Mountain Climbing

This is not an epilepsy blog. This will not be an epilepsy blog. This blog will continue to be what it has always been: a puking blog.

But...

The seizures keep coming.

On the day her doctor said Kathryn had epilepsy, I could easily have kissed her full on the mouth. I had heard of epilepsy; I knew what it was. It was so much less scary than what I thought we were facing. And her doctor was super hot.

At that point, Kathryn had had two seizures. The first one came and went in the middle of the night. By the morning, it was easy to dismiss. The next one landed her in the hospital for three days. But still, two seizures in two years? Piece of cake. Throw in a daily dose of anti-seizure medicine for good measure, and I was sure we would be in for smooth sailing.

The seizures keep coming.

There were more last night, even after we increased her medicine. Two in a row. And longer. So we increased her medicine again this morning. And now I am scared. I am scared that what we have seen in the past were the foothills, little seizure bumps in the landscape, hills that we crossed easily before finding ourselves climbing Mt. Epilepsy. And thinking about Mt. Epilepsy scares me to the pit of my stomach.

And it makes me want to puke. (See? A puking blog!)

Comments

[Kim]

I stumbled onto your blog today from Woman with a Hatchet. I was wondering if you had read Stephanie at Adventures in Babywearing's story about her son Noah's sezuires. It might be worth trying out.

[The Mom]

I thought this was a poo blog.

[sara]

No, not an epilepsy blog. A parenting blog. An every day life blog. And as much as we wish this weren't true-- sucky things happen in every day life (as do wonderful, joyous things too).

Thank you for sharing this with us. We are thinking of Kathryn, you, the Mom & little sisters. Our family is sending good thoughts/wishes out into cyberspace with hopes your family receives them.

[pallaksch2]

I've been reading the blog since my wife & I found out we were expecting twins, 3+ months ago. Reading the blog was really calming for me during the scary, early days of the twin pregnancy -- it helped me visualize the happy day when I, too, would have two infants covered in crap!

From where you stand now, there's no way to tell whether it's a big mountain or a little one you're on, but like the bear in the song, you'll make it to the other side. Hang in there.

[LauraC]

I always feel lame commenting here because even the commenters are witty on your blog. No attempt at humor - just wanted to say I'm really sorry and can't imagine what you are going through.

[Carolyn]

I can't even imagine what you and your wife are feeling. your little girl is in my thoughts and prayers--I hope they get this thing under control as soon as possible.

It'll be good to read about puking again. :) I know you're looking forward to writing about it.

peace

[Tamara]

That just sucks. It is just... Really Hard to be a parent of a child who is sick/suffers from any kind of serious disorder.
-Tamara

[Renata]

With three daughters, I imagine you guys never thought you'd LOOK FORWARD to the teen years. (Not saying wishing away time is good w.r.t. kiddos, just that it's something to look forward to, Kathryn's outgrowing this...)

And I'm with the Godfather's comment here. :)

[Colleen]

we're keeping our fingers crossed for you...this kind of news of more seizures despite higher doses of meds makes me anxious and nervous and twitchy...can't imagine how you and The Mom must be feeling. Hope you're able to get the appro dosage right away.

[Heidi #2 but whose counting...]

Oh no. I hope things get puzzled out. I know what an odd place you are in as well. We spent the entire winter thinking my daughter had a brain tumor. She was clueless of course, and an endlessly good sport during the rounds of doctor appts, which only made the whole experience all the more surreal for her parents. The kids are much better at handling this than we are. We were lucky and our girl is fine now. I know "Sparky" will be too. Sending you good thoughts...

[Anita]

Never thought I would hear myself say I prefer puking to, er... anything.

[Taado]

It seems Katheryn has finally found something even scarier than triplets. Woe is you.

[Danielle-lee]

I'm so sorry. I pray that these seizures are the mountains, and you will go back to the tiny, occasionally foothills.

