On Tuesday 22nd July, Asher had an appointment with her neurologist at the hospital. Thankfully I managed to get an appointment with our chiropractor for Brendon just before lunch - so he took the day off and got to meet the doctor for the first time. Ruth also came with so that she could get to her ballet lesson on our way home in the afternoon. The photo is of her in the waiting area making a pot xylophone. :-)
Again there were so many prayers answered for this appointment. The doctor did suggest upping Asher's medication "if that was ok with us". I appreciated this simple addition to the sentence as he really does appreciate (and agree) that we want to keep medication to a minimum. We discussed what has happened with Asher over the last 3 months and together came up with a plan.
Back at the end of March, Asher got onto a high dose of glyconutrients (2 tsp a day). At that point her 3 months solid of 2 weekly pattern of having seizures was broken and she went 5 weeks and then over 6 weeks between seizures. I then started seeing if we could reduce the glyconutrients and took her down to 1 1/2 tsp and then down to 1 tsp. Unfortunately seizure activity picked up and it was only 3 weeks and then 10 days and then only 4 days. So we got her back up to 2 tsp a day. The doctor agreed that it would be good to see if this is a key to getting her to go nice and long again. So he is happy for us to give it a bit of a trial first.
If however there is not good control of seizures within the next couple of weeks, we will try giving her Vitamin B6 as an extra "medication" and trial that for 4 to 6 weeks before upping her AED. So it's great that we all feel good about the plan and I am thankful for the doctor's openness to look at more natural ways to help her.
I also let him know that we have gotten Asher onto a grain free diet after reading about this by a fellow neurologist, Dr. David Perlmutter, in "Grain Brain".
On Wednesday 23rd Brendon went to pick up our beef on the way home from work. I took Asher outside for a swing while we waited for him, but I miss timed how long it would take (as the butcher had a nice long chat with him). So Asher ended up having at least half an hour in the swing while we waited for him. I kept asking her if she was finished but as soon as I tried to take her out she would push my hands away. So it was only because going to say hi to Dad was better than swinging - that I finally got her out the swing.
On Thursday afternoon I took her out again for a swing but made sure she would only get 5 minutes before Brendon got home. We then had something for afternoon tea and during this time Asher started having a seizure which lasted about 6 or 7 minutes. It was again different to any that she has had before. She sure does keep everyone guessing.
With the swinging now fresh in my mind I started thinking back to previous events.
This time the swinging had been 1 day before.
With her seizure on Tuesday 15 July - 2 days before she had been swinging for well over half an hour while I worked in the garden.
With her seizure on Monday 9 June - 3 days before she done all that fast sliding at the museum.
Even with the tiny seizure on Tuesday 3 June - 4 days before we had been at those different parks and she had done a lot of sliding and swinging.
I had a look now on my blog to the previous seizures on 17 April - and you guessed it - 5 days before that I had blogged about her deciding it was time to "practice her rolly pollys" and she did so much rolling that day.
I remembered back to last year when on two different occasions I had been playing with Asher - rolling her side ways (once on the trampoline and the 2nd time on my bed). Both times she had immediately started pulling to the side with her eyes pulling off to that side (as she often does during her seizures). So I made the mental note to never do that again. Up until recently though - I had never thought of the movement of her head being a trigger to her seizures. Now when I look back to the pattern - I can't help but think that there is a very real link. With it not being an instant trigger - I had never linked it before.
On Monday 28th Asher kept asking to go outside. So instead of heading out the back to the swing - I took her out onto the deck and I blogged about how much she enjoyed throwing the ball for Zorro that day. We had throwing sessions in the morning, after lunch and then again in the afternoon.
Then on Tuesday 29th, while she was having an early lunch, she had a vacant seizure while I was out with the children at a home schooling writing group (our first time to attend). Thankfully she didn't stop breathing with this one but after she had slept we headed home. She kept wanting to go outside to the swing and the slide!
So when I think about all the throwing ball that Asher did the day before - I think about how much her head went up and down ever time she bent over to pick the ball up. For now we will try and eliminate these major head moving events as a possible trigger to her seizures and see how things go. At least she can still throw the ball for the dog - I will just make sure I pick the ball up for her each time.
So keeping Asher from these activities is not fun for her or I. I know how frustrated we both were on Tuesday when she just kept wanting to go to the swing and slide. At this stage however, getting the seizures to stop is far more important. Often children who have epilepsy from very young do outgrow it. So we can only take things one day and one week at a time and continue to do the best we can for her.