The GREAT news is that Soren has remained seizure-free all week!
After that, everything else is gravy. And the gravy has been pretty good as well. Part of the UCLA Intervention Program is that Soren is evaluated by a developmental pediatrian every six months. He had this 6 months ago and then had his second evaluation yesterday. What this means is that the doctor tries to see what progress Soren has made since the last visit. And I tend not to look at that kind of thing, so it was nice to have someone else put in in perspective.
Six months ago, Soren was still on Zonegran, and thus, still very drowsy at times. Now he is off it and MUCH more alert. Six months ago, Soren hadn't turned to his side. And while Soren still won't follow objects with his eyes or hold a toy in his grasp, there is one thing he does that ALWAYS impresses people.
He eats. He eats well. And he tends to sing and talk when he does it. And since we started feeding therapy (about 5 months ago), he is now taking bites of crackers, can drink thick liquids from a cup, and can negotiate a piece of food from one side of his mouth to the other (he prefers to chew on the right). These are skills he didn't have 6 months ago. And the doctor was HUGELY impressed.
It made me feel good. I forget that all these every day little things add up to a lot. Now we're working on him using a spoon (with our hand holding his hand) and him holding the cup (again, with assistance). I feel that if anything will motivate this boy to hold onto something, it's if it's food.
So, a good week. And over last week, I'll sure take it.
Amy
Friday, June 30, 2006
Monday, June 26, 2006
Good Monday
We had another seizure-free day! It was really wonderful.
Plus, Soren had a good day in general. After a week off from school, Soren went back to UCLA. They have a computer there with a very large button for Soren to press to activate the program. He was pressing the button with purpose, which is a positive change.
After school we went to visit Fyn in the hospital. He's looking good. Weary and sore, but good. Soren was being fussy, so we put him on Fyn's bed to stretch. Fyn said Soren smelled like frosting. I was confused by this until I realized that we put cocoa butter lotion on Soren every day. Fyn was right. Soren did smell like frosting.
Then Soren did a great job in Speech Therapy. His therapists are all finally figuring out what Soren is motivated by--food. We're getting him to stand for food (with support), look at pictures for food, and today we were working on the sign language sign for "more" with food.
Then this evening he was in a nasty, foul mood. I tried everything to settle him down. Snuggling, milk, but he wouldn't be consoled. It's funny, today at the hospital he was very fussy, wanting to get out of his stroller. But he wasn't crying. Fyn's mom Dayla asked if Soren ever really cried. And he usually doesn't. He doesn't get that emotional very often. But tonight he did. Just mad, red faced, tears, screaming and pissed off. And even though it was frustrating, it was good to see him just be fussy like a typical kid. Eventually he turned to his side and just passed out. Whatever was making him mad was over.
I'll keep you all up to speed on the seizures (or lack of them)!
Amy
Plus, Soren had a good day in general. After a week off from school, Soren went back to UCLA. They have a computer there with a very large button for Soren to press to activate the program. He was pressing the button with purpose, which is a positive change.
After school we went to visit Fyn in the hospital. He's looking good. Weary and sore, but good. Soren was being fussy, so we put him on Fyn's bed to stretch. Fyn said Soren smelled like frosting. I was confused by this until I realized that we put cocoa butter lotion on Soren every day. Fyn was right. Soren did smell like frosting.
Then Soren did a great job in Speech Therapy. His therapists are all finally figuring out what Soren is motivated by--food. We're getting him to stand for food (with support), look at pictures for food, and today we were working on the sign language sign for "more" with food.
Then this evening he was in a nasty, foul mood. I tried everything to settle him down. Snuggling, milk, but he wouldn't be consoled. It's funny, today at the hospital he was very fussy, wanting to get out of his stroller. But he wasn't crying. Fyn's mom Dayla asked if Soren ever really cried. And he usually doesn't. He doesn't get that emotional very often. But tonight he did. Just mad, red faced, tears, screaming and pissed off. And even though it was frustrating, it was good to see him just be fussy like a typical kid. Eventually he turned to his side and just passed out. Whatever was making him mad was over.
I'll keep you all up to speed on the seizures (or lack of them)!
Amy
Sunday, June 25, 2006
Dark Day, Getting Better
It's been a very stressful 5 days. As I wrote earlier, Soren had 2 seizures on Wednesday. I contacted his doctor and got the okay to increase the Lamictal by 5 mg for his evening dose.
Then Thursday Soren had 5 seizures. Tonic again. 30 seconds each. Spaced out by about 3 hours. He was post-ictal after each one, quite wiped out. Though, once he got through that, he bounced back to his usual chipper, kicking self. I think I was more wiped out than him, not bouncing back quite as well. Plus Aaron had to work that night. I ended up calling him and crying my eyes out. I thought I was better, but then my sister called and I balled again. Then my friend Sheri called, and it happened once more. Just when I'd finally finished, Aaron came home early, having gotten excused from work.
Friday Soren had 2 seizures, one in front of friends who had never witnessed one, so that was a bummer.
Yesterday we only saw 1 in the morning. Then last night we were at some friends' house and Soren was an absolute charmer--talking, kicking, turning to his side. My fear is him regressing developmentally, losing the gains he has made. So far that doesn't seem to have happened.
Today I haven't seen any. He was laughing and smiling while I fed him his avocado. Big green grins. Silly goose.
So now I continue to watch like a hawk. It's rather nerve-wracking. I don't like to have him out of my sight even though there's nothing I can do once the seizure starts. I just want him to know that I'm here for him. And it appears that the increase in the Lamictal is doing it's job. Cross your fingers.
