Geocaching Fun

As mentioned in the last post, our fun plans changed from travelling to the U.S., to having fun close to home.  One of our favourite family activities is geocaching.  The kids love using the GPS to do a little treasure hunting.  And yes we live in Canada, so there is still snow everywhere but that doesn't stop us.  It felt so nice to get outdoors, get fresh air, and forget about the "other" trip.  ;)

On our path trying to find a cache.

Yeah, he likes snow a little too much.

Cute baby wanted to get out of the baby carrier and crawl in the snow like everyone else.

Me loving some snow time with cute baby.

We found it!! The cache was full of playing cards, like pokemon or bakugan, to trade.

Searching for the perfect trade.

Pre-Existing Condition Lesson Learned

The last week of March we had big plans to visit with family and friends in the U.S.  We notified everyone we wanted to be sure to visit...my husband's parents, some siblings, dear friends we haven't seen in years, cousins, and most importantly our Japanese daughter, an international student who lived with us for 3 years, who was leaving the country that week.

The boys were thrilled to see Grandma, Grandpa and their cousins, who we really only see maybe 1 or 2 times a year.  We had our bags packed, movies, music, and activities picked out for our long drive down.  We were set to go!

Three hours before departure we received some discouraging news.  My husband's travel insurance, which we previously checked to make sure we had coverage, notified us that they would NOT cover any costs relating to our son's "pre-existing" epilepsy if he had any changes to his drugs in the last 3 weeks.

We had just lowered one of his meds that week!!!!!! In fact, there's almost constant changes to his med schedule!!

Desperately we called several different travel insurance companies, looking for someone who might give us pre-existing condition insurance.  We had NO LUCK!!

The best we could find was a company willing to give us the insurance we were looking for, BUT he could not have had any drug changes in the last 7 days.  Again, we didn't qualify.  :(

The insurance agent also stated another condition that would limit our coverage, "if he has had any symptoms in the last 7 days from his undiagnosed condition".  Well, we know he has Refractory Epilepsy but is undiagnosed as to the cause.  I'm sure that little loophole may prevent us from travelling out of country for quite some time.

I feel a little naive about the whole situation.  I guess we've found our insurance extremely dependable at home, and didn't really ask enough questions for travelling across the border.  I shouldn't have been surprised, but it was still disappointing to call our loved ones and cancel our plans.

What did we do instead???
We did not want to make the scenario any more depressing, so we had some family fun close to home!!  Geocaching, hiking, waterfalls, fire pit picnic, dinosaurs here we come!

Disability Tax Credit

We received some fantastic news today! We've been approved for the Disability Tax Credit.  Which means we can claim credits to help reduce our taxes!

It's so nice when disability benefits work out and help to reduce our stress, even just a little bit.

What a Wonderful Couple of Weeks!!

Our son has officially had his best week in a long time.  It's been just over a week since his last IVIg treatment, and he is doing fantastic.  Only 1 seizure the night of his treatment and nothing since!  We're heading toward a record here: 8 days seizure free and counting.

Another amazing part of this week has been his mental functioning.  What a difference it makes when he doesn't have extra meds in his system and not having to continually recover from seizures.  He is so happy!  He's interacting better that he has in a long time with his little brothers, who absolutely adore him.  They're playing imagination games as much as possible, it's a blast to watch.  One day they pretend to be Transformers, the next day brings on another favorite superhero.  He's been talking about school activities more than usual.  The last few days his class has been participating in Mission Impossible in the gymnasium.  I'm not really sure what it is, but he's excited to tell me about the sharks, bugs and different obstacles they have maneuver around. 

I almost burst into tears of joy when I happened upon a little game he created for he and his brother last night.  Again I don't really know what the game was about, maybe like the Mission Impossible at school, but he had drawn pictures on several pieces of paper of different sizes and lined them up on the floor strategically.  They had the lights out, his little brother had on a toque and sunglasses, and they were getting ready to start playing.  If we hadn't been on our way out to our monthly Epilepsy Parent's Support Meeting, I would have jumped in with them.  I'm going to see if he'll explain it to me tonight!

Last week we also witnessed a major childhood milestone in our son's life: 2 lost teeth.

He's was incredibly excited about 1. pulling the teeth out and 2. $$$$.  He pulled the first tooth out, placed it carefully under the pillow and woke up the next morning to $2.  Same thing happened the next night and he received another $2.  What an easy way to make money!!  He's been excitedly telling everyone we meet about his lost teeth and new found venture.  One of his top front teeth is loose now and he can't wait to yank it out!

After loosing Tooth #1:

Day to Day Life with Epilepsy

If I could use one word that describes what everyday life is like with a child who has epilepsy, it would be UNPREDICTABLE.

I think that would be the answer for any mom, of any circumstance, in that the only thing you can really count on is the unexpected.

Let's take yesterday for example, our son woke up with an amazing energy.  He dressed himself, ate his breakfast happily, played with his little brother kindly and with words, not fists, when there was conflict, he was joking, laughing, and being his goofy self.  I loves days like that, they don't appear too often and everyone is happy and laughing along with him.

He was able to go to school and when I picked him up at the end of the day I was expecting to see him in the same mood.  Instead, I was greeted as always by his aide but along side her was his classroom teacher, which made me a little nervous.  Then I looked at my son.  He was walking with assistance and very pale.  They explained to me that he had just vomited all over his desk, and clearly wasn't feeling well.  I felt awful for him, not the best way to end a day at school.

