Maybe 2 or 3 a week. The funny thing about these were that she had them all around the same time, between 1-2am and all while sleeping. The doctors took no notice of this information but ended up being quite relevant to Nevaeh’s normal daily routine.
So we’re now into August, seizures are still not under control and she has been started on Clobazam (a type of Valium) with the Epilum. This was when the fun really started. The 2nd of September 2009 without a doubt the toughest 36 hours in my life. Nevaeh had only started primary school but that morning eating breakfast she had an Absence Seizure. It’s a type of seizure where the lights are on but nobody is home. The video clip at the end will show an absence seizure that I only caught by chance. The trouble with her having an absence seizure was that she would vomit afterwards. She had a couple before school and was vomiting a bit so we kept her out. As the morning progressed she had more and more seizures. By the afternoon we got in touch with the neurology department and were told to bring her into the hospital.
In the children’s hospital she was given some IV drugs but they couldn’t control the seizures. They were hitting high doses, to the point that Nevaeh was now just whacked out of it, not waking up but still having seizures every 20-30mins. After each seizure she was now just dry reaching but never actually came round.
Even though these seizures continued she was put in an isolation room and then POOF, 8pm all the doctors and nurses disappear. Just me and my little girl in a dark room with a single nurse on the ward outside. But the seizures haven’t stopped; she is coming around from time to time but can’t talk or walk and keeps wetting herself.
9pm and the on-call doctor comes down to introduce herself. I explained the day’s events and also that she’s still having seizures but the impression I got was that she didn’t know what to do and basically said not to disturb her unless something drastic happens. Well at this stage we were up to about 25-30 seizures, you’d think that was drastic enough for some attention but wait till you hear what happens next.
So as the night progressed, so did the seizures. They were following every 12-20 minutes apart. So as drastic as this was the on-call doctor was paged twice and over the phone said that if she’s coming out of the seizure she’s alright. Never mind she’s now having full blown tonic clonics every 10 minutes.
At this stage now it’s about 4 or 5am, we’re up to around 70 full Tonic Clonic seizures. I documented and recorded most but it got to the point she wasn't waking up, wasn’t responding to me and all I could do was lie beside her in a hospital bed, hold her and cry. This little girl was my world and now she’s being treated for Doose syndrome and we’re thinking that more than likely she’ll have developmental and learning issues. A year previous she was counting to 100, knew her alphabet forwards, backwards and inside out. We thought we had a little baby genius on our hands and now she's overweight, doped out of it on medication, sleeping 16-18 hours a day and can barely remember her own name.
With 15 years of competitive fighting I’ve been floored, knocked out and choked out but the outcome was never much more than a bit of damaged pride. To this day I still don’t think I’m over the 2nd of September 2009 as my eyes well up thinking back as I write this.
Any father to a little girl out there will relate. You’re superman to that princess, her knight, her prince charming. In her eyes the world is a safe and wonderful place just because you’re there holding her hand. But as I lay in that hospital bed crying, holding my little princess I just felt so helpless, useless. I couldn’t do a thing for her. The most empty and gut wrenching feeling I’ve ever felt to this day.
The next morning after a total of 94 seizures and the neurology team being paged 5 times between 8am and 11:30am. They eventually came down; saw the state she was in, gave her a very high dose of IV Lorazapam and just like that the seizures stopped.
I have since hit the roof about this, lost the head with doctors and consultants but that morning I just didn’t have it in me. I was broken, mentally drained and physically exhausted.
So I rested up, got my shit together and starting taking my daughters health into my own hands.
Something I learned about studying was the bigger the purpose the more information you can read and retain. I regularly woke up during the night and would think of something regarding Nevaeh’s illness. I’d get up there and then, go online and could read for hours. It became the norm that I’d fall asleep in bed but wake up on the couch with the laptop opened in front of me.
The more I studied the more questions or test requests I’d have for doctors. If I got some answers I’d go off and study some more and then come back with even more questions. I was a thorn in their side but I wasn’t going anywhere because over the next ten weeks Nevaeh spent 6 weeks over 4 admissions in hospital. They couldn’t get rid of me. I was living between the hospital and work. My wife was nursing our 3 month old son and our families were helping out anyway they could.
During this period, medication was changed frequently but to no avail. It appeared that different drugs just triggered different types of seizures. A very unusual one was Nevaeh would stop breathing but was conscious and could still talk to me. They even put her on phenytoin, another sodium channel blocker like the Tegratol earlier. Even after I questioned about it causing Myoclonic Seizures, they still went ahead and put her on it. Lone and behold within two days Nevaeh started having the head nods again.