Amy
Then Thursday Soren had 5 seizures. Tonic again. 30 seconds each. Spaced out by about 3 hours. He was post-ictal after each one, quite wiped out. Though, once he got through that, he bounced back to his usual chipper, kicking self. I think I was more wiped out than him, not bouncing back quite as well. Plus Aaron had to work that night. I ended up calling him and crying my eyes out. I thought I was better, but then my sister called and I balled again. Then my friend Sheri called, and it happened once more. Just when I'd finally finished, Aaron came home early, having gotten excused from work.
Friday Soren had 2 seizures, one in front of friends who had never witnessed one, so that was a bummer.
Yesterday we only saw 1 in the morning. Then last night we were at some friends' house and Soren was an absolute charmer--talking, kicking, turning to his side. My fear is him regressing developmentally, losing the gains he has made. So far that doesn't seem to have happened.
Today I haven't seen any. He was laughing and smiling while I fed him his avocado. Big green grins. Silly goose.
So now I continue to watch like a hawk. It's rather nerve-wracking. I don't like to have him out of my sight even though there's nothing I can do once the seizure starts. I just want him to know that I'm here for him. And it appears that the increase in the Lamictal is doing it's job. Cross your fingers.
Amy
Thursday, June 22, 2006
More Seizures
Soren had another seizure last night. He had it right before Aaron and I were about to go out. Since Soren hadn't had one in so long, it was the first time his babysitter ever saw one. Luckily we were there to make sure she knew what was going on. He was fine once it was done. He fell asleep as usual. I was, foolishly, hoping this would be the last we'd see.
But then he had another one during breakfast. Soren woke up really chipper, moving all about. He was eating great. And then he froze. I fished the food out of his mouth. He breathed through this one, though he still seemed to turn a little blue. Afterwards he conked out again. Now he has woken up and looks great.
It's hard. I need to be patient. We only increased his dosage last night. It will take a couple days to kick in, if it works. Hope with us that it does.
Amy
But then he had another one during breakfast. Soren woke up really chipper, moving all about. He was eating great. And then he froze. I fished the food out of his mouth. He breathed through this one, though he still seemed to turn a little blue. Afterwards he conked out again. Now he has woken up and looks great.
It's hard. I need to be patient. We only increased his dosage last night. It will take a couple days to kick in, if it works. Hope with us that it does.
Amy
Wednesday, June 21, 2006
Seizure and EEG Results
Soren had a seizure today. One that I actually witnessed. His teacher had mentioned last week that he had one, but unless I see it, I don't believe it. I am The Queen of Denial. But this one was undeniable. He looked like an archer drawing back his bow. One arm was straight, the other was bent. He had a fixed gaze. His heart was racing. And so was mine. This is a tonic seizure.
It's interesting how the second I see that, I get so very sad. It just breaks my heart. The thing is, it's probably just because Soren is a growing boy and has surpassed his current dosage of Lamictal. I called his neurologist and got the okay to increase his evening dose. We'll see how he does in three days or so. I trust that it will be fine. But still, the thought of going back to when he was seizing every day is too overwhelming to fathom.
In talking with his doctor, I also got Soren's EEG results from last week. Pretty much the same. He has a "spike wave on the right" which could indicate that he could be a surgical candidate in the future--but no guarantee. There was also a little bit of spiking on the left, but not as much. There was no sign of hypsarythmia, which is fantastic! That's 2 EEGs without that! And while last time he had background slowing, this time he only had "intermittent" background slowing. I'm hoping this is indicative of the development we've been seeing.
So, some bad, some good. Some frustration, some hope.
Amy
It's interesting how the second I see that, I get so very sad. It just breaks my heart. The thing is, it's probably just because Soren is a growing boy and has surpassed his current dosage of Lamictal. I called his neurologist and got the okay to increase his evening dose. We'll see how he does in three days or so. I trust that it will be fine. But still, the thought of going back to when he was seizing every day is too overwhelming to fathom.
In talking with his doctor, I also got Soren's EEG results from last week. Pretty much the same. He has a "spike wave on the right" which could indicate that he could be a surgical candidate in the future--but no guarantee. There was also a little bit of spiking on the left, but not as much. There was no sign of hypsarythmia, which is fantastic! That's 2 EEGs without that! And while last time he had background slowing, this time he only had "intermittent" background slowing. I'm hoping this is indicative of the development we've been seeing.
So, some bad, some good. Some frustration, some hope.
Amy
Tuesday, June 20, 2006
The Talbert Family Foundation
Now, while Soren does not have cancer, we found out about this foundation through an amazing little boy who does.
Previously I wrote about
Julie Talbert and I then found each other and Julie welcomed Soren in as a TFF Kid. What does this mean? This means that Soren can now receive TAX-DEDUCTIBLE DONATIONS through their foundation. And every dime of that donation goes to Soren. They don't take a cut. They don't scim off the top. They don't even take a little off the back end. Instead, they provide an option for people who may not have the time or energy to do the paperwork to set up a foundation. Yet, these kids and their families get the benefits of tax-deductible donations.
And as if that isn't generous enough, The Talbert Family Foundation is going to match the first $5,000 that we get donated! This totally blows me away. And this is through regular donations or tickets to "Dracula and the Beanstalk."
So, I want to thank Fyn, whose powerful battle led us to these people, Dayla for guiding them to Soren, Cindy for changing Soren's donation pages AGAIN to accomodate the change, Julie Talbert, her family, and the entire The Talbert Family Foundation for welcoming our little boy as a TFF Kid.
Amy
Wednesday, June 14, 2006
EEG Tomorrow, Comedy Tonight!
