Off to the Hospital!

Soren is getting admitted to the UCLA today for testing: an EEG/telemetry (video), MRI, and PET scan. He will be in for at least 3 days, depending "on my child's performance" (i.e. amount of seizure activity).

So for the first time, I would like everyone to send out thoughts for Soren to seize in these next 3 days so that this activity can be recorded on the EEG/telemetry. I will be in the hospital, day and night, for the duration of Soren's stay because I am the camera operator, making sure any seizures are captured on film.

They are so serious about a parent staying that I'm actually only allowed to leave to shower or to get food from the cafeteria that I must then bring back up to the room to eat. Instead I'm just bringing a big cooler full of my food and Soren's food.

I probably won't be able to post an update on the progress until we get home. But I plan to take pictures so everyone can see what the whole process is like.

Thanks for the good thoughts!

Amy

Give 'im the Reboot

Soren's Monday continued to go bad, so after his 3rd tonic-clonic seizure, I gave him Diastat to stop the madess. This seriously acts like a reboot to his system (thank goodness). And that's how I imagine his brain. Like a computer, it freezes, not being able to process all the information. You hope that the computer will fix itself, but when it doesn't, you have to shut it down.

And it worked. The rest of the week he was GREAT. He went to school, he laughed like a goofball, he's been very happy. And now we are off to Enumclaw to visit Aaron's family. Hopefully his good mood will last so everyone can see what a delight he is!

Amy

Seizures, A Week Early

Soren will be going in for testing at UCLA next Monday. During this time, we're actually going to want him to have seizures so we can see what's going on in the inside of his brain and on the outside of his body. Since Soren's had relatively good seizure control, I didn't know how we were going to induce the seizures.

Well, Soren decided to start a week early, having 2 seizures yesterday and 1 (so far) today. The first yesterday was done when he was with his respite worker, poor woman. The rest were with us. I've kept him home from school and am hoping today isn't a bad day.

I also hope that he actually repeats this performance next week. These seizures are quite awful and I really want them recorded by the EEG and video camera.

Amy

Not Much to Say

Sorry I haven't written in a bit. Honestly, I don't have much news at the moment, which is a good thing. Soren's been well. He's in summer school now and seems quite happy to be back on schedule. Still no seizures since the dehydration days of our trip.

I guess I have a couple little notes of interest. He does seem more snuggly than usual, which is nice. Granted, I have to heft him onto my body to see if he wants a snuggle. But at least he's been enjoying it, so it's worth the heft.

Soren and I were in the kitchen getting his breakfasts ready while Aaron was getting his shoes on. Soren heard the distinctive thud of Aaron's shoe on the wood floors and smiled. He knows the sound and who it belongs to. I've seen him smile at his father's step before.

When I went into Soren's room today to get him up, he turned his head and looked towards the door when I opened it. He didn't always do this.

And when I'm asking him where Moira is and where I am, he seems to be making a real effort to turn and look our directions, even if he doesn't get it spot on.

That's it. We're on the "no news is good news" kick right now. Hope if there's any news, it will be good.

Amy

DR Trip 2nd Leg: Smoother Waters

Yes, I am happy to say that the rest of our trip went MUCH smoother. With Soren hydrated again, he only had 2 more rather uneventful seizures (tonic stiffening for only about 10 seconds without the horrible clonic jerking). We returned to Atlanta and were given a terrific tour of one of the Turner buildings (with Cartoon Network on one of the floors). Moira was thrilled with all the goodies she got. And I even got to have an evening out with some CN friends while Aaron took care of the kids!

Then on to Miami, where Aaron's folks joined us, and to the DR! I actually made it through without food poisoning and got to play in the pool AND the sea! Soren had a great time in both as well with his special flotation device. They even had this small wading pool that Soren could stand in (something he usually hates doing but for some reason, in water, he chose to do it!).

Soren's treatment Friday went well. The only problem is that with these injections, Soren keeps getting stronger and stronger! When we first went back in 2005, Soren was so weak and having so many seizures, he would just lie there and not put up a fight when the IV was put in. Now he squirms, rolls to his side, gripes, and raises a fuss--just as any typical 3 year old would when being stuck by needles! I'm happy to have this problem, but it made the doctor and nurse's job much harder. Nurse Daisy was brilliant and got the IV in on the first try and then held his hand still to made sure Soren didn't mess it up. Doctor Maria was also great getting the injections into Soren's thighs when all he wanted to do was kick! Dr. Rader and his team really took the time to make sure everything went smoothly, which we really appreciate.

