Wednesday, April 25, 2007

A Petition

Today, for the first time in a LONG time, I went to yoga. Much, much needed yoga. I do a kind of yoga called Kundalini at a center called Golden Bridge. It's kinda THE place in L.A. to do Kundalini Yoga. And today, to make the experience complete, I took an all women's class from Kundalini guru Gurmukh. She travels the world to teach Kundalini. She has a DVD. She's 60+ and looks FANTASTIC.

Anyhow, Kundalini is a very spiritual kind of yoga. You often chant. It's very much about cleansing yourself. And there's always a goal for that particular session. To set up the goal for today, Gurmukh informed us that, at the end, she would be reading to us from the book, "Eat, Pray, Love: One Woman's Search for Everything Across Italy, India, and Indonesia".

So we did our session. I was exhausted and knew that I would be sore tomorrow. Gurmukh then read the excerpt as we sat in easy pose with our eyes closed. In the story, the writer was waiting for her husband to sign their divorce papers. She had waited and waited, called her lawyer continuously, only to hear that her husband still refused. As she drove with her friend, she expressed her frustration with this situation. Her friend asked her if she'd prayed for this to be resolved. The woman admitted that she never used prayer to ask for something. She just used it to ask that she have the strength to deal with whatever came her way. Her friend told her this was stupid. Since we are all part of the universe, we can ask the universe for help in any given situation.

Now, as I was listening to this, I thought of myself and prayer. I don't really pray. But my reason is different. I have problems asking God for something when I'm not really sure on God to begin with. I have issues believing that there is a God that would have a world where my child (and MANY other children I now know) have to struggle and suffer beyond reason. So I feel like a hypocrite asking God for help when I'm not a big believer. But, with the reasoning that you're not praying to God for help but praying to the universe for help, (as it said in the book) well that's different. I'm part of the universe. I don't have issues believing in the universe. I know it exists.

So in the story, the woman opened her notebook and wrote a petition to the universe asking for her divorce to be settled so that she could move on with her life. She signed the petition. Her friend, who was driving, said that while she couldn't actually sign it, but that she would mentally sign it. The friend then asked the woman who else she knew who would sign this petition. The woman listed family, friends, people who'd passed away, famous people she'd never met who she thought would be in support of her emotional pain finally ending. With each name she said, her friend affirmed that that person had signed. Once all the "signatures" were obtained, they sent the petition off to the universe. Then, as one might predict, the women got a call from her lawyer. Her husband signed the divorce papers. The universe had answered.

Next, as part of our yoga, we were all supposed to think of our petition to the universe. My petition was, of course, for Soren. It went something like this...

Dear Universe,

Please heal my son Soren. He is severely disabled due to Epilepsy. We have tried everything: drugs, diet, therapy, and alternative medicine. He's the sweetest, most beautiful boy imaginable, and all I want is to see him grow to be a typical boy.

When I thought of who would sign this, tears began streaming down my face, because it's all of you. All of you who read this blog, people who don't read this blog, people who write to me about Soren, have taught Soren, suffered through therapy with Soren, dreamed of Soren, read to Soren, done art with Soren, or had even one thought of Soren. In fact, I don't know anyone who wouldn't sign my petition to the universe for Soren.

So I thank you all for your signatures. And I will now pray, every day, that the universe says, "Yes!"


Sunday, April 22, 2007

Hard Working Boy

As I write, Soren is on his belly and not happy about it. However, he got himself there and now he's got to work it out.

It's interesting to me how he works on different stuff depending on his environment. When he's in his Vision Box, he looks at the lights and kicks. Now and again he'll go from side to side, but doesn't go his his belly.

When I'm writing "downstairs" (down the 2 stairs in our house), I put him on blankets where he can kick. That's what he was doing this morning. And when he's down here, he gets to his belly. The trouble is, once he's there, instead of pulling his arms and legs under his body to get in yoga Baby Pose, sprawls himself out flat with his legs and arms extended. You can't get anywhere from this position.

