Update on Senate Bill 1051

Thanks to the outpouring of support from all of you, the Diastat bill (SB 1051) has passed through the Senate Education and Health Committees.

Unfortunately, this past week, Senate Leadership put the bill in the "suspense" file, placing it on hold due to STRONG UNION OPPOSITION. Both the California Teachers Association and the California Nurses Association oppose this bill. And while I LOVE TEACHERS and NURSES, their unions opposing this bill only hurts our kids with epilepsy.

But, there is still hope because Senate Leadership has the power to free this bill from the Appropriations Committee. And YOU can make the difference!

Please help kids like Soren by taking less than two minutes to call Senate Leadership urging them to free the bill and protect the 63,000 California school children with epilepsy.

Contact Information:
Senator Steinberg (Senate Pro Tem President): (916) 651-4006
Senator Christine Kehoe (Senate Appropriations Committee Chair): (916) 651-4039

Message:
I am calling to support SB 1051.

If they ask for more specifics, say ask them to please release this bill from Appropriations and protect children with epilepsy.

THANK YOU ALL SO MUCH!!!

Amy

Support Senate Bill 1051

Hello everyone,

Today I have something very important to tell you about.

Senate Bill 1051.

This bill would allow for VOLUNTARY training for non-medical school staff to administer Diastat, a life saving drug, for seizure emergencies.

What is Diastat? Diastat is a safe and easy to use medication, FDA approved for use by non-medical caregivers such as parents, teachers, babysitters and the like.

Why is this bill important? Well, if a child with Epilepsy is in school and begins having non-stop seizures (also known as Status Epilepticus or just Status) Diastat can be administered via rectal syringe to stop the seizures.

However, under the current rules, only a medical professional is allowed to administer this. Now Soren is lucky in that his school has a full time nurse.

But as we know, many school do not have school nurses on site full time. So in the event of a seizure, they have to call 911. For our kids, by the time the ambulance has shown up, the seizures will have gone on WAY too long and done WAY too much damage. Thus, children with severe seizure disorders, like Soren's friend Camille, cannot go to public school because of this "only nurses" rule.

With the passing of this bill, non-medical staff can volunteer to be trained to give this medicine in school.

Now the nurses union wants folks to believe that only nurses have the skills to administer this. But this is totally bogus! I--who have no medical background--have been "trained." Meaning I read the directions, gloved up, got some lube, and put the syringe up Soren's rectum!

And there is no way to give the incorrect amount because the syringe is set to the appropriate dosage for the child. Frankly, it couldn't be easier!

But to pass this bill, I need your help!

The bill is up for a vote in Appropriations tomorrow (5/27), following difficult, but successful votes in Education & Health. Hundreds of letters from supporters helped lend courage to our elected officials in the face of formidable union opposition.

But now YOU can help by taking less than two minutes to call the Senate President (Darrell Steinberg) and the Appropriations committee chair (Senator Kehoe) to log your support. They will ask for your name, your city and your position on the bill.

I just did it and it was super easy. I called to say I wanted to state my support of Senate Bill 1051. They asked for my name, my city, and my position on the bill.

If YOU are in support, PLEASE call TODAY:
- Senator Darrell Steinberg (916-651-4006)
- Senator Christine Kehoe 916-651-4039

This bill does not impose a fiscal burden on the state and without the passage of SB 1051, thousands of children will be placed at risk of brain damage and death.

There is overwhelming support from the medical community (CA Medical Assoc, Assoc of CA Neurologists, UCLA, USC, Stanford, etc), as well as parents and teachers and nurses who work directly with children in the schools.

If we are successful tomorrow, the bill will go to the Senate Floor for a full vote and then hopefully to the State Assembly.

If you want to learn more, Steve Lopez wrote an article (in LA Times today) which discusses the issue and mentions Soren's two good friends Clayton and Camille.

LA Times Article

Please help children like Soren get this life-saving medicine available in the schools!

Thanks!

Amy

Still Struggling

Despite our best efforts, Soren has been having a rough time this past month with his seizures. We thought we were seeing some progress. We brought back Lamictal and started hearing him laugh again.

But they laughs are gone again. At least for us. I hear that he laughs at school. Hmmmm.

And his seizures, though brief Tonics, are WHOMPERS! I wouldn't be laughing if these things hit me either! They actually elicit a vocal "HUH!" out of him they hit so hard. It's like he got socked in the gut. Which I actually think it might feel like because his stomach muscles contract and his arms and legs stick straight out.