Yes, Soren is scheduled for an EEG tomorrow. His last EEG was in November. It showed some positive and negatives. The positive was that he no longer had hypsarythmia, the tell-tale indicator for Infantile Spasms. Now, this either means that Soren's meds (the Lamictal and Zonegran at that time) had stifled the hypsarythmia. Or he had outgrown the Infantile Spasms, which, indicative in the name, can happen. The problem then is that, if the seizures are not under control, the child just segues into another form of seizure disorder.
The negative was that Soren had (as I recall) "spike-wave tendencies" which means that he was prone to seizures. Which we kinda knew. But, still, it was on the EEG, which meant we were not out of the woods. Not that we thought we were. This was just a harsh reminder in concrete medical testing.
Oh, it also showed that Soren had a "slow background." Meaning that he was developing slowly. Something we also knew. But nothing like reality biting you in the ass as a reminder.
So now that he's been seizure-free for over a year and only on one AED, we (Aaron, me, and Soren's neurologist) felt it was time to see what was going on in that brain of Soren's.
Now for the COMEDY portion of the evening. In EEGs past, my biggest challenge was not feeding Soren in the morning so that he could get a "sleepy" medicine on an empty stomach. See, one of the goals in doing an EEG is to have the patient awake for one portion and asleep for another. Brain waves act differently depending if you are awake or asleep. And many seizures are activated (or aggravated) during transitions in sleep. Infantile Spasms are known for this. So, in tests past, Soren was allowed a full night's sleep, just no food in the morning. Then he was given medicine which would make him sleep part-way through the test.
BUT TOMORROW'S TEST IS DIFFERENT. For some reason, there is no sleepy medicine. Instead, I'm supposed to only allow Soren 4 HOURS SLEEP!!!! Okay, for any of you who know Soren, you realize what a joke this is. For those of you who don't, let me fill you in. Soren could be in a freakin' war zone and, if he wanted to sleep, he'd f'in' sleep. He's slept at parties. He's slept while eating. He purposely sleeps during therapies as a defense mechanism.
And, of course, he's been about as animated and goofy today as possible, taking no naps whatsoever. Soren has NEVER had a set nap schedule. After all, he's been on drugs most of his life that FORCE him to sleep. But today, for whatever reason, he has been laughing his ass off. He's been ticklish, cute, responsive. It's actually been quite a lovely day. But now, go figure, he's a little tired. I put the kids to bed, and he was laughing again, so I took him out so Mo could sleep. He giggled and wiggled for a while. But, as I've been writing this, he has dropped off. I've gone over twice to shake him awake. And he is out again. I'm not worrying too much because he's prone to cat naps and will hopefully wake up in about 20 minutes.
But still, 4 hours! That means that Aaron and I get 4 hours. Then I'm supposed to drive to UCLA? Good thing it'll be 7 am when the roads are clear. Just note, L.A. drivers, I'll be on the road in the morning with 4 hours sleep, so watch out! And then they've actually asked me to keep Soren awake DURING THE DRIVE. HAH! I know parents who purposely put their strung-out kids in the car and drive them around to put them to sleep. Driving in the car is the universal tranquilizer. But still, tomorrow Soren's caregiver will be in the car to poke at him during the drive, as if that is going to help "the child who will not be woken."
And, to be honest, I'm a little nervous about what the test will show. Soren's teacher at UCLA said she saw a seizure on Monday. Her description fit the bill. But I've seen nothing since then. And, like I said, he's been nothing but hilarious. So we'll see. Cross your fingers for us that it was just a freak thing.
All I know is that a repeat of "Lost," my TiVo'ed "Queer Eye," and my Netflixed Jackie Chan "The Tuxedo" are waiting for me to keep me up until the wee hours. And then there's the 4 am walk Soren and I will be going on. If you live in my neighborhood, watch out for the crazy lady with the stroller walking in the dark trying to keep her kid awake.
Oh, and Soren just woke up from his cat-nap. That's 20 minutes of his 4 hours. He's only allowed 3 hours and 40 minutes now. I better keep a tally.
Amy
The negative was that Soren had (as I recall) "spike-wave tendencies" which means that he was prone to seizures. Which we kinda knew. But, still, it was on the EEG, which meant we were not out of the woods. Not that we thought we were. This was just a harsh reminder in concrete medical testing.
Oh, it also showed that Soren had a "slow background." Meaning that he was developing slowly. Something we also knew. But nothing like reality biting you in the ass as a reminder.
So now that he's been seizure-free for over a year and only on one AED, we (Aaron, me, and Soren's neurologist) felt it was time to see what was going on in that brain of Soren's.
Now for the COMEDY portion of the evening. In EEGs past, my biggest challenge was not feeding Soren in the morning so that he could get a "sleepy" medicine on an empty stomach. See, one of the goals in doing an EEG is to have the patient awake for one portion and asleep for another. Brain waves act differently depending if you are awake or asleep. And many seizures are activated (or aggravated) during transitions in sleep. Infantile Spasms are known for this. So, in tests past, Soren was allowed a full night's sleep, just no food in the morning. Then he was given medicine which would make him sleep part-way through the test.
BUT TOMORROW'S TEST IS DIFFERENT. For some reason, there is no sleepy medicine. Instead, I'm supposed to only allow Soren 4 HOURS SLEEP!!!! Okay, for any of you who know Soren, you realize what a joke this is. For those of you who don't, let me fill you in. Soren could be in a freakin' war zone and, if he wanted to sleep, he'd f'in' sleep. He's slept at parties. He's slept while eating. He purposely sleeps during therapies as a defense mechanism.