Later we discovered that Nevaeh had a SCN1A mutation (A genetic test that took four months of requesting to be done). This is to do with the sodium channels in the brain and is known to be related to different seizure disorders. People who have an SCN1A mutation are also known to have side effects to sodium channel blockers like Tegratol, Phenytoin, etc.(More info HERE)
In November, a few days after her fourth admission she was put through a Psychoanalyst test. This was to measure her development in a number of different areas of intelligence and education but she failed miserably. She couldn’t concentrate, she was constantly tired and I say at this point her short term memory was non-existent. There was now a concern that maybe Nevaeh had a degenerative disease or was 'Becoming Slow'. One doctor actually said and i quote “She'll never be a doctor but could maybe still be a teacher”. I don’t know how I refrained from flooring him.
We were running out of medications to try and were looking into starting a Ketogenic diet. I’d had enough with the hospital. It was very clear that they were just winging it. We paid to get some tests done privately from blood toxicity, metal toxicity and intolerance tests. Two things we found out was that Nevaeh had a yeast build up in her gut and more than likely had an intolerance to Gluten.
We thought back to what my uncle had told us before about coeliac disease causing seizures in children. So the third week in November i put my daughter on a gluten free diet. Now at this point Nevaeh was having seizures daily or every other day minimum. So when she went a full week seizure free we knew we were onto something.
One week later after keeping her gluten free I gave her a plate of pasta for dinner (100% wheat) and she had three seizures that night. We went gluten free for another week, again seizure free. The following Monday i gave her four slices of white bread over the course of the day and she had one seizure that night.
Since the 8th of December 2009 she has been on a gluten free diet and I'm happy to say since the 8th of December 2009 she is also seizure free. That’s it, no extravagant ending, just gluten proteins. We’d found our trigger. You can learn more on the effects of gluten protein in the body on one of my previous blog posts HERE - http://www.accessfitness.ie/the-af-blog/2014/9/12/gluten-youd-probably-be-better-off-with-the-horse-meat
In the December I stopped giving her keppra, No problems. In January I weaned her off Zaronton, No problems. In February we asked her neurologist to help us to wean her off Epilim but she refused. She said Nevaeh would have to be seizure free for a minimum of two years before they’d consider taking her off medication and told me that she’d be taking no responsibility for anything that happens to Nevaeh if I was to go ahead and take her off Epilim. So we did a slow wean over two months and still had no problems.
In February 2010 Nevaeh repeated the Psychoanalyst test the she had flunked the previous November. Only over two months seizure free and she flew through it. Out of 7 categories she was above average in four and well above average in three. Her reading and maths skills were that of a 7-8 year old (she was only 5 at the time). It was like her brain had been paused a year previous and we’d just hit the play button again.
In total Nevaeh had give or take 2000 seizures ranging from Tonic Clonic, Complex Partial, Myoclonic, Absence, Sleep Apnoea and Apnoea episodes while conscious (You can view the videos here - www.facebook.com/pages/Doose-Syndrome-Myoclonic-Astatic-Epilepsy-MAE/104909412919043?sk=videos&ref=page_internal ). To date (October 2014) Nevaeh is now almost 5 years seizure free and over 4.5 years off all medication. We never had any other issues regarding her development. She is fantastic in school, well above average. Physically she is a brilliant swimmer and now swims on a well-respected team and trains four times a week.
So what have we found? Well nothing really because nobody with any authority or the power to make change will acknowledge Nevaeh’s story even though I’ve been in touch with parents and adults all over the world with similar stories to tell.
In theory though this leads us to believe that people who are susceptible to having seizures like those with an SCN1A or SCN9A mutation, or people who have had febrile convulsions as a child, grew out of them but then started having seizures again in adulthood. Maybe these people’s seizures are just being triggered by other minor problems in the body like Gluten Intolerance or “A leaky gut”, Stress, Alcohol, Drugs or something else.
All in all everyone is now grand. We hit a bump in the road but we got over it. I really appreciate the support of others we had at the time from family, friends and Dublin Fire Brigade. I appreciate the kind words we still receive today. I hope this story will encourage others to always look further than a single doctor’s opinion. There is so much we don’t know that we don’t know. I hope it can inspire you to make change in your life whether we’re talking illness, health or just some bad habits.
This experience is what has given me part of my drive. My drive to help others and make change for the better. Even when I’m an ass I believe I’m doing it in good faith.
I’m always here to help whether people are paying me or not. Just write me an email or send me a text.
As always, Love and Happiness,
Ps: Do you know that there are 42 different types of seizures. Here is a link to numerous videos of Nevaeh having different types of seizures with and explaination of each. Click HERE.