Thursday, December 03, 2009


Well, Soren did his job and had 2 seizures this morning. I did my job and pushed the button when these happened so that it made a little mark on the EEG and he was clearly recorded on the video. The doctors then did their jobs and looked everything and gave us the info.

Soren IS NOT having Juvenile Spasms. He is having Tonic Seizures. This is actually good news because Spasms are a pain in the butt to control. Plus, as I mentioned earlier, they wreak havoc on your vision.

So we are dropping out his Lamictal and adding Topomax. And he will continue his Depakote and Clobazam. We'll see if this combination works better than the other to control the Tonics.

But we are now safely home. Soren still has some leftover junk in his hair despite my giving him a hearty scrub. It was a stressful 24 hours, but we did well!


Wednesday, December 02, 2009

EEG Telemetry at UCLA

Today Soren is going in for a routine EEG Telemetry test at UCLA Medical Center. The test should be about 24 hours. I believe I've written about them before. It's a prolonged EEG with the combination of a video camera filming Soren. The EEG is to measure his brain's seizure activity. The video is to monitor what happens to Soren visibly on the "outside" when the seizures occur.

So our goal today through tomorrow is for Soren to HAVE seizures! As I noted in a previous post, Soren is apparently having Juvenile (Epileptic) Spasms again. These were previously called Infantile Spasms, but because Soren is now 6, they have a new name. Soren now has a new neurologist who wants to confirm that these are, in fact, the kind of seizures he is having. Spasms have a distinct pattern called Hypsarrythmia.

We believe these seizure returned over a year ago. Despite trying new combinations of meds, we still don't have full control. However, he's only having 3 a day. Only, you say? Well, considering he used to have hundreds of these a day when he was a baby, 3 is a vast improvement.

And the Spasms knock him out less than the Tonic-Clonics he used to have. He tends to have a quick one, be fine for about 10 minutes (resuming his activity from before the seizure) but then he conks out (is post-ictal) after that 10 minutes. This makes it very tricky when the seizure comes right before I feed him. I'll get the meal started, and then he'll pass out.

However, Spasms REALLY do a number on your vision. Soren's vision was actually improving nicely a little over a year ago, but then the Spasms returned and his visual gains were lost.

So, we want to confirm that this is what he's having. If they are, we will try some different meds (unfortunately, these are meds we tried years before that did not work at that time). If they are NOT, we will also try different meds, since they ones he's on aren't really doing the trick.

To prepare for this test, I can't give Soren any solid food today until he's hooked up to the EEG. They'll have to sedate him since he's such a wiggle-worm and you have to get the leads in the right places for the test to be accurate. So I got Soren's meds in with clear liquid (juice) today. Not his favorite. My boy likes his milk.

We won't check in to UCLA until 11:00. We'll probably be in the room by 1:00. Then we need to get him knocked out and hooked up. After he wakes up, I can feed him. I have no idea what Soren's mood will be going without food for this long. The only time he really doesn't eat is when he's ill. Should be interesting.

Then we hang out in our hospital room all day through tomorrow. I'm not supposed to leave the room because I'm officially the camera woman for this shoot. When the seizures hit, I have to make sure they get that visual!

So, it's against my usual way of thinking, but today and tomorrow I'm actually hoping for seizures while he's hooked up and on camera. The sooner he has them, the sooner we get to go home!


Monday, November 16, 2009

Soren Update

Almost a year ago, Soren started having Epileptic Spasms again. We have struggled through this year, playing with meds and diet to try and get control. Unfortunately, we simply haven't. While these seizures are fewer and far between than previous seizures, these are really hard on Soren's vision. And any time he has seizures, progress made is erased. I actually realized that I haven't heard Soren laugh in a long, long time. I fear that either the seizures or the meds or the combination is wiping these out.

Not hearing your child laugh is really hard. I mean, I know he's a content boy, but when he used to laugh, it really drove home that he was happy. That he found things amusing.

So we will continue on our quest to get seizure control. Soren's neurologist is retiring, so maybe fresh eyes will think of something new that will help our boy. And hopefully his infectious laugh will return.


Tuesday, September 22, 2009

Happy 6th Birthday, Soren!

My handsome boy, Soren, celebrated his 6th birthday today!!!