And, of course, he's been about as animated and goofy today as possible, taking no naps whatsoever. Soren has NEVER had a set nap schedule. After all, he's been on drugs most of his life that FORCE him to sleep. But today, for whatever reason, he has been laughing his ass off. He's been ticklish, cute, responsive. It's actually been quite a lovely day. But now, go figure, he's a little tired. I put the kids to bed, and he was laughing again, so I took him out so Mo could sleep. He giggled and wiggled for a while. But, as I've been writing this, he has dropped off. I've gone over twice to shake him awake. And he is out again. I'm not worrying too much because he's prone to cat naps and will hopefully wake up in about 20 minutes.
But still, 4 hours! That means that Aaron and I get 4 hours. Then I'm supposed to drive to UCLA? Good thing it'll be 7 am when the roads are clear. Just note, L.A. drivers, I'll be on the road in the morning with 4 hours sleep, so watch out! And then they've actually asked me to keep Soren awake DURING THE DRIVE. HAH! I know parents who purposely put their strung-out kids in the car and drive them around to put them to sleep. Driving in the car is the universal tranquilizer. But still, tomorrow Soren's caregiver will be in the car to poke at him during the drive, as if that is going to help "the child who will not be woken."
And, to be honest, I'm a little nervous about what the test will show. Soren's teacher at UCLA said she saw a seizure on Monday. Her description fit the bill. But I've seen nothing since then. And, like I said, he's been nothing but hilarious. So we'll see. Cross your fingers for us that it was just a freak thing.
All I know is that a repeat of "Lost," my TiVo'ed "Queer Eye," and my Netflixed Jackie Chan "The Tuxedo" are waiting for me to keep me up until the wee hours. And then there's the 4 am walk Soren and I will be going on. If you live in my neighborhood, watch out for the crazy lady with the stroller walking in the dark trying to keep her kid awake.
Oh, and Soren just woke up from his cat-nap. That's 20 minutes of his 4 hours. He's only allowed 3 hours and 40 minutes now. I better keep a tally.
Amy
Friday, June 09, 2006
Ahead with Horses Fun Day!
Hello All,
I should have posted this a LONG time ago. BUT, if you aren't doing anything Sunday and feel like driving to Sun Valley to see some kids on horses, come to theAhead with Horses Fun Day The address is 9311 DEL ARROYO DRIVE, SUN VALLEY, CALIFORNIA 91352. You'll have to park down at the school and then bus up because of the number of people that come. But it's going to be a blast!
Let me tell you about Ahead with Horses, which has a link on the right sidebar. They are an AMAZING organization. Soren rides a horse once a week at Ahead with Horses. It's a form of physical therapy. The theory is that, for children like Soren that don't walk, getting the horses movement into their body helps them connect with that movement. Then, for more able bodied kids, it helps them with balance. I've seen kids standing on the horses doing "tricks." It's really cool.
Ahead with Horses helps kids with varying disabilities--kids like Soren, kids with CP, kids with ADHD. They run the gammut.
So, if you want to come to the Fun Day on Sunday, it starts at 11:00. Soren will be in a presentation where he rides a horse at 1:00. There's food, games, and general merriment. I have FREE tickets if you want them. If you want to pay at the door, it's $12 for adults and $6 for kids.
If you just want to donate to this amazing organization (I know, all I do is ask for money), clickhere
I'll post pictures of Soren's ride!
Amy
I should have posted this a LONG time ago. BUT, if you aren't doing anything Sunday and feel like driving to Sun Valley to see some kids on horses, come to the
Let me tell you about Ahead with Horses, which has a link on the right sidebar. They are an AMAZING organization. Soren rides a horse once a week at Ahead with Horses. It's a form of physical therapy. The theory is that, for children like Soren that don't walk, getting the horses movement into their body helps them connect with that movement. Then, for more able bodied kids, it helps them with balance. I've seen kids standing on the horses doing "tricks." It's really cool.
Ahead with Horses helps kids with varying disabilities--kids like Soren, kids with CP, kids with ADHD. They run the gammut.
So, if you want to come to the Fun Day on Sunday, it starts at 11:00. Soren will be in a presentation where he rides a horse at 1:00. There's food, games, and general merriment. I have FREE tickets if you want them. If you want to pay at the door, it's $12 for adults and $6 for kids.
If you just want to donate to this amazing organization (I know, all I do is ask for money), click
I'll post pictures of Soren's ride!
Amy
Saturday, June 03, 2006
People Helping People
Are the luckiest people in the world. And most often, this is merely through words. I have sent Soren's message out to many, many people. To my family. To my closest friends. To friends I have not spoken to in 15 to 20 years. Yet all I hear is kindness. And those words of kindness help me get through the day.
We have a tradition at our house of Friday Pizza and Movie Night. It originated from my not wanting to cook on Friday. And pizza being Moira's favorite food. Then we added wanting to see friends and the ease of having pizza. When kids come over, they eat pizza and watch a movie. The grown-ups eat pizza and catch-up. So we've had some friends over, some delicious pizza, some fun movies, and some great conversation.
This Friday, we were treated to Friday Pizza and Movie Night at our friends the Savinos. Delicious pizza. Wonderful conversation. And while Moira played with Chris and Beth's lovely boys, Vinnie and Nicky, Chris and Beth got to witness Soren's amazing progress. This helped Aaron and I see how far Soren had come.
And then there have been my friends from college (Oxy) and high school (Chaminade). On this coming Saturday, I will be having my 15th college reunion. Aaron and I are having an Oxy Theater Reunion at our house, so people are finding out about our travails with Soren. I have gotten such wonderful words of encouragement, it's amazing.