He also seems to know they are coming sometimes. Sometimes he's fussy. Sometimes he "talks" more. There's clearly more awareness. I just wish I knew what he was experiencing.

There are dogs that can sense seizures coming on in people. I wish I had that sense! Or that Aaron and Mo weren't allergic to dogs. Or that I didn't have enough on my hands without adding a dog to the mix. Or that they gave those dogs to people as disabled as Soren. Unfortunately, none of those wishes are going to come true. So we just have to be there for Soren when the seizures hit.

Clearly we need to work on the meds some more. Hopefully we can decrease these seizures. Hopefully we can get that laugh back.

Amy

New Neurologist, New Results

Soren has been with the same neurologist since he was 9 months old and started having Infantile Spasms. His doctor is one of the top in this field, dealing with many chi;dren who have hard to control seizures. During our time with this doctor, Soren has had many changes in his seizure type and we have juggled medicines trying to get control.

But this wonderful doctor is retiring so Soren got passed to a younger neurologist. I didn't feel she had the experience to deal with Soren's seizures. As much as she tried, she didn't seem to be able to think outside the box. And Soren is WAY outside the regular seizure box.

So we made a change. At Soren's pediatrician's recommendation, we went to a new neurologist. And I have a really good feeling about her. She sat down with me and Soren and went over my 22 page history of him point by point. She marked-up this history, noting med changes. I could see her brain trying to figure out the puzzle that is Soren. She told me drug side-effects that I didn't know about that have been contributing to his recent struggles.

She then laid out a plan for his meds. Decreasing things here, adding things there. And then she wanted to see us back in one month--also noting that I could call her nurse any time if we had troubles.

The great thing is that these changes are having a wonderful effect on Soren. While he's still have a seizure now and then, I haven't seen them everyday like before. He's also much happier. We hadn't seen smiles or heard laughs from Soren for a year. This past month we've gotten both and it's like getting our sunshine back. He's much more alert, eating better, talking more. It's amazing.

It's good to know that even when you have a kid with seizures as tough to control as Soren's, hope is still out there!

Amy

One More Word on One of My Least Favorite Words

The word "Retarded" and "Retard" continue to be in the news thanks to that charm-boy, right-wing icon Rush Limbaugh.

And what's sad is that Sarah Palin--a supposed "comrade-in-arms" for children with special needs, the woman who asked for the FIRING of Rahm Emanuel for the use of this same word, says that Limbaugh's use of the word "retard" while "demeaning and crude" was also "SATIRE."

First of all, here's what Limbaugh said...

"Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are loony tunes. (Amy note: I guess if you redefine "retarded" as "crazy" it's not a slam against people with learning disabilities. Just people with mental illness. THAT's okay, right?) Limbaugh continues, "And I’m not going to apologize for it, I’m just quoting Emanuel. It’s in the news. I think their big news is he’s out there calling Obama’s number one supporters f’ing retards."

"So now there’s going to be a meeting. There’s going to be a retard summit at the White House. Much like the beer summit between Obama and Gates and that cop in Cambridge."

When asked about this quote, Palin defended Limbaugh saying he was using "Satire" because he was quoting Emanuel's use of the word.

But I think this is a load of crap. Yes, Limbaugh was using the word because Emanuel used it. But Limbaugh's comments were not satirical. They weren't even the asinine, off-the-cuff comments of Emanuel.

Limbaugh's use of the word "Retard" was exactly what Palin is SUPPOSEDLY against.

Limbaugh used it NOT as a poorly chosen adjective to replace "stupid" as Emanuel did. Limbaugh used it to be MEAN. He used it, in my personal interpretation, specifically and purposely calling these liberals retards. His goal was to insult these people by comparing them to people with with developmental disabilities. It was supposedly meant as a, "Ha, ha! Those guys really ARE retarded." Well, you know what, they're not! And just because you supposedly mean it as a joke doesn't make it any more acceptable.

He then called Emanuel's meeting with a group of advocates for the disabled a "retard summit." Okay, what is satirical about that? That was PURPOSEFULLY cruel against advocates of people with special needs. He used it EXACTLY the way Palin ACCUSED Emanuel of using it (which he didn't). He used it like the "N-word."

