Vancouver and back

12 Oct

Since my last post, I have been to Vancouver and back again.  The trip was quite a whirlwind.  We found out about two weeks ago that the epileptologist at BC Kids (a pediatric neurologist who specializes in epilepsy) would be able to squeeze us in for a visit this past Friday.  She wanted both Michael and me to be there, since we were going to discuss the possibility of doing the ketogenic diet.  In some ways, it was meant as an orientation for us, and in some ways it was an opportunity for her to assess whether we’d be a good fit for the dramatic lifestyle change that goes along with the diet.

Yukon Health usually will pay for just one parent to travel with a child as a “companion” for medical appointments Outside (i.e. anywhere not in the Yukon).  However, they will cover the cost of both parents travelling if it is deemed medically necessary.  I was on pins and needles waiting to find out whether they would agree that it was medically necessary for us both to be there, and thank goodness they did.

The three of us left on Thursday morning, and so theoretically had a whole day of “free time” in Vancouver.  But we’d been up since about 5 a.m. because Jade had had a series of seizures that required emergency medication.  This was the fourth morning in a row that we had to use her rescue meds, so we were physically and emotionally spent by the time we arrived in Vancouver, got to our lodgings, and had lunch.  It was definitely time for a nap.  We did get to see my sister for supper that night, which was wonderful; the last time I’d seen her was at her wedding in Mexico last year.

Jade’s new neurologist, Dr. Huh, is great.  I arrived at the appointment clutching a notebook filled with little coloured tabs; I had a tonne of questions and I didn’t want to forget any of them.  The doctor chuckled when she saw the notebook and she said she knew she liked us already.  We spent a bit of time talking about the history of Jade’s case and then she spent a bit of time examining her.

I’ve never gotten to see Jade at her previous neurology appointments, so it was fun watching Dr. Huh interacting with Jade, seeing how she used different kinds of toys for her tests.  We already knew that Jade is right-handed, but didn’t realize just how strong her preference is until we watched the doctor doing some of her tests.  When it came to testing for reflexes, she took out her little hammer-thing (wonder what it’s officially called?) and told Jade, “This is my booper!”  Every time she’d hit a spot on Jade’s body, she’d say, “Boop!”  Jade was fascinated, and I was highly amused.  When she looked into Jade’s ears, she said she was looking for puppies in there; tell me you’d keep a straight face at that line.

Jade had a number of seizures while we in Dr. Huh’s office; in fact, Dr. Huh observed more seizures than we did, which was both surprising and a little distressing, given that we think we’ve gotten pretty good at watching for them.  She also observed a slight tremor in Jade’s hands and a slight lack of balance, probably from fatigue and the number of seizures she was having.  (She’d had another series of early-morning seizures, although this time they hadn’t required the rescue meds.  But they really tired her out.)

Based on the last EEG, our recent observations of Jade’s seizures, and her examination that morning, Dr. Huh concluded that Jade’s anti-seizure medications really aren’t working.  Since Jade has now failed three medications (Clobazam, Valproic Acid, and Clonazapam) there’s a less than 10% chance that any other anti-seizure medication will work.  The longer the seizures go uncontrolled, the worse it looks for Jade’s development.  We’ve already had confirmation that she is slightly speech-delayed (though we believe that started even before the seizures; the more seizures she has, the harder it becomes for her to catch up.  Given her age, her type of epilepsy (Myoclonic Astatic Epilepsy, we were told for the first time), and the fact that we’re pretty proactive and organized parents, it seems Jade is an excellent candidate for the ketogenic diet.  We were told that Jade’s type of case is one they want to treat aggressively because right now she functions at a good cognitive level, so she really has something to lose.

BC Kids has a special kitchen for training parents who have a child starting the ketogenic diet.  Besides the doctor, a nutritionist and a nurse are dedicated to the program.  It is such an intensive use of resources, they can only start two kids on the diet every month.  I am really grateful that they told us they can probably fit her in toward at the end of November.  I expect that Nugget will have arrived by then, and although it means I’ll miss a week of my mom’s visit (boo!) as far as we’re all concerned, the sooner Jade can start the diet, the better.

In the meantime, despite the low probability of success, Jade is starting a new drug called Keppra.  This is the anti-seizure drug they usually try first at most US hospitals; we’ll see if it does anything for Jade.  I expect we’ll see at least a short-term improvement; maybe that will tide us over until we can get her started on the diet.

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9 Responses to “Vancouver and back”

  1. Mr Lady October 12, 2008 at 10:23 pm #

    Can you email me so I can send you my phone number so the next time you’re here I CAN HANG OUT WITH YOU? 🙂

  2. Jenny October 13, 2008 at 3:52 am #

    Well, welcome to a crumby club! Myoclinic Astatic seizures are what Naomi has. She tried Keppra 1st and it has very little side effects and it’s possible it’ll work for Jade. It didn’t stop Naomi’s seizures, but it clustered them, so she has them almost only when first waking. About the tremors Jade is having, Naomi had the same thing as a side effect of the Valproic Acid. We start the Ketogenic diet in 2 weeks and our epileptologist says she’d give it a 50% chance with this type of seizure! Which is 40% better than any other med. DO NOT search for the myoclonic astatic seizures online, seriously! It’ll worry you like crazy! I about drove myself nuts! There’s stuff that’ll come up that will worry you that will never happen! Our Dr. said it’s just myoclonic (meaning muscular) and astatic (meaning they drop), it’s not Doose syndrome, it’s not Lennox-Gastaut! They’d have known if that was the case.

  3. Marian October 13, 2008 at 7:10 am #

    Keppra is the drug of choice for Granny……she had reactions to just about everything else, including the generic Keppra. She can only tolerate the “real thing”.

    It will be interesting to see how Jade reacts to it. Hopefully it will control the seizures somewhat until you start the diet.

    Good luck with everything. As always, you’re in our thoughts!

    Sending lots of love and hugs.

  4. Kara October 13, 2008 at 7:27 am #

    You must all be so exhausted mentally and physically. You are such a strong family!

  5. allmycke October 13, 2008 at 8:38 am #

    I’m full of admiration for the two of you. You’ve certainly had more on your plate than most people experience in half a lifetime.

  6. Mamasphere October 14, 2008 at 2:13 pm #

    What a blessing to have such a wonderful doctor. Keeping my fingers crossed that the new med gives Jade some relief, and that you can get in in Nov for the diet training. So glad she’s considered a good candidate for that!

  7. Jamie October 14, 2008 at 2:21 pm #

    Jade is so lucky to have such devoted, organized, determned parents. Derek is the same age as Jade and I hate to think of someone so small going through these challenges. Keep on keeping on.

    Jamie

  8. Captain Momma October 14, 2008 at 3:28 pm #

    Goodness sakes 😦 I am sorry to hear the drugs aren’t working. I am grateful to hear we have such an amazing children’s hospital here in BC. A whole kitchen dedicated to helping you with the diet? Who would have heard of such a thing? That’s awesome that they can give you so much time and not just some more reading to do and “Uh, here, figure it out.”

    You guys are doing so great with everything on your plate right now, I’ll pray for your strength to keep up and for a quick and easy arrival of Nugget!

    Take care,

    Kelli

  9. Barbara October 14, 2008 at 6:15 pm #

    Fancy Latin medical term – reflex hammer.

    What an encouraging visit with the specialist ~ all your work on the KD and it will soon be a supported reality. I am very happy for you. Also nice to read about a physician with good patient skills – but I think that is not rare, just not always. Also good that she is not showing severe effects from the seizures so far. Also good that another med is being tried.

    Now I’ll be checking in to read about Nugget’s arrival! Sending good thoughts!

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