Well he climbed in our van, we drove across town to pick up his little brother from play school, and then headed straight home.  By the time we got home, he was better.  In fact, he had a quick snack and was ready to pick up where he left off playing with his brother that morning.  I had to check on him a few times to make sure he was ok, but it was as though nothing happened.  The only mention of it was when his dad came home later and he said, "Dad, at school I barfed all over my desk but it's done now".  Well, I guess that's that.

The evening was going pretty smooth until he had an "unexpected" seizure.  It seems to happen like this often where our son is having a fabulous day and WHAM, he hits the floor.  He had left his helmet in his bedroom and didn't have it on when he fell, so the fall resulted in a goose egg on the side of his head and a bleeding nose.  Poor guy slept for the next couple of hours, took his medication, then went back to bed for the rest of the night.

I'd love to say the seizures ended there, but that's rarely the case.  The next day he had a long one lasting over 5 minutes and I had to give him midazolam.  Actually, he had 2 seizures that were much too long and required rescue meds, one in the morning and another in the evening.  Days like that he stays home from school and we all just spend time together.

It would be a fairly safe assumption that these seizure days are hard on the family.  They are difficult.  However, we've been very fortunate to have more good days than bad lately.  Days where I'm playing referee to all of our children, where we can participate in activities as a family, and days where we feel incredibly blessed to have 3 amazing little boys.

IVIg Treatment

We took our son to the hospital this week for his monthly IVIg treatment. Since I'm not really an expert, I'll use Wikipedia's description of what that actually is:


Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG(immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:

  Immune deficiencies 

  Inflammartory and autoimmune diseases

  Acute infections.

The Neurologist's theory is that our son possibly has an autoimmune condition.  There has been no definitive confirmation but since our son's medications haven't been enough to keep away any breakthrough seizures, trying the treatment is worth a shot.  It takes 6 months to see if it's helping or not, and he just had his 4th treatment.  So, we're still in the trial phase.

He is surprisingly very calm at these hospital visits.  We take him to the hospital first thing in the morning and are there until mid afternoon.  He's only 7 but seems tougher than the teenagers.  A lot of patients require freezing before the IV is attempted and we've heard the odd cursing at the pain, but not our little guy.  He just breathes right through it, even through the 3-4 attempts it takes to find a good vein.  His strength amazes me.  


On the plus side, he gets to order almost anything he wants for lunch, watches TV, plays Xbox and sometimes gets to play in an attached playroom.  In fact, I think he enjoys being at the hospital all day with so many fun things at his disposal.  It's reassuring too that when the treatment is finished for the day we get to go home.  :)

Valproic Acid Side Effects

As I've mentioned in previous posts, our son has undergone a severe cognitive decline in the last year.  The whole situation has been quite puzzling to everyone involved, our family and the health care professionals. Our son was just not displaying side effects in a typical way.  It was difficult to pin point what was causing his troubles.  Was it as a result of the seizures, the medication, the two combined, or an underlying condition?  We're still not sure what the answer is.  However, during one of our IVIg (intravenous treatment) visits at the Children's Hospital in November, our Neurologist came to us with an interesting theory.

Our Neurologist and Neuropsychologist had just attended a medical conference where a colleague shared his patient's experiences with Valproic Acid.  This doctor had 3-4 cases where he found a direct link between the use of Valproic Acid and Dementia.  Dementia being a serious loss of cognitive ability in a previously unimpaired person.  The Neurologist & Neuropsychologist immediately thought of our son, who was taking 18mL (900mg) of Valproic acid per day.  In fact, he has been on Valproic Acid for half his life.

With these new confirmed cases in mind, our Neurologist thought it would be best to start weaning our son off the Valproic Acid.  The possibility of the medication causing severe difficulties was pretty alarming since he had been taking it for so long, and so much of it.  Regardless, we were very happy to reduce the medication.  We felt that our son was possibly being over medicated anyway because he really seemed to be in a drug induced stupor all the time.

On the higher doses, our son was extremely tired all day.  He would sleep in so long that I would need to eventually wake him. He'd take long naps and go to bed very early.  Sometimes he would even need to sleep at school because he was so tired.  He had a lot of difficulty getting ready in the morning.  On a typical morning, he would require assistance using the toilet, bathing, and dressing. Each meal was spent coaxing or forcing him to eat, which would sometimes get vomited in resistance.  Reading a book would take an hour, when it used to take maybe 5-10 min.  I could go on, but he basically would need to be carefully walked through each step of his day.  He was also having several absence seizures throughout the day, which wasn't helping his already tired body.

After a month of reducing the Valproic Acid, we've seen a significant improvement.  I wouldn't say he's back to "normal", but we're starting to see more good days than bad.  Maybe 4 days out of 7 he's waking on his own, dressing himself, eating, talking more to us without phasing in and out of seizures, interacting more with kids at school, and his reading isn't as laboured.  There's still a lot of issues we're dealing with in regards to all of these things, but we're just ecstatic that there's any progress at all.

It made me wonder how much influence it had on him when he was 4 or 5 years old.  How much of his development had been impaired because of this drug?  I don't think we'll ever know the answer, and there's probably no point dwelling on it either.