I also wanted to inform my high school classmates about Soren's condition as well. I think people should be honest and up front about the struggles in their lives. Afterall, most people have them. And I have gotten such wonderful emails from people. People that I haven't spoken to in years. People that are also struggling with their own, life-altering issues. I want to thank them for writing to me to give me encouragement. And I hope, in return, I have given them encouragement as well. Because, in the end, that's what it's all about.
It's about helping people. Through our words. Through our kindness. Those things can take people through to the next day. They can give others hope when they feel hopeless, which I know, I so often do. But the words help. So I thank you all for them. For the words. They really make a difference. So...
Thank you,
Amy
We have a tradition at our house of Friday Pizza and Movie Night. It originated from my not wanting to cook on Friday. And pizza being Moira's favorite food. Then we added wanting to see friends and the ease of having pizza. When kids come over, they eat pizza and watch a movie. The grown-ups eat pizza and catch-up. So we've had some friends over, some delicious pizza, some fun movies, and some great conversation.
This Friday, we were treated to Friday Pizza and Movie Night at our friends the Savinos. Delicious pizza. Wonderful conversation. And while Moira played with Chris and Beth's lovely boys, Vinnie and Nicky, Chris and Beth got to witness Soren's amazing progress. This helped Aaron and I see how far Soren had come.
And then there have been my friends from college (Oxy) and high school (Chaminade). On this coming Saturday, I will be having my 15th college reunion. Aaron and I are having an Oxy Theater Reunion at our house, so people are finding out about our travails with Soren. I have gotten such wonderful words of encouragement, it's amazing.
I also wanted to inform my high school classmates about Soren's condition as well. I think people should be honest and up front about the struggles in their lives. Afterall, most people have them. And I have gotten such wonderful emails from people. People that I haven't spoken to in years. People that are also struggling with their own, life-altering issues. I want to thank them for writing to me to give me encouragement. And I hope, in return, I have given them encouragement as well. Because, in the end, that's what it's all about.
It's about helping people. Through our words. Through our kindness. Those things can take people through to the next day. They can give others hope when they feel hopeless, which I know, I so often do. But the words help. So I thank you all for them. For the words. They really make a difference. So...
Thank you,
Amy
Tuesday, May 30, 2006
The Amazing Camille
As I wrote earlier, back when we were being evaluated on how to treat Soren's Infantile Spasms, Soren was admitted into UCLA for observation. Here he met a beautiful little girl only a few weeks younger than him named Camille who was, unfortunately, further along in her journey with Epilepsy. Along with Camille, we met her fantastic parents, Julie and Steve. Again, in a previous blog, I fully admitted to cheating off Julie's paper, taking all that she'd learned about Epilepsy and applying what I could to Soren. And, to be perfectly honest, one of the reasons it took me so long to ask for help was because, seeing what Camille has gone through so far in her short life, I felt that, in comparison, we didn't have room to complain.
Camille has many elements to her diagnosis. Besides Infantile Spasms, she has been diagnosed with Cerebral Palsey, Cortical Visual Impairment, she has a feeding tube that has caused her many issues and prolonged hospital stays, she has a Dysphagia, which is a swallowing disorder, Gastroesophageal Reflux Disease, and Immunodeficieny. It appears that it is Camille's Immunodeficiency that is causing her Epilepsy. Currently, Camille receives monthly infusions of IVIg (Intravenous Immunoglobulins) to treat her Immunodeficiency (Hypogammaglobulinemia) and to control her seizures. The great news is that Camille has achieved seizure control with high dose IVIg treatment.
Like Soren, Camille's Infantile Spasms have caused global developmental delay. So she also does a full spectrum of therapies to build her strength and further her development. And I must say, she is one of the most amazing kids I've met. Despite many hospital stays and over 1000 seizures at her worst, Camille continues to get stronger and more interactive. Camille gives me lots of hope with her strength and willpower.
Please check outCamille's Website which, because Julie put it together, is CHOCK FULL of information on Epilepsy, Treatments, and a sobering video that really helps educate how devastating intractable seizures are.
Amy
Camille has many elements to her diagnosis. Besides Infantile Spasms, she has been diagnosed with Cerebral Palsey, Cortical Visual Impairment, she has a feeding tube that has caused her many issues and prolonged hospital stays, she has a Dysphagia, which is a swallowing disorder, Gastroesophageal Reflux Disease, and Immunodeficieny. It appears that it is Camille's Immunodeficiency that is causing her Epilepsy. Currently, Camille receives monthly infusions of IVIg (Intravenous Immunoglobulins) to treat her Immunodeficiency (Hypogammaglobulinemia) and to control her seizures. The great news is that Camille has achieved seizure control with high dose IVIg treatment.
Like Soren, Camille's Infantile Spasms have caused global developmental delay. So she also does a full spectrum of therapies to build her strength and further her development. And I must say, she is one of the most amazing kids I've met. Despite many hospital stays and over 1000 seizures at her worst, Camille continues to get stronger and more interactive. Camille gives me lots of hope with her strength and willpower.
Please check out
Amy
Monday, May 22, 2006
The Sith Witch
After Soren's first stem cell injection in January of '05, he was still in a rather bad place. He was on two AEDs which were not stopping the seizures and had the side effects of being appetite suppressants, so he wasn't eating well and was losing weight. Now, this was rather tricky. As you could see from the pictures in earlier posts, Soren had A LOT of weight to lose after the Summer of Steroids. Once we stopped the steroids, Soren slowed down his eating and was feeding off his own fat. But then, on these two drugs, he was just shutting down. Before our first stem cell injection, we went to the neurologist and got him checked out and weighed in. Two weeks after the injection, we returned to the neurologist. Soren had LOST about 5 pounds. That's NOT what kids his age do. So, though we wanted to have a somewhat controlled experiment as far as the stem cells went, we just couldn't. We had to get him off one of these drugs. So we started weaning him off Topomax (or Dopomax, as the moms call it) to make sure he didn't keep losing weight. Still, in order to get enough calories in him, he had to drink Pediasure three times a day.