I sent him off to school with Birthday Brownies, which were greatly enjoyed (especially by Soren, who loves the chocolate).

For his birthday, we got Soren a cool new piece of equipment called a Straddle Sitter. It is so AWESOME! Soren can sit up well enough, neck and trunk-wise. He just needs that balance in the back. And this totally does it for him. He can sit in this for over an hour. Of course, at therapy, he was being a pill and scooting his butt forward so I had to keep adjusting him. But normally, I don't have to do anything. He'll happily sit while we watch T.V., cook, or whatever.

In the afternoon, Soren had music therapy. HAPPY BIRTHDAY, SOREN!!!

Monday, August 10, 2009

Safety Bed

Soren didn't used to move too much in bed. For safety's sake, we put a baby gate on his bed, but we never really felt he needed it. We'd lay him down on his back and he would stay there. Sometimes he would turn to his side, which would lead to him getting on his belly, but that was about it.

Until about a month ago. Now that boy is wiggling and scooting. He gets on his belly, often trapping his arm. And how he's insisting on pushing on the gate.

Not being a small child, as the gate was intended to protect, when Soren puts his weight against this gate, it moves. He's gotten himself wedged between the mattress and the gate. And he's fallen out of bed. Twice.

He did this last night and so now I'm looking into safety beds for kids with special needs. As usual, this will be a BIG ticket item, so we are working on the insurance procedures.

But if any of you parents of special needs kiddos has experience--good or bad---with any of these beds, I would love to hear it. Since it is a pricey piece of equipment, we hope to get one that will last a LONG time! Any advice would be greatly appreciated!



Thursday, July 09, 2009

New Class, New Teacher

Soren's school has a summer session, and since Soren is 5 going on 6, he was moved up to the next class. This made me a little nervous, since he has been with the same teacher since he was 3. She is awesome and challenging and has been so great for Soren.

But it seems that Soren is adjusting. It took a couple days. I got some notes back saying that Soren was doing some heavy napping. This is his way in a new situation until he feels it out. It's a defense mechanism.

He started in the new class on June 29th. And now, on July 9th, he seems to have adjusted. He went from being attentive 75% to 80% to 90%. That's pretty darn good for our boy!

And he's really seeming to respond to music. His previous teacher noted this when a Marimba band came to perform at the school. Now his current teacher is noting that Soren is responding to music as well. We've been doing some music therapy for the past 4 months or so, so maybe this is waking up some senses.

Anyhow, in the end, while change is scary and sometimes hard, it's also hopefully for the best and helps move things forward.

That's what I'm hoping for my mysteriously musical little boy.


Sunday, June 28, 2009

Quick Update

Ah, once again I have been neglect in my blogging duties. I apologize. I've been very busy. Here's a quick update...

1.) Soren is now off the anti-virals after we decided they were not the appropriate mode of treatment.
2.) While on the meds, I did get into the habit of feeding Soren breakfast and a snack, which he chowed down with great abandon. Turns out the poor boy was hungry! In the past month, he's gained almost 2 pounds due to this calorie increase.
3.) I took Soren off avocado. But he ended up having a few seizures anyways, so I brought it back.
4.) I discovered that Trader Joe's Edamame and Egglant Hummus are delicious. Soren thinks so too!
5.) Soren's seizures/spasms have been few and far between.

Soren's still staying off cow's milk and cheese at the moment since we actually think this may have helped decrease the seizures a bit. Actual allergy testing may be in Soren's future.

That's it!


Thursday, May 28, 2009

Making New Habits

We all know it's not easy to make new habits and very hard to break old ones. Which is the struggle I am facing now.

Soren is now on an anti-viral medicine. It is a medicine that is to be given three times a day. I give Soren all his meds in the am and pm. And I don't want to bother his school with the middle dose if it ends up not being permanent.

So I'm doing it. Or I'm trying. But this is very much not in my routine, so I'm struggling.

There are various components to my struggle.

1.) The lunch meds...I do well on the weekends, when I feed him lunch. But then when he's back at school, I forget to give him his afternoon dose when he gets home from school. Ugh.

2.) I'm also supposed to be giving him a multi-vitamin, something I've been incredibly lax about doing. I think I gave it to him one day and then have forgotten since.