It was NOT satirical. It was purposeful. Purposefully mean. He tried to couch it, changing the definition to be "kooky" and "loony tunes." But that is NOT what was intended in the use of that word. And Sarah Palin KNOWS it.

Unfortunately, I think that her speaking out against Emanuel originally about this word was really just a convenient political move. Now that she has to speak against a hugely popular conservative, she can't be as FIRED up about the use of that previously heinous word.

And now, more reports of conservatives using this word are coming out. David Carney, a campaign adviser to Rick Perry, was recently quoted using the word. And Sarah was quoted with a similar soft-pedaling admonishment once again merely calling the use of the word "crude and demeaning." Guess she can't stand behind her convictions for her child quite as strongly when it interferes with her political agenda and her own party uses the word. Sad.

But the point is, LOTS of people use this word. Liberals hot-heads like Rahm, conservative hot-heads like Rush, women in the hair salon, children on the playground, and even at one time, me.

But we shouldn't.

And maybe I, as a parent with NO political agenda, can ask that whenever you have the instinct to say that word, stop and think of Soren.

When you want to say, "that's so retarded" or "what a retard" realize that to ME, you are saying that my son, who has been BRANDED by this word, is stupid. That he is dumb. That he is worthless. And, thus, worth less.

Think of this boy. This boy who, sadly, doesn't have the words to defend himself. But he has me. I will speak for him. I will always speak for him. Even when-and especially when--those who SHOULD won't!

Amy

Sarah, Rahm, and "Retarded"

I'm sure lots of you have been hearing about Rahm Emanuel using the word "retarded" recently and Sarah Palin's Facebook response. If not, you're hearing about it here.

Let me say upfront that I am not a fan of Sarah Palin. Though I'm not sure that I'm really a fan of Rahm Emanuel either.

But politics aside, Sarah is a mom of a child with special needs, so her perspective in this situation cannot be denied. Having a child with developmental delays myself, I understand Sarah taking offense to Rahm's use of this word. And I actually appreciate her speaking up about this misuse.

However, in all honesty, I'll bet you dollars to doughnuts that prior to the birth of her son, at some time in her adult life, Sarah used the word "retarded" in much the same way. Why am I willing to make such a bold wager? Well, because I used to use this word this way!

I've written about this before but it's buried deep in this blog. So let me state it again. Before Soren was born, "retarded" was part of my vocabulary as an adjective used in place of "stupid" or "dumb." For me, "retarded" had more "Zing!" so to speak. It seemed like more of a rebellious word. And I'm quite the rebel.

Then, after Soren's delays became known, I actually CONTINUED to use it! With some defiance, I must say. I was, like, "You're not taking that word from me just because my son has developmental delays!"

Guess I was the one who really had a lot to learn.

As Soren's delays continued and I became more immersed in the special needs community, I began to accept how inappropriate and hurtful this word is, even when folks say it casually like I used to. For those of us combating the diagnosis of "Mental Retardation," or "MR" as it's commonly referred to, this word has deep resonance. And its misuse is like a knife in the gut.

Most people I know merely use the word the way Rahm did. As an adjective. But because I used to say, "That's so retarded" for years, when I hear others say it now, I just let it slide.

But then there are the times it's used as a noun, as in, "What a retard." Now that one REALLY gets me. It's really hard NOT to say something.

But it's also almost impossible for me TO say something. My fear is making people feel uncomfortable or awkward about my situation. Or making them self-conscious when they speak around me. I was actually in the hair salon today writing this and overheard a woman say it! But I said nothing. I just took the hit and let the wound heal.

And while I agree with Sarah speaking out about this, I disagree with her comparing "Retarded" to the "N-word." Now this is a personal issue, so maybe that's REALLY how she feels. But I don't really think so. I think her comparing "Retarded" to the "N-word" just guaranteed it to stand out more when the press picked up the story.

For me, the two words incomparable. In my life, the "N-word" was always meant as a slur. It always meant as mean and hateful. But "Retarded" has had more of an evolution into its current "inappropriate" status.

I liken "Retarded" to the word "Gay." Now when I was young, lots of people, including me, said, "That's so gay." And it was, obviously, meant as an insult. Well, as the years passed, people began to realize that the gay community takes offense at using this word this way! And rightly so! Thus people in general have stopped using "Gay" in this manner.

So, yes, I am glad that Sarah Palin spoke up about this. Awareness must be raised that the casual use of this word can be very hurtful to people. Maybe this is a step in that direction.