As for the stem cells, while we saw some progress, we knew we needed to keep trying alternative options while we were waiting for them to take full effect, if we were lucky enough for them to have any effect at all.
So we went to an osteopath. Now, let me say up front that I have nothing against osteopaths. I don't want osteopathic hate mail here, for Pete's sake. I wouldn't go taking my son to someone who I thought would harm him. That being said, we dubbed this osteopath the Sith Witch for a reason. While she was the size, shape, and age of Yoda, she had the bedside manner of the Emperor. She was pure evil.
Now, I know some of my fellow parents who have taken their children to her may feel I am gilding the lily. But, I speak from my experience, and there is no lily gilding going on here. First of all, anybody who goes to her is DESPERATE, just like we were. You have to make an appointment, which, because there are so many sick kids with so many desperate parents, is MONTHS in advance. Then, IF she accepts to take your child, you have to go weekly for about 6 weeks. So you set up those appointments as well, just in case you're "lucky" and she accepts your kid.
Then you have to get there. I know people who have traveled across the country to see this woman. For us, it was merely a trip heading south. I will say no more as to her exact location and personage for fear of defamation of character or the Sith Witch cursing me in my sleep.
We made our appointments. We took Moira out of preschool since it was going to be an all day excursion. And we all piled into the car for the journey. When we arrived, I was taken into a room--ALONE. And there I was quizzed by the Sith Witch. Now, as the mother of Soren, the person who carried him inside her for 9 months, I had gotten used to being asked questions about my pregnancy with this now debilitated child. I didn't like it, but I was used to it. How did the pregnancy go? Did anything unusual happen? Did I take folic acid? Did I drink? Do drugs? Smoke? Blah, blah, blah. No, no, no. Normal pregnancy. Get off my back!
But the Sith Witch had a way of asking this questions that put such blame on me it was horrid. When she found out that I had Soren by scheduled C-section, it was as if I had taken the knife and cut him out myself. Doctors often ask about the birth because there could have been birth trauma that caused the seizures. Well, since he had no birth trauma, this isn't the answer. But the Sith Witch couldn't just leave it at that. "You mean you never went into labor?" she asked horrified. Um, no, I didn't. I went through enough freakin' labor with the first kid who was then born by EMERGENCY C-section. Talk about trauma. I wasn't going to go through that again!
Then I told her that I had experienced some Braxton-Hicks contractions weeks prior to Soren's birth. "How did you know it wasn't actual labor?" Excuse me? Because I've been in actual labor, bitch, and this wasn't it! In actual labor, I feel like my eyes are going to come out of my ass. I think I know the difference.
Next was breast-feeding. Now Soren never caught on to breast-feeding. I tried for 3 weeks. I had to go back to work after 6 weeks. So after 3, I admit it, I gave up. So while he didn't get the benefits of sucking on mama's teat, I pumped milk for 6 months from those engorged babies, so Soren got plenty of the good stuff and my boobs have paid the price. But did the Sith Witch appreciate this? Did she realized I'd sacrificed all I could for my child? No, I was clearly a horrid mother who did not try hard enough to nurse my child. But again, THAT was NOT the cause of his seizures. I know kids who nursed 'til the cows came home, but still had seizures. So lay off!
And it continued with my being horrible for feeding him baby food from a jar (while I admitted I did as much fresh as I could and the jar was not the norm) to her saying that I was having him do too many therapies all once.
After grilling me within an inch of my life, she then took Soren into a room on his own. Alone. Aaron and I were not allowed in. This is how she did her assessment and how, if he was deemed worthy, she would do her "sessions." For all we know, she was smokin' crack and playing solitaire. While the Sith Witch assessed Soren, I told Aaron, trying not to break down, that I hated the thought of returning to this place after what she put me through. But I would do it for Soren. After her private time with Soren, she spoke to Aaron and me together (the kids were being watched by an assistant). She said that she would take this case on. However, she was concerned with the lack of fresh food (whatever).
In the end, we smiled and shook hands, paid our money, piled back into our mini van, and got as far from the Sith Witch as quickly as we possibly could. Again, I told Aaron that if we had to do this, I would be strong and do it. The drive, the humilation and accusations. If it helped Soren, I would do it. But as I drove, Aaron made the executive decision that the Sith Witch was not going to help our son. He called on his mobile phone, canceling all our future appointments.
We've all heard of the Wicked Witches of the East and the West. And good Glinda of the North. But we've never heard of the witch that resided in the South. Well, I've met her. The Sith Witch of the South lives. I do hope someone drops a house on her very soon.
Amy
As for the stem cells, while we saw some progress, we knew we needed to keep trying alternative options while we were waiting for them to take full effect, if we were lucky enough for them to have any effect at all.
So we went to an osteopath. Now, let me say up front that I have nothing against osteopaths. I don't want osteopathic hate mail here, for Pete's sake. I wouldn't go taking my son to someone who I thought would harm him. That being said, we dubbed this osteopath the Sith Witch for a reason. While she was the size, shape, and age of Yoda, she had the bedside manner of the Emperor. She was pure evil.