3.) Soren is currently on 5 meds (3 anti-seizure, 1 antibiotic, 1 anti-viral) In the morning, I used to just plop the pills in his mouth, give him his bottle, and have him swallow them down. Now there are so many, he's choking! And it's not a big breakfast kinda guy.

4.) Due to the diet changes, I need to make sure that Soren is getting in enough calories, so I need to add more food.

So this is the habit I'm trying to form.

1.) Feed Soren a little breakfast (emphasis on little) just to get the pills down. Some banana and Rice Krispies, maybe some Cream of Wheat (if it's allowed). Just something that will do better and no choking.

2.) Feed Soren a little snack after school. Usually he gets off the bus and I just let him chill in his vision box until dinner. But today, having forgotten his lunch meds at Feeding Therapy, I fed him a snack. Now, mind you, he had CHOWED DOWN at Feeding Therapy.

Well, clearly the boy was hungry, because he then wolfed down the snack, pills and all.

Wish me luck. I am a creature of mainly bad habits but I'm hoping these good ones will stick.


Monday, May 18, 2009

Okay, I'm Back!

Sorry I have fallen off posting yet again! Life has been crazy-busy work work (yay!) and illness (boo!). Soren had a stomach bug right after Spring Break, then a week later he had a fever, then that Friday, his fever returned and wouldn't break. Finally I got him into the doctor and discovered that it was an ear infection. Got Soren on the mend, and then Mo got a cold!

The good news through all of that for Soren is that he had very few seizures---something that is very rare in that situation. We are now seeing a neuro-immunologist who has recommended I take Soren off dairy and put him on anti-virals. I did the dairy first and the lack of seizures continues (last one we saw was Mother's Day). I started the anti-virals today, so we'll see if there is any change.

Next I need to remove avocado, which is going to be hard. 1.) Because Soren loves it and 2.) Because I have very little cooking imagination. But we have a great cookbook on delicious and healthy foods for babies. I will delve into it and see if I can widen Soren's repertoire.

I promise to keep you updated on any changes!


Wednesday, April 01, 2009


We started Soren on Depakote a few weeks back and are getting some really good results. While we weren't thrilled with the thought of having Soren on 3 anti-epileptic drugs again, with the looping Juvenile Spasm Clusters, it was clearly necessary.

Our original plan was to keep him on as low a dose as possible. The theraputic dose for Soren is 2 pills twice a day. There's no way to split these pills, so I started him on one full pill. It immediately cut down the clusters, just giving him one spasm now and again. But within 5 days, the clusters were back, so we brought in the morning dose.

Again, things got better. We went longer without clusters this time. But then they kicked back in, so we went up to a full dose in the evening. That was last Thursday and the clusters are gone again. I've seen one or two spasms, but nothing really bad. I'm hoping that once this is fully in his blood, it might do the trick. If not, I'll go up that last bit.

I'm pleased that this has knocked down the clusters. Hopefully we have regained some seizure control!


Saturday, March 07, 2009

Seizure Update

So as I wrote previously, on December 3rd, Soren started having what I thought were Absence seizures. They started the night I started Soren's Zonegran wean, so I knew that the two were not related and continued to wean him.

As the wean progressed, the "Absence" seizures grew in length and frequency. Finally, the weekend of February 21st, Soren started having these seizures in clusters. So I contacted his doctor and got the okay to increase Soren's Lamictal dosage.

However, his doctor was concerned and fit Soren into his very busy schedule to check him out. I knew that the chances of Soren having a cluster in front of Dr. Shields were slim, so I video-taped him seizing and burned it onto a DVD. I'm so glad I did, because sure enough, Soren seized in the waiting room, but was happy as a clam in the exam room.

Turns out these are not Absence at all. They are Epileptic or Juvenile Spasms. Now Soren used to have Infantile Spasms, but since he is no longer an infant, they have a new name. Dr. Shields was clearly bummed about this development because we have been on all the "go to" drugs for Spasms. We discussed bringing him back on Zonegran, but I was confident that it would do nothing.

Instead, we have increased his Clobazam by have a pill in the evening. In a couple days we will add another half to the morning dose. If that doesn't work, we are going to start a drug Soren's never tried called Depakote. I know from other parents of kids with Spasms that the Clobazam/Depakote combination is a good one.