[Brian]

Thank you one and all for your concern and wishes of hope. It's important to note that nothing has changed in Kathryn's diagnosis, which is promising. I am sure my fear is an over-reaction to what will soon go away. Kathryn is certainly not bothered by any of this, and showed us the morning after her latest seizures that she could do twenty-one push-ups before breakfast. That's twenty-one "unmodified" push-ups, she wants you to know.

[Stewbie]

Delurking again (i think it's an annual thing) to say i'm thinking about K and your family--hoping that the right balance of meds is figured out soon. Sweet pea--i want to hug her.

[Mia]

Wish I could do 21 unmodified push-ups ...

Hugs to your family, and sounds like Kathryn is taking it in stride.

And overreacting ... I don't know how one *couldn't* overreact in such a situation.

I'll be reading, looking for more vomit in the near future.

[bulhaa]

*hugs*

[koo]

sincere best wishes from the uk to you all.

[Shawn]

Your strength is so inspiring. Keep writing it out ... letting it go. Life is crazy. Soon, this will return to being The Puking Blog. Won't that be so much easier? I just wanted to actually comment to let you know that my family is thinking about yours and sending as many good vibes as we can muster. May peace come along to you soon ... very soon.

[loren]

If you ever get all the way down to this comment...

My nephew started having seizures at less than a week old, and they progressed to the point where they were 30 seconds apart all day long. Then suddenly two weeks later, they stopped. He's 3 years old and hasn't had one since, and he's not on medication. The doctors told us that you never know with epileptic (unexplained) seizures - it could be bad for a short while and suddenly stop, which is what I'm hoping for Kathryn (minus the "bad" part!)

[Dr.Cason]

My heart goes out you.

As a pediatrician I have seen and performed very scary things. I have always wondered how the parents held it together. I wondered what I would feel like if it were my child.

I don't have to wonder anymore. In 5 months my two year old has had 4 severe asthma attacks. The last two were within the past two weeks and were so sudden and severe that we think it may be anaphylaxis.

I'm walking around in a fog. I'm training the daycare in epi-pens and praying he's safe without me.

I look at my patients so differently now. I am one of them and I feel their pain and sorrow.

I wish your child health and happiness.

[Michell]

Shit. I'm so sorry. I can't even begin to imagine how frightening and horrifying it is to see your child go through this. I hope that you are soon able to get the med mixture right enough to avoid most if not all of this.

[PG]

Man this blows. Hope they get things sorted asap. Hang in there guys!

[dmom]

I have been reading your blog for a long time and I'm sorry about your struggles.

I have epilepsy and have since I was eighteen. (My first seizure was after a date with my very first "I love him" boyfriend after we watched twister...I peed my pants...he took me to the hospital..I was very embarrased, so at least your daughter won't have to suffer that) If you don't mind though, and please keep in mind that I'm telling you this in the spitit of offering some hope and that I fully realize that I don't know your daughters exact medical condition. Anyway....
More often than not, when children get/develop epilepsy, they grow out of it. This could be something she deals with for the next ten years that she'll not have to deal with for ever. Also speaking as someone who'se had a grand mal seizure more than once, it's ridiculously frightening for the people who see it and other than the exteme exhaustion that follows and a badly bitten tounge it's not that bad for the person who has the seizure. If that helps you at all. Your doctor probably told you that but I thought it might help comming from an actual epileptic. Also, if her seizures are bad enough there is a very successful brain surgery available that "cures" the epilepsy, they just cut out that part of your brain, you relearn how to tie your shoes and voila...normal. (Again my intention is to offer hope perhaps with a bit of humour NOT trivialization...please take it that way)
There are some great sites for information one of the best is www.epilepsy.ca
Take care, you'll get through this and manage it and be fine...promise.

[blue milk]

I couldn't face writing about epilepsy and the ongoing battle we faced with it. I'm very glad you can, because it sounds so simple to manage and just as you've found also, it just isn't always.