Now, I know some of my fellow parents who have taken their children to her may feel I am gilding the lily. But, I speak from my experience, and there is no lily gilding going on here. First of all, anybody who goes to her is DESPERATE, just like we were. You have to make an appointment, which, because there are so many sick kids with so many desperate parents, is MONTHS in advance. Then, IF she accepts to take your child, you have to go weekly for about 6 weeks. So you set up those appointments as well, just in case you're "lucky" and she accepts your kid.
Then you have to get there. I know people who have traveled across the country to see this woman. For us, it was merely a trip heading south. I will say no more as to her exact location and personage for fear of defamation of character or the Sith Witch cursing me in my sleep.
We made our appointments. We took Moira out of preschool since it was going to be an all day excursion. And we all piled into the car for the journey. When we arrived, I was taken into a room--ALONE. And there I was quizzed by the Sith Witch. Now, as the mother of Soren, the person who carried him inside her for 9 months, I had gotten used to being asked questions about my pregnancy with this now debilitated child. I didn't like it, but I was used to it. How did the pregnancy go? Did anything unusual happen? Did I take folic acid? Did I drink? Do drugs? Smoke? Blah, blah, blah. No, no, no. Normal pregnancy. Get off my back!
But the Sith Witch had a way of asking this questions that put such blame on me it was horrid. When she found out that I had Soren by scheduled C-section, it was as if I had taken the knife and cut him out myself. Doctors often ask about the birth because there could have been birth trauma that caused the seizures. Well, since he had no birth trauma, this isn't the answer. But the Sith Witch couldn't just leave it at that. "You mean you never went into labor?" she asked horrified. Um, no, I didn't. I went through enough freakin' labor with the first kid who was then born by EMERGENCY C-section. Talk about trauma. I wasn't going to go through that again!
Then I told her that I had experienced some Braxton-Hicks contractions weeks prior to Soren's birth. "How did you know it wasn't actual labor?" Excuse me? Because I've been in actual labor, bitch, and this wasn't it! In actual labor, I feel like my eyes are going to come out of my ass. I think I know the difference.
Next was breast-feeding. Now Soren never caught on to breast-feeding. I tried for 3 weeks. I had to go back to work after 6 weeks. So after 3, I admit it, I gave up. So while he didn't get the benefits of sucking on mama's teat, I pumped milk for 6 months from those engorged babies, so Soren got plenty of the good stuff and my boobs have paid the price. But did the Sith Witch appreciate this? Did she realized I'd sacrificed all I could for my child? No, I was clearly a horrid mother who did not try hard enough to nurse my child. But again, THAT was NOT the cause of his seizures. I know kids who nursed 'til the cows came home, but still had seizures. So lay off!
And it continued with my being horrible for feeding him baby food from a jar (while I admitted I did as much fresh as I could and the jar was not the norm) to her saying that I was having him do too many therapies all once.
After grilling me within an inch of my life, she then took Soren into a room on his own. Alone. Aaron and I were not allowed in. This is how she did her assessment and how, if he was deemed worthy, she would do her "sessions." For all we know, she was smokin' crack and playing solitaire. While the Sith Witch assessed Soren, I told Aaron, trying not to break down, that I hated the thought of returning to this place after what she put me through. But I would do it for Soren. After her private time with Soren, she spoke to Aaron and me together (the kids were being watched by an assistant). She said that she would take this case on. However, she was concerned with the lack of fresh food (whatever).
In the end, we smiled and shook hands, paid our money, piled back into our mini van, and got as far from the Sith Witch as quickly as we possibly could. Again, I told Aaron that if we had to do this, I would be strong and do it. The drive, the humilation and accusations. If it helped Soren, I would do it. But as I drove, Aaron made the executive decision that the Sith Witch was not going to help our son. He called on his mobile phone, canceling all our future appointments.
We've all heard of the Wicked Witches of the East and the West. And good Glinda of the North. But we've never heard of the witch that resided in the South. Well, I've met her. The Sith Witch of the South lives. I do hope someone drops a house on her very soon.
Amy
Wednesday, May 17, 2006
Soren Turned onto his RIGHT Side!
It's true!
Two weeks ago, when Soren started turning to his side, he was always turning to the left. As many of you know, babies tend to pick a favorite side to roll to before moving on to the other side. And turning left made sense for Soren because he used to seize contracting the muscles on his left side. Soren's therapists would ask me at each session if he was still only rolling to the left.
So he was on the floor today, exercising, turning left, sometimes getting to his belly and getting stuck. I had just rolled him back onto his back. He was kicking and squiggling about. I sat down to work and he was suddenly on his RIGHT SIDE!!!!
Again, I was so stunned, I didn't grab the camera (I've got to get better at this). Instead I grabbed the phone to call Aaron. Then, while talking to Aaron, Soren got annoyed with being on the right and rolled back to his back. Still, he was there. Even if it was for about a minute. He rolled to the right and he got there all on his own!
So things are changing. Soren's getting stronger. And I will have my camera ready the next time he does it. Promise!
Amy
Two weeks ago, when Soren started turning to his side, he was always turning to the left. As many of you know, babies tend to pick a favorite side to roll to before moving on to the other side. And turning left made sense for Soren because he used to seize contracting the muscles on his left side. Soren's therapists would ask me at each session if he was still only rolling to the left.
So he was on the floor today, exercising, turning left, sometimes getting to his belly and getting stuck. I had just rolled him back onto his back. He was kicking and squiggling about. I sat down to work and he was suddenly on his RIGHT SIDE!!!!
Again, I was so stunned, I didn't grab the camera (I've got to get better at this). Instead I grabbed the phone to call Aaron. Then, while talking to Aaron, Soren got annoyed with being on the right and rolled back to his back. Still, he was there. Even if it was for about a minute. He rolled to the right and he got there all on his own!