I'm hoping the Clobazam increase does the trick, but we'll see what happens. The good thing is he recovers from these just fine--bouncing right back as if nothing happened.


Sunday, March 01, 2009

Little Loops

Hey all,

I know, it has been FOREVER!!! I apologize, but life is busy.

The "little loops" I am speaking of are the Absence loops that Soren has been getting into. They started last weekend (Feb. 20). I noticed it when I was feeding Soren. He had an Absence and recovered. Then he had another. And another. This went on for a solid 3 or 4 minutes. I was actually fearing I was going to have to give him Diastat.

But then, as oddly as they started, they stopped. He was fine, alert, and finished eating as if nothing had happened. He did the same thing on our drive home (we were in Scottsdale). But it passed and all was well.

So I sent an email to Soren's neurologist on Monday and got the okay on Friday to increase his Lamictal by 25 mgs on the evening dose. So we'll see if that has any effect. I'm a little doubtful because the Lamictal doesn't appear to do much, but I could be wrong. I hope I am.

I'll keep you in the loop on the loops.


Sunday, February 01, 2009

One Week To Go!

A week from today, Soren will have his last dose of Zonegran. I am really looking forward to this.

For one, I keep almost blanking on his morning dose because now it's down to 1 pill, only in the morning. Since it's so irregular, I'm beginning to forget.

Second, I'm thinking (and hoping) that the Absence seizures are subsiding. I saw 2 very brief ones today. I mean REALLY short--if I'd a blinked, I'd a missed 'em. And we spent the ENTIRE day together. I even checked in with Aaron to see if he'd seen something I hadn't.

So I'm going to get Soren off this drug and give him a little time to get it completely out of his system. If he's still having some Absence, I'll check on upping his dose of Clobazam. He is clearly growing, so an increase might be needed.

But if they subside, I'll do a happy dance and call myself "Lucky Mama."


Friday, January 23, 2009


Soren has continued to have the Absence/Tonic seizures. And while he still bounced back super fast as if nothing happened, they have also gotten stronger and are lasting longer.

I'm hoping against hope that this is all due to the withdrawal of Zonegran. Soren is now on 25 mgs morning and night. The night dose is being dropped on Sunday. And the last morning dose will be eliminated 2 weeks after that. In my fantasy world, once all of this drug is out of his system, the seizures will dissipate.

He has been extra chipper yesterday and this morning. Yesterday after school he was talking and talking. They had done a film shoot at school, so I wonder if he was trying to tell me about how exciting it was. Then at Mo's gymnastics, he started laughing so hard, he had Mo's class busting up as well.

Then this morning he woke with a smile. After he drank his milk he snuggled into me and listened to Aaron, Mo, and I talking about our plans. He smiled even bigger whenever Aaron or Mo were talking and buried his head even closer in to me. He does love his family.

So maybe, just maybe, his body is adjusting to the withdrawal and he's feeling better.

At least that's what I'm going to think it is!


Tuesday, January 06, 2009

New Year Update

Happy New Year to All!

Well, our New Year's Day was way less stressful than last year. As you may recall (I know I do), January 1 of 2008, Soren had looping tonic-clonics that caused us to give him not one, but two doses of Diastat.

Amazing what can change in a year. Soren now no longer has tonic-clonics and hasn't needed Diastat in over 6 months!

He is continuing to have the Absence seizures, some now involving his body tensing up. Sadly, even Moira now knows how to identify such unusual behavior. Soren has been doing this since early December, but I was the only one who really caught them. But as the tensing has been added in, they are far more obvious. This weekend, Moira saw him do this while I was out of the room. She came to me and said that Soren did something weird. But it wasn't a seizure. She described it and I told her that, in fact, it was a seizure.

I'm hoping that the more pronounced version of these seizures is a result of the weaning of the Zonegran and that they will disappear once it is fully out of his system. We'll see. If not, I still don't think the Zonegran was helping anything, since I saw one of these while he was still on the stuff. We'll bring it up with Dr. Shields at our next visit if they are still happening.

But all in all, 2009 is starting out much better for our boy. He's happy and responsive. The way he reacts when Aaron walks into the house after being at work is so wonderful. Last night he was smiling so big he practically wiggled and kicked his way off my lap. He knows his Daddy!
I wish you all a happy and HEALTHY 2009!