Neurological Pathways and Epilepsy... our journey

Monday, September 15, 2014
As many of you know, who have followed us on this journey, when our boy Teddy was 4 years old he was diagnosed with epilepsy.

We were sitting at the dinner table one evening finishing off our summer salad when I looked over towards him and noticed his head turning ever so slowly to the left, his eyes following. It was such an unusual action for him, that I patted him on the hand, which was resting on the table, to get his attention.

There was no response.

We called his name. We waved our hands in front of him and still, no response. That is when I jumped up from my chair and ran for the phone and called the ambulance.

By the time they arrived he was coming out of this absence seizure, but bless their hearts, the paramedics thought it would be a good idea to send him into the main hospital for a check up. When we arrived it was a quiet night. We all gathered in a little room, with our now bright and cheerful son. There were about 3 paediatricians chatting with us, along with two nurses. Teddy was sitting on my knee when he suddenly raised his arms above his head and I felt his whole body stiffen.

I shouted to the doctors to come and get him, and they laid him down on the table while his little body was racked with the shaking and convulsions of a full-blown grande mal seizure.

It was horrible and ghastly, but looking back on it now, one of the best things that could have happened at the time. As one of the paediatricians said to me that night, it's not often they actually get to witness something like that. They are usually called in after the fact.

Teddy having had this massive seizure in front of so many experts meant that he was fast-tracked through the system. And because I was 37 weeks pregnant with Miss A, they took pity on me, wanting to get all the hospital procedures out of the way before our next baby arrived. With an overnight stay, Teddy had blood tests, CT scans and most importantly, a neurologist referral. Everything came back clear, but our journey was far from over.

It took nearly 18 months to get Teddy stable on his medications. Sometimes during that time, he would have dozens of absence seizures over a matter of minutes. He would be playing outside in the long grass when he would disappear from sight and we'd run up and find him seizing. One horrible day he had seizure after seizure. One seizure would exhaust his little body, and he would go into a deep sleep for about 40 minutes following each one. Then he would pop up from the couch where he was lying with a smile on his face. Then half an hour later..... down again. I didn't want him growing up and knowing that it was a handicap - I wanted him to experience life just like any other kid, so that meant getting in the swimming pool with him, it meant standing under him on the playground in case he had a seizure while on the monkey bars. It meant switching from baths to showers. It meant teaching my older children emergency procedures - how to turn him onto his side before even calling for help. We learned how the tongue-choking myth is, mostly,  just a myth. We learned that disorders like this are not environmental, and sometimes the brain won't tell you why it's doing this. We learned how to value each day.

It was a horrible and torrid time. He had lots of prayer from our church family. He had an amazing neurologist who was gentle with him and his approach to medications. He started him on a very mild anti-seizure drug until we found the one that was just right for him. In the end, he was on a high dose of Epilim and a low dose of Ethosuxymide. But at last the seizures were gone.

Finally, we had them under control, and our lives began to return to normal. Teddy was able to go to school, but he had started late. To this day, we are unsure whether the delay in his learning is because he lost a year of crucial milestones - the age of 4 years old when a toddler's learning curve is huge, or if it was due to the toxicity of the medications. Teddy would often talk about feeling 'foggy' in his head. Teddy struggles to follow instructions that are not of the most simplistic. This is something that 4 year olds learn during that formative year. Instead of 'go to your bedroom and bring me your shoes' they learn more complicated instructions like, 'go to your bedroom and put your socks on and then bring me your shoes and your jersey." Teddy missed this development during that year.
He struggles to concentrate for longer than a 5 minute period at school or follow complex instructions.

Thankfully, he is now off all medications. It will be nearly 2 years since his last dose of Epilim. Every day we thank God for this blessing and every day we hold our breath. Thankfulness and fear running on the same tracks.

With teacher aide help and getting him into a good school here in our local town, he has come a long way with his learning. He is just managing to keep his head above water academically, but we have been looking for ways to increase his abilities so that as he grows and merges into the more senior school, where the work is harder and faster, so he will be able to cope and grow and succeed.

This year, he has a young, newly qualified teacher who has been amazing with him. And we have sought expert help outside of school to assist him. We have ruled out dyslexia and ADD and ADHD. He has no behavioural issues, is a social boy with lots of friends, but for some reason he just gets stuck when it comes to executive skills and academia. Sometimes it is hard to know if it's just a boy thing (you know, boys hate sitting still), but we have discovered that it is more than that now - there is a definite delay, not disorder, just that he has a lot of catching up to do.

We have been learning that the brain, no matter how old, can learn new pathways. Our greatest need at the moment is to extend our boy's concentration, so the expert advised getting him book activities that he can work on at home, that spark his interests.

