This is my 'Why'!!! (Part 2)

Last week I was telling you about my reason for doing what I do. My purpose, my Why. The amount of messages, emails and texts I received was quite overwhelming and I’m very grateful for the kind words and positive thoughts from everyone.

If you only signed up and would like to know what all the commotion is about then  click here for last week’s blog post.

So, where was I? Oh yes, September 2nd.
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.

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 had still 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). 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 a similar storys 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,
John T.