We made it back to our hotel in time for lunch and got in some more pool time. Then we had Saturday to relax before turning back around to Miami on Sunday and LA on Monday.

Soren's Almond Breeze made it through the trip without leaking all over the luggage. However, security in the DR did find these containers of liquid suspicious and pulled my father-in-law into a back room to explain what it was. Don't worry, he and the milk made it out without incident.

Amy

DR Trip 1st Leg: Rough Start

Since Soren started the GFCF diet, we switched him from cow's milk to Almond Breeze, an almond milk which he LOVES (lucky). However, we figured we couldn't go lugging gallons of the drink across the country. So in preparation for our trip I tracked down a powder potato milk that can be mixed with water.

I wisely tested him on the potato milk and while it wasn't a favorite like the almond, he tolerated it just fine. My sister then helped me do the math so I knew how much of this powder I would need to pack to make up 27 oz/day. I triple bagged it and, though I feared I would get busted for smuggling a mysterious white powder into a foreign country, I figured when they realized it tasted like cake mix, they would set me free.

So we set off from LAX to Atlanta on Friday. Before we left home, I got a bottle of the almond drink into Soren, just to be safe. On the plane I mixed up the potato milk, but then failed miserably to get it in Soren. I figured it was just the plane travel. We stopped in Atlanta and made it to our hotel, where we were spending the night. I figured Soren would be desperate for liquid by this point between the plane ride and the lack of drink since 6 that morning. But no. He just dribbled it out. I tried again at dinner to no avail. He was having none of it.

Now, the reason we stayed over night was that we were driving to Chatanooga, TN the next day to visit Aaron's longtime friend Chris and his family. He and his wife Marcie had kindly picked up some of Almond Breeze for our visit. I was hoping Soren could hold through then if he was still a pill in the morning about the potato stuff.

But at 4 am that morning in my sleep I thought I heard something. I got up and Soren appeared to be asleep, but his heart was racing. I figured I had just missed the end of a seizure. This was confirmed at 8 am when he woke with a seizure. He then had another one at 8:40, 9:40, 10:40, and 11:40. Hard, horrible, tonic-clonics. When we saw how things were going, Aaron ran out to a market and bought them out of Almond Breeze. Then the challenge was to rehydrate him between seizures. And even though he was kind of out of it (understandably), he sucked that stuff down like it was liquid gold. After his 11:40 seizure, we gave him Diastat to "reset" his brain.

And I am happy to say that all this worked. Soren is back to being his happy, kicking self. We made it to Chatanooga, though we did start much later than planned and he did have 2 of the seizures on the road. Yesterday was tense, but today has been lovely.

Just goes to show how travel and messing with the routine can really mess up this little guy. The seizures can come out so quickly just with dehydration and stress. But we forge on!

Now we just have a buy another suitcase so we can get all this Almond Breeze to the DR!

Amy

Back to the DDDR

Don't know how lucky we are, boy.

We start our trip to the DR on Friday. One of Aaron's generous business associates donated his Delta miles to us so we could travel to Miami. Delta stops in Atlanta, so we are taking advantage of the stop and visiting some friends in Chatanooga, TN and getting a tour of Cartoon Network.

After that, we continue on to Miami, where we will meet up with Aaron's folks. And then on to the DR!!!!!

We are very excited about this trip. Soren has not had a seizure for a month (knock wood)! We really think the GFCF diet is to thank for this. Hopefully the stress from travel won't bring on any seizures. AND hopefully we will see some fantastic results from this next treatment!

On another note, Soren is doing quite well. He had an awards ceremony at his school yesterday. Every child in his class got an award for their particular accomplishment. Soren's was for "Independent Sitting." He can now sit for up to 40 minutes against a wall with only that as support!

All the other kids got similar, impressive awards. It was a cool ceremony for amazing kids.

