One Week at a Time

We added the dose of Zonegran to Soren's meds a little over a week ago. The day after we added it, he had a couple brief tonic seizures. But since then, he's been good. Not any more drowsy than usual and currently no seizures. I can't say that it's the Zonegran per se, but I'll take a week of no seizures for whatever reason.

Amy

Shameless Self-Promotion

I know this is a blog about Soren. But since lots of friends and family read this, I figured this was the easiest way to get the word out that the episode of Danny Phantom that I wrote will be airing for the first time this Friday, September 24th, on Nickelodeon!

It's called "D-Stabilized" and will be showing at 1:00 EST and 4:00 PST, but check your local listings.

I actually started writing it back in December of 2005 and, with changes and punch-ups, had a final script by April 2006. Then all the drawing and animating had to happen, which takes some time. I haven't seen the final product and am really excited that it's airing!

So check it out if you're interested. It's a fun show and I felt really lucky to have a chance to write on it before their final season ended.

Amy

The Results

We finally got our call from Soren's pediatric neurologist today. Unfortunately, it was not the news we wanted, but it was the news that we had figured. The test results are not definitive enough to perform surgery.

The EEG showed that there are more things going on in the left posterior of Soren's brain than the right. But there are still things going on in the right.

The PET scan showed diffused abnormality, but more on the left than the right.

And the MRI was also "diffusely abnormal" with no clear area to perform surgery on.

So they felt that performing surgery on Soren would not clearly benefit him.

But, this is, of course, not the final word. We now plan to get copies of the tests and get 2nd opinions. You never know if somebody might see something differently. And there are certain surgeons out there who are willing to try something more "daring."

We also went to Soren's pediatric neuro ophthalmologist today for a check up. While he could see that Soren's eyes were still good and straight, he was disappointed that Soren had not made more progress as far as looking at objects when asked. Of course, Soren is more than happy to LOOK AWAY from an object when asked. And whenever the doctor turned away to get a new toy, Soren would look straight at him. Stubborn, opinionated, and crafty. Aaron and I wonder where he could have possibly gotten those traits.

As usual, the "answer" to all this is better seizure control. Which is why we are now considering putting Soren back on a low dose of Zonegran to combine with the Lamictal he is already on. We had a good year of seizure control when he was on these two drugs, though we thought it was just the Lamictal that was helping. When we weaned him from the Zonegran, he became much more alert. But a month after he was off the Zonegran, his seizures started slowly coming back.

So there we are, with more information, but still in the same place. Frustrating, but we move forward.

Amy

Still Little News

After harassing the crap out of the UCLA peds neuro folks, I finally spoke with a doctor. Unfortunately, it wasn't Soren's doctor! His doctor is out of town until this Tuesday. FRUSTRATING!!!!!

So the doctor on call told me basically the same old stuff. The MRI showed nothing. The PET scan showed that "the left temporal lobe had decreased metabolism." And she didn't have anything on the EEG. So actually, it was less news!

I asked if she could tell me what was said when the surgical team discussed his case. She said she couldn't because since Soren isn't her patient and everyone talks really quickly, she didn't catch what they said about him. It's the responsibility of the child's physician.

Argh! I have messages into his doctor for when he returns on Tuesday. I'm sure he'll be swamped with other annoyed and anxious parents, so who knows when I'll hear from him.

That all said, Soren has a cold and had a crappy day yesterday. After 6 seizures, I gave him Diastat and knocked him out. He's still sick today, but no seizures so far. In typical "feeling lousy" behavior, he's not eating much, but still drinking his almond milk. Right now he's kicking and happy on the floor and less covered in snot than yesterday.

Amy

Still Nuthin'

Sorry it's been a week with no news, but nobody has gotten back to us! I've put in my calls and plan to bug more people tomorrow. But until somebody tells me something, I have nothing to report.

Soren's been having a few tonic and tonic-clonic seizures every couple days. It's tending to just be one or two. Not anything "major" where we have to reboot him with the Diastat. Not that it makes those seizures any less stressful. I was actually at a writing class the past four days while Aaron took care of the kids. He's the one who had to deal with the stress of it all.

In other, non-test result news, we're planning for our December trip to the DR. For now, this will be our last. This is mainly because we will run out of the funds we've raised! But we got three treatments out of that money, so thanks to you all!

The other reason this will be the last for now is that we want to let things percolate in Soren--see how his development goes after this 5th injection, weigh this treatment with other therapies.

Anyhow, that's where we are today. Again, I promise to write when we have a test update.

Amy

No News is, well, No News

I'm sure, like us, you are waiting to hear what the results are from Soren's testing. And I would like to tell you, but nobody has contacted us yet. I'm trying not to freak out or get too bummed about this. However, I don't think I'm doing a very good job since I have a big old tension headache just thinking about what his doctor will say.

Anyhow, I will post once I have news of any sort.

Amy

Back from the Hospital!

We actually were discharged yesterday and were home in time for dinner because Soren performed so well!

We were admitted on Monday afternoon. Soren was hooked up to the EEG/telemetry and his PET scan was scheduled for the next morning at 8 am. Their plan was to get that scan before Soren had any seizures. Once the scan was done, we were going to drop out Soren's drugs and get seizures on record.

Well, Soren had a different plan. After We an uneventful night (though not really very restful), they took Soren off right on time for his scan. He hadn't had his morning meds yet and I thought it might be better to get them in after the scan. They got the IV into his arm and as they were stabilizing it, Soren had a seizure. It was a short tonic seizure and we caught it on the EEG and video.

The only problem was that we now couldn't do the PET scan because the readings wouldn't be accurate while he was post-ictal. So back up to the room he went. At this point I was very frustrated and kicking myself for not giving him his meds (though this wasn't the cause and I knew it). Soren then had 4 more seizures, giving them great examples of how he seizes (what a boy!). With those on record, the neurologist decided we should give him Diastat to stop the seizing and get him back down to the PET scan.

So we did that, got him back down stairs, knocked him out (not that he was that awake) and did the PET scan. Then, as he was still sedated, they shuttled him even further into the bowels of the hospital and did the MRI. Wham! Bam! Done! Soren was brought back up to the room, woke up, ate (his first meal of the day) and they gave us the boot!

The preliminary readings are inconclusive. The EEG indicated activity on the right side of his brain, the PET scan showed nothing, and the MRI showed something on the left side of his brain. Ugh! But they are going to get the complete results, compare all the tests, and have a meeting on Monday about if he's a surgical candidate.

Yesterday, before the PET and MRI, my hopes were very high. Now, after the preliminary results, I'm trying not to get excited or disappointed.

Soren is in great spirits today despite the insanity of yesterday. I'm exhausted. So we're just going to lay low today.

Thanks for all your good thoughts!

Amy

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