Teddy has an obsession with cars at the moment. Every day he asks me some technical question about 4-wheel drives, or Bugatti Veyron's, and every time I say to him, "I know nothing about this. You're asking the wrong person! Ask Dad when he gets home." But he doesn't give up.

So I did some searching on Amazon and found several books that I hope will help him, and thrill him.

Exotic Cars by John Lamm.
A beautiful, full colour book with written detail about each car. It will be a challenge for Teddy to read this - even though the written portion on each car is minimal, the print is small, but I know he will be keen to read this, and I can see him sitting on the couch reading to us every night. There are facts about each car including the history, the price, the speed, the type of engine, the interiors.... he's going to love it!

And I found him some colouring-in books that also encourage reading and concentration.

Luxury Cars and American Muscle Cars by Bruce LaFontaine, and another soon to arrive on how to Draw Cars by Doug DuBosque. I know he's going to love these books, and hopefully, it will be a small step into extending his concentrations times that will help him at school, and on the way to giving his brain a new pathway.

In learning about these new brain pathways, I have found the book Smart but Scattered really interesting and valuable. It teaches about the importance of structure and environmental security and predictability, helping your child get organised, to follow through on tasks, learn from mistakes and stay in control of emotions.

Some of these books are available through my Amazon Associates link on the side bar, if anyone is interested in them.

If you know of something similar that you think Teddy would be interested in, please let me know! I am always on the look out now, for things that might help extend his learning neurological pathways.


camelama said...

What about actually working on cars? Know anybody who does home car repair? Amatuer racers who do work on tgeir race cars themselves? Etc. Lots of tasks, follow through, steps to follow, listening and concentration. Even uses Math! Learning, doing, proof of success. Dirty fun. ;)

Anonymous said...

What a story! Teddy's question reminds me of myself at that age: "Mommy, where did God stand when he created the world?" — "Ask Daddy when he gets home."

I had to look up a Bugatti Veyron — I've added it to my list for the update of Draw Cars, a little overdue seeing as the current version has nothing newer than 1998. Still, it's one of our best sellers and I'm sure he'll enjoy it!

Rachel said...

Thank you Doug, for your comment. Awesome to hear from you. We can't wait for your book to arrive, and will keep an eye out for the updated version! I'll have to do a special blog post one day on how Teddy enjoys your book, because I know he's going to love it. And I personally know more about cars now than I ever did (or wanted, heehee) before. :-)

Anonymous said...

Rachel, thanks, this response has been very affirming for me. I'll be happy to send you one (or more - share with schools!) complimentary copies if I actually pull the new edition together. My last book, Draw Insects, I did in 1992 or so, and it was really so much fun that I regretted having to finish it. Well, OK, it's one of our worst sellers, but insects are even more awesome than cars ;-) — happy to send you a complimentary PDF or physical book for Teddy. contact201309[at]

Does Teddy have any interest in RC cars? We adopted a 12-year-old boy with seriously limited social skills (southern USA) but who was brilliant when it came to manual dexterity.

P.S. New Zealand is lovely; would have loved to settle there in retirement but for their aversion to old farts: instead landed in Uruguay (now legal citizens).


Heather LeFebvre said...

Good to hear an update on Teddy, especially that he has gone so long now without an episode. That book, Smart but Scattered sounds good -- may need to look into it. I have one that is too concentrated that he misses out on needing to use the toilet. Very hard to know what to do....

Ginger - Just One of the Boys said...

Oh Rachel! I didn't realize that your son has epilepsy! My middle son (Aiden, 8) has it as well. He had those scary absence seizures for so long. Thankfully, it never turned into grand mals, but they were so bad that I couldn't let him ride his bike. He's been on meds for about 4 years, and will go in for a possibly final EEG in December where they may start weaning him off medicine. He also hated to sit and concentrate on anything - especially reading. It wasn't until last year when he broke his back while climbing a tree at his dad's house - that he HAD to lie still. I didn't know how to keep a 7 year old boy like him still. Fortunately, someone gave him the first Diary of a Wimpy Kid book. He flew through that and wanted to read more. He read and reread all of those books while recovering. I don't know what we could have done without those! I love your ideas that you'll be implementing - but maybe keep Wimpy Kid, Captain Underpants, Big Nate as options. :) *big hugs*

Rachel said...

Oh Ginger - I know the excitement but trepidation you feel when they start talking about weaning off meds. It took us a year to wean Teddy - we did it very, very slowly. Let me know how you get on. We have devoured the Captain Underpants books too - just the right sort of book for 8 year old boys, wouldn't you say! Haha. I hadn't heard of Big Nate, so will check those out. Hugs back for you, too. x

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