And that leads me to yet ANOTHER note. I got an email from another "special needs" mom yesterday. Her son has Down's and Soren was in class at UCLA with this boy. The email was about an amazing young man named Soeren Palumbo (yes, same name, different spelling). You may have heard of Soeren already. If not, let me tell you about him.

Soeren now a recent high school graduate. 4.0 GPA, 1st in his class, a National Merit Scholar, and will be attending Notre Dame. In February he gave an amazing speech to his high school class about people's casual and cruel use of the word "Retard." The video is not the best, but you can listen to his speech on YouTube.

Soeren's Speech

His point was that, in this age of political correctness, why is it still acceptable to use the word Retard? And not just to use it in random conversation as a replacement for other words like "stupid" or "dumb." But to specifically target it against the mentally handicapped. Soeren's sister Olivia is mentally challenged, so the use of this word offends him greatly. He didn't understand why people, whose brains are working "normally" would attack people who, because of their "deficiencies" will never hate. Why would people with, theoretically, more brain power want to harm someone with less brain power--someone who would never try to harm them? Soeren's speech struck such a cord, he did an edited verson for Senate and had news reports done on him.

Now I'll admit right now that I have been guilty of using this word. I've said, "That's totally retarded," without thinking twice about the people it's actually aimed at insulting. Interesting because I learned back in junior high not to say, "That's so gay." I don't say that because "gay" in that context would mean "stupid" and I have plenty of gay friends and none of them are stupid.

Yet, even after I had Soren and knew his diagnosis, I STILL said, "That's so retarded." Now it wasn't in reference to a person who had challenges, so I rationalized that it was okay (knowing full-well that it wasn't). I thought since I was just using it as an adjective, I was in the clear. Plus, I was a feeling defiant. I didn't want this word taken away just because of my child's disability. Finally, I got it through my own thick head that this just wasn't a good word, no matter how I used it.

Part of that was realizing how much others used it. People really use it rather nonchalantly. Like me, I have friends who still say this. What's sad is that I haven't had the guts to tell them that it hurts my feelings. I know it's because when they say it they, like me, don't REALLY mean to insult the mentally challenged. They don't mean to insult Soren. They just use it as a word. But the other Soeren's other point was, would you say other offensive and hurtful words as easily? Would you say, "Faggot"? Would you say, "Nigger"?

So why say, "Retard"?

Sure, it's just a synonym for stupid and dumb. The difference is, "Stupids" and "Dummies" aren't derogatory terms for a certain group in our society.

And Soren and his schoolmates aren't Retards. The children I saw yesterday all have their challenges. But each of them is making strides every day towards independence and they all deserved these amazing rewards.

So, thank you Soeren for speaking out for my Soren.

Amy

Greg Grunberg: My Hero

Greg Grunberg, from the show Heroes and Alias, has a son who also has Epilepsy. I actually met Greg at a fundraiser for UCLA's Children's Hospital

Pediatric Epilepsy Project

He was very kind and our sons actually have, not only Epilepsy in common, but the drug to help control their Epilepsy: Lamictal.

Greg has made Epilepsy his cause, speaking out and raising awareness. I recently discovered this video he did for

The Epilepsy Foundation

Here he talks about what to do when someone has a seizure. I've learned through all this that Epilepsy is a disease that people don't talk about and often misunderstand. It's good that Greg and other parents are helping get Epilepsy out of the closet.

Amy

Another Worthy Cause

My friend Cindy, in conjunction with Cartoon Network, is doing an art auction at Cartoon Network for the Family Service Agency of Burbank on Saturday, June 30. The silent auction bidding goes from 6:00 to 7:30.

A similar auction was held a little over a year ago for Soren's friend Fyn, who was diagnosed with a rare pediatric liver cancer. Artists from all over donated their work for the auction and over $40,000 was raised to help Fyn's family with the financial burden. Being the amazing people that they are, they then gave Soren $10,000 of that money to help with his stem cell injections!

The Family Service Agency is another VERY WORTHY cause and I'm sure more AMAZING ART will be donated. If you have art to donate, PLEASE DO! If you are are in the area on the 30th and interested in getting some great art and giving to a great cause, Please Do!

Amy

Ahead with Horses Needs Your Help!

As I've written before, Soren has Hippotherapy at Ahead with Horses every Friday. No, Soren does not ride a hippo as the name implies. The Greek word for horse is hippo. So this is Horse Therapy (though I would love to see Soren riding a hippo).