Amy

Disneyland with Soren

Aaron and I have always loved Disneyland. That love was easy to pass along to Moira. Soren always comes along, but we're not always sure how much he enjoys it. It's bright, it's noisy, it's overwhelming! But yesterday, he really seemed to like it all, staying awake for the majority of our visit.

He's a big fan of the dark rides: Peter Pan, Pirates, Alice, and the Tiki Room. He LOVES the Tiki Room. Always has. Yesterday, he was actually taking his one nap right before we went in. But once the lights dimmed and the birds started talking, Soren peeked his eyes open. And when the music began, his eyes were wide open and he was kicking, talking, and watching. Watching him enjoy it makes it my favorite.

We also did Buzz Lightyear, which we've done before. Usually we go to the special wheelchair transfer area and unload Soren, sitting him on our lap for the ride. But this time, the Cast Member asked if I wanted Soren to stay in his chair. The Buzz ride has ONE car that has a ramp to roll a chair into and a little seat next to it for the other person. And as luck would have it, it came by right when we arrived.

Always eager NOT to lift Soren, I wheeled his chair in and sat beside him. It was SO awesome! Soren was much more comfortable and got a way better view of the ride. This time he was really looking around at all the amazing colors. He was a little annoyed with me helping him fire the blaster, but oh well.

But the BEST thing that happened was on the Haunted Mansion. This has always been one of my favorite rides. I remember riding it over and over again as a teen one time when there were no lines at Disneyland. But I always wanted to see where the "Doom Buggies" went after you hop out onto that conveyor belt/people walk thing. I used to imagine jumping back into it, hoping the Disney folks wouldn't notice (which of course they would and then I would have gotten in big trouble).

Well, because of the kids, I hadn't been on the Haunted Mansion for about 10 years. Moira wasn't ready for it until this year. So we decided to brave it. But we had no idea how it all worked with the wheelchair. I mean, you leave out a different area than were you start in the Doom Buggies.

The first part was completely the same, going down in the room with "no windows and no doors." Then when it was time to load into our Doom Buggy, they slowed the conveyor down a bit so we could get Soren out of his chair. (NOTE: I now know that one of the reasons the Doom Buggies stop during the ride is because of this!) So we rode to the end, where we usually get out. But this time they stopped the ride and told us to stay in our Buggies.

Then my childhood dream came true. They started the ride again and we got to go "behind the scenes" in our Buggies! It was such a simple, silly thing, but it made me so happy! And just so you know, the Buggies just loop around and come back out to pick up people.

And as if that wasn't enough to give me my dork-fix, we got a bonus! To get to ground level and out of the ride, we rode the elevator back up! So we got to see the paintings go from stretched back to normal. It was so cool!

I've gotten quite an education since Soren came into my life. And yesterday it was a fun education, Disneyland-style.

Amy

Hungry Boy

It's been a little be of a rough start of the new year for Soren. During Christmas break, he caught a cold that led to an ear infection. So he had a little delay returning to school. But now he's back to his chatty, hungry self.

Which leads me to the funny thing that happened yesterday. I send Soren's lunch with him to school every day. Monday morning a prepared avocado and salmon and put it in the fridge. When the bus came, I put the container in his lunchbox and sent him off.

When Soren came home, I had to give him a snack to get his antibiotic in. Before I got the food ready, every time I walked by Soren, he opened his mouth hoping for food. I thought this was odd since he had such a big lunch. So I fed him his snack, which he devoured.

That evening, I was preparing Soren's dinner and looked in the fridge for some squash I'd cooked. It was just a tiny bit of squash that I was going to mix up with some egg. But, for the life of me, I couldn't find it. But I DID find the avocado and salmon that I'd made that morning.

Poor little boy. I sent him to school with about 5 bites of squash for lunch. No wonder he was opening his mouth like a baby bird after school. He was starving!

Needless to say, he wolfed down his dinner really fast. But I felt so bad. Soren doesn't have any words to tell me he's hungry, but was giving me the only sign he knew--an open mouth--to clue me in. Good thing I had to give him his antibiotic!

Amy

UPDATE on EEG

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!

Amy

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!

Amy

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.

Amy

Happy 6th Birthday, Soren!

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

Hooray!

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!!!

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!

Thanks!

Amy

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.

Amy

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!

Amy

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.

Amy

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!

Amy

Depakote

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!

Amy

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.

Amy

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.

Amy