But Soren is strong enough that he can lift his head, upper body, and legs off the floor. So he arches his back, lifting his limbs, in a modified Yoga Bow pose. He moves his head side to side, but then he thumps it on the floor (ouch!). Then he gets more and more mad (who wouldn't?). The hard part is watching him suffer through this. However, as with any exercise, it makes you stronger even though it's not necessarily the most fun. If we don't keep him on his belly, he won't have the opportunity to figure out to pull his legs and arms back under to push himself up.

Of course, he also gets so mad, he gives up and falls asleep. Again, I don't blame him.


Wednesday, April 11, 2007

Gluten Free Casein Free Diet

A week and a half ago I started Soren on the Gluten Free Casein Free Diet. In VERY general terms, this means a wheat and dairy free diet (of course you also have to watch what toothpaste, laundry detergent, and shampoo you use! Yikes!). The reason I decided to try this started with my friend Katherine, whose son is Autistic.

Now Soren does not have a diagnosis of Autism. However 20% of kids with Autism have Epilepsy. So who knows? We've been struggling so much just dealing with the Epilepsy, Autism has been the last thing on our minds.

The GFCF Diet is reportedly very good for kids with Autism. The Gluten can act like a drug in some kids, making them a little high, so to speak. Getting them off it clears their head. And the GFCF diet also helps some people's digestion.

So I checked on the diet's efficacy with Epilepsy. Turns out there are anecdotal reports of the Gluten Free Diet helping with seizures. And after the past 6 weeks, having a horrible few days every 2 weeks, I figured it was worth trying. And I decided to do the Casein Free as well for fun.

Changing Soren's food was easy enough. He eats what I feed him. Yeah, I had to switch the salsa in his guacamole and his Eggo waffle to a GFCF waffle. And I spent way too much time in Whole Foods going through their Gluten-Free Food List and their Dairy-Free Food Lists (they didn't have the cross-referenced of course). Still, not too bad.

Switching his nonfat milk to an Almond drink actually went smoother than expected.

And now I have to provide Soren lunch at school, which is the biggest "hassle" of it all. But really, that's not hard either.

Now we have to wait and see if there's a difference. It takes the body a while to get the Gluten out of the system. But if it works and we cut down those bad seizure days, it is totally worth it.


Wednesday, April 04, 2007

Rough Days

Last week was a tough one. On Saturday, Soren had a seizure on the way to our park play date with his former UCLA teacher Lisa (he always seems to make it rough on her). Then on Sunday he had 3 seizures--2 tonic-clonics and one absence.

But Monday was the doozy. 7 tonic-clonic seizures. After the first 3, I saw how the day was going and gave Soren Diastat, the rectal valium. Now, when all is good, this is supposed to stop the seizures for a good amount of time. Instead, after he woke up from his three-hour drug-induced nap, he had another seizure. And then 3 more following that.

I got the okay to increase Soren's Lamictal again. And even got the okay to give him another round of Diastat (something you are not supposed to do unless desperate because a tolerance to the medicine can build up).

Fortunately we didn't have to do this. I took him to the pediatrician to make sure he didn't have strep throat or an ear infection since Soren doesn't give us the usual signs most kids do. He checked out fine.

And then Tuesday he had seizures, as if the weekend and Monday had never happened. I kept him home with me just in case. Wednesday and Thursday he was very quiet, which is unlike Soren. And then Friday he was back to his chatty, complaining, giggling self.

Our only theory is that he's cutting some of his 2 year molars late, since he was drooling up a storm. So we've been giving him Motrin in the hope that we're cutting doen the pain.

What amazes me is how this all still throws me. I sat home with Soren, giving him oxygen when he seized, giving him the Diastat, trying to feed him. And I through all of it, I was in a daze. As Soren and I hung out, I sat and watched House episodes I had TiVo'ed. Then I watched one again last night with Aaron and I could barely remember watching it before. Little bits seemed familiar, but then other parts seemed totally new.

The fact is, seizures are debilitating. And I'm only having them second-hand. I can't imagine what Soren's going through.