It's quite amazing to see Soren up on the horse. Riding really has helped his neck and trunk strength, challenging him in a very different way than his other therapies.

This Sunday, June 10th is Ahead with Horses 26th Annual Fun Day! This is their BIG fundraiser and this year, they REALLY need the funds because their state funding was revoked.
Here is the link to

AHEAD WITH HORSES

On the sidebar to the left, you'll see AWH Events. There you click on Coming Events to get information about Fun Day.

To donate, click on AWH Needs and that will lead you to a donation link.

You can also just mail a check to:

AHEAD WITH HORSES INC.
9311 DEL ARROYO DRIVE
SUN VALLEY, CALIFORNIA 91352

Thanks! Amy

Ricci Kilgore: Another Patient of Dr. Rader

A month from today's date, Soren will be getting his 4th stem cell injection in the Dominican Republic. I am very excited, hopeful, but nervous. We want so much out of these next two injections (we've raised enough money for these next two and then we plan to evaluate their efficacy). I get nervous that, no matter how hard we try, Soren just won't every become close to a typical kid.

But then I see this. My friend Azita forwarded me this

You Tube video

This is a young woman named Ricci Kilgore. She is one of Dr. Rader's patients who is experiencing a remarkable recovery after suffering a devastating spinal cord injury.

It renewed my hope. It brought me to tears. This is what I want for Soren.

Amy

Neurologist Appointment

Soren had his 6 month check-up on Thursday. Aaron and I both went to the appointment and we had quite a list of things to talk about.

We've been wanting Soren to get another MRI and EEG/video-telemetry. With the latter, they do a regular EEG, but it lasts at least 3 days. They also video tape it so that when he has a seizure, they see what it looks like on the outside as well as the inside. The reason we want this is that Soren's seizures have changed in nature, getting more frequent and strong. I actually did a summary of Soren's seizures the past year and, when you boil it down like that, things haven't been going so well. Soren was seizure-free of Infantile Spasms and Tonic-Clonics for a year when he was on Zonegran and Lamictal.

Then last March-May, we weaned him from Zonegran. The good thing about doing this is that Soren became more alert and started turning to his sides. The bad thing (which I didn't really realize until doing this summary) was that the Tonic seizures came back in June and the Tonic-Clonics soon followed. But now with the GFCF diet, the seizures seem to be decreasing. And that's better than adding another drug.

Our hope in doing this testing is that something is discovered that makes Soren a surgical candidate. Yes, I'm saying that we are actually hoping to find something in our son's head that they can cut out and remove. Surgery is, unfortunately, the only known "cure" for Epilepsy. The rest-drugs, diet, voodoo-are just bandaids.

I had asked Dr. Shields about doing these tests again at our previous appointment and he didn't think it was necessary. So this time I brought Aaron to back me up. We expected to have to convince Dr. Shields and had all our arguments ready, but instead he agreed to this right away. Great!

The other thing we wanted to ask him about was Soren's diagnosis. Being honest with ourselves, we know that Soren has Autistic tendencies, but he does not have this as an official diagnosis. So we asked Dr. Shields if, in addition to his Epilepsy, Soren also had Autism. Without hesitation, he said yes.

This didn't make us feel quite as great. Even though we asked for it, it was a bummer to hear it confirmed and confirmed so quickly. However, the good news is that children with Autism get different/additional therapies.

So now we wait to get the tests approved by insurance and the therapies approved by the Regional Center. And we hope that it we get the results we want from all of them.

Amy

Low-Grade Seizure

I mentioned in my GFCF update that Soren had only had 2 seizures in April since we started the diet. Well, he had two more this weekend. And they all had something in common. Soren had a low-grade fever on both weekends when he had the seizures.

The ones in April happened while I was at my cousin's wedding in Lubbock, Texas. Aaron was home with the kids and, wouldn't you know it, Soren had two seizures. Aaron noted that Soren, while not full-blown sick, was running a mild fever.

Then this weekend we all went away for Moira's birthday. We were all sleeping in the same room. I was conked out when in my dream I heard Soren seizing. My brain tried to incorporate it into the dream, but I woke myself up, and there he was seizing at 2 am.

Now this freaked us out because we feared that Soren was seizing at night this whole time we thought he was doing so well. But Soren was a little toasty in the bed, so we stripped him down. The rest of the night and into the day were fine. But then, on the drive home, Soren had another seizure.

Believe it or not, this made us feel better. Since we knew he hadn't had any daytime seizures for a bit, it made us more assured that he hadn't been seizing at night on the sly. When we got home I noticed he was warm again. I took his temp, and sure enough, he had a little fever.

Whatever it was seems to have passed. Motrin helped take his fever down without a problem. I just wonder what those days would have been like if Soren hadn't been on the diet. Would it have been one of those days where he had 9 seizures? While the two we witnessed were lousy, we're glad it was only two.

Amy

GFCF Diet Update

Howdy!

Soren has been on the GFCF diet now for a little over 6 weeks. In that time he has had only 2 seizures!!!!!

I was looking back in my seizure log for this year and was amazed at the difference.

January: 11 seizures
February: 10 seizures (9 of them in one day)
March: 15 seizures

We got Soren fully on the diet on April 2nd. On the 28th he had 2 seizures. He's been through a couple illnesses (a cold, a stomach bug) while on the diet but didn't have the usual breakthrough seizures.

So we're crossing our fingers that this trend continues!

Amy

Dr. Rader ABC 7 Report

Hello all,

A few days ago there was a news report on Dr. Rader and his stem cell therapy. If you are interested in checking it out, go to

Dr. Rader Report

I've always been up front about where we go for our stem cells and the doctor (Dr. Rader) who provides them for us. According to the ABC News Report, he's either a miracle worker or a snake oil salesman. I've actually seen some of the miracles first hand, so you know where I stand. And I happen to personally know the two families involved in the report who have these two very different viewpoints.

The report is actually quite well-balanced. There were fears that it wouldn't be. I've actually been approached by ABC 7 news two times to tell our story. However, due to a bad experience with the press, I was encouraged by Dr. Rader and my friend Azita NOT to speak to the media. Fearing the worst, I didn't.

However, the second time I was approached, I was first called by another friend and fellow special needs mom, Fia Richmond, who was telling her side of the stem cell story to ABC. She had a very negative experience with Dr. Rader. Because of this experience, she started her own amazing organization called

Children's Neurobiological Solutions

Fia wanted me to tell about our good experience with Dr. Rader. However, I knew if any story should be reported, it was Clayton's. Having personally seen this boy first in a vegatative state and now walking and laughing are amazing. I told the producer at ABC that I couldn't be part of the piece and that she should get Clayton. However, I knew that would be next to impossible.

Well, next to impossible happened. ABC was going ahead with Fia's well-justified side of the story. They called Dr. Rader and told him the piece was going to be negative and they only way for him to tell his side was to speak publically. In a possible "damned if you do, damned if you don't" situation, Dr. Rader agreed to speak to convey his side. If when you watch the video he seems a bit on the defensive, I personally think it's because he was feeling very much like he had to defend an attack on what he is doing.

He asked Clayton's family to also be part of the piece because seeing Clayton's success really is like witnessing a miracle. Azita was fearful because of that previous bad experience, but did it out of respect for the doctor that has saved her son. And to hopefully get their message of success out. It's that success that helped us make our decision.

But watch for yourselves. Make your own decisions. That's what we and every other parent who has chosen to go or not go has done. Soren hasn't gotten the full-on miracle yet, but we've seen little miracles along the way. And with these next two injections in June and December, we're hoping to see even more.

Amy

Selling Cels for Soren's Cells!

Hello Everyone!

Well, we're doing it again. Another auction of animation cels on eBay!

My friend Craig Lewis was kind enough to donate a slew of cels to help raise funds for Soren. And then my other friend Anthony Butler was kind enough to put them up on eBay. I'm so lucky to have so many kind friends!

Currently up for auction are cels from "Johnny Bravo," "Powerpuff," "Ed, Edd, and Eddy," "The Smurfs," "I Am Weasel," "Dexter's Lab," and "Rugrats."

Check them out at

Soren's eBay Auctions!

Thanks!

Amy

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!"

Amy

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.

Amy

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.

Amy

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.

Amy