So things are changing. Soren's getting stronger. And I will have my camera ready the next time he does it. Promise!
Amy
Tuesday, May 16, 2006
Soren's Mother's Day Gift
I have to say, I was rather lucky on Mother's Day. Moira made me a beautiful hand-painted, flower-shaped coaster. Soren gave me a personally decorated frame with a photo of the two of us. And my husband got me a MUCH NEEDED massage. We've had the same masseur for years and he noted that he's never felt my back so tense. Yeah, no kidding!
But, the best Mother's Day gift was the extra one I got from Soren. As of that day, Soren was seizure-free of Infantile Spasms and tonic-clonic seizures for a YEAR!!!!! Wahoo!
And, on a side note, he has been busy turning back and forth to his side every day like a pro. When he first started 2 weeks ago, to get his arm over to his side, he had to use brute force. Now he can bring it to and fro without any effort.
Here's to being seizure-free! Happy Mother's Day!
Amy
But, the best Mother's Day gift was the extra one I got from Soren. As of that day, Soren was seizure-free of Infantile Spasms and tonic-clonic seizures for a YEAR!!!!! Wahoo!
And, on a side note, he has been busy turning back and forth to his side every day like a pro. When he first started 2 weeks ago, to get his arm over to his side, he had to use brute force. Now he can bring it to and fro without any effort.
Here's to being seizure-free! Happy Mother's Day!
Amy
Friday, May 12, 2006
Stem Cells: The Good, the Bad, and the Hopeful
People often ask me about the stem cells and why we have to go to the Dominican Republic. And I feel that, since we're asking for donations, I should tell you all I know--the good, the bad, and the hopeful.
First of all, why the DR? Simple, because we can't do it in the US. The FDA needs to do testing before stem cells are approved in our country. And such testing is barely being allowed because of the political landscape of our country. If the FDA is ever allowed to do complete testing, by the time it was all approved, it would really be too late for Soren. Due to his developmental delay, we feel we need to do as much as we can as soon as we can. We can't wait until he's 20!
So the choices for getting stem cells are out of the country. Mexico does some injections, but the stem cells there are fetal stem cells, not embryonic stem cells. I think there are places in the Ukraine that do embryonic stem cell injections--but that's even further! So, the DR it is.
What's the difference between embryonic and fetal stem cells? Embryonic stem cells are harvested in Eastern Europe from aborted embryos that are between 8-12 weeks old. At this stage, it is believed that the stem cells are pluripotent. This means that at this point of development, they can become anything. This is where doctors in the US are worried. Their fear is that if the stem cells can become anything, why can't they become cancer? Not to be cavalier, but for us, cancer is the least of our worries. We'd like our son to walk and talk some day. Fetal stem cells are further along in the process developmentally, so the thought is that they have less potential to fix the body. That's why we go for embryonic stem cells.
Why Eastern Europe? Well, abortion is a common and accepted form of birth control there. The women are approached, from what I recall, when coming in for a 2nd abortion. They are asked if they would like to donate the embryo. If they say yes, testing is done on the woman for Hepatitis B and HIV. The stem cells themselves then undergo further testing to make sure they are not contaminated.
How do they work? Theoretically, the stem cells get into the body, find the problem, multiply, and fix it.
How are they given? Soren is given two injections: one intravenously (in a vein) and one subcutaneously (in the muscle). Another good thing about stem cells is that you don't have to find a match, as with bone marrow transplants. With stem cells, one size fits all.
But more controversy crops up regarding how the stem cells are administered. Doctors in the US don't think that the stem cells can cross the blood brain barrier to the brain. Thus, for brain problems, they feel that the stem cells would have to be injected into the spinal column in order to make it to the brain. But I know plenty of people who disagree. Me, obviously, for one. And I have met many people in the DR getting injections for themselves or their kids who disagree. And if you met Clayton, the boy I wrote about before, you would disagree too.
Who does them? It's all arranged by a Los Angeles-based doctor named Dr. William Rader. Now, I'll be honest, if you do a web search on Dr. Rader, you'll find rather disparaging things. He's on quackwatch.com. He's had articles written against him in various newspapers. Believe me, we've heard and read it all.
But, more importantly, we've witnessed Clayton first hand. And when you have that, all the disparaging remarks disappear and Dr. Rader becomes your shining beacon. Yes, in many ways, it's a leap of faith. But we feel that this leap has paid off and, with subsequent injections, will continue to do so.
Why so much money? Yes, the first injection was $25,000. Each subsequent one is $8,500. That in itself is a lot of money. Add in travel and lodging, and you have an expensive medical trip. One reason, I think for the high price is the screening process. You want clean stem cells and doing that, running the facility, costs money. Second, think of what your medical procedures would cost if you didn't have insurance. It would be a pretty penny, that's for sure. Until it's legal in the US and paid for by insurance, this is the cost for our possible cure.
Now, if you want to read the good, go to Dr. Rader's sight atMedra for Stem Cell Therapy And go to their home page to watch Clayton's Documentary to learn about Soren's friend Clayton who has done so REMARKABLY because of stem cell injections.
And, in all fairness, if you want to read about the bad, go to quackwatch.org for aNegative Stem Cell Report
But whatever you glean from this information, know that for us, stem cells, like Obi-Wan, are our only hope. That is why we are going back in December and, with your help, again next May or June. We feel that the stem cells are, indeed, mending the problems in Soren's brain. And with the seizures stopped, we are hopeful for Soren's progress.
Thank you for all your support!
Amy
First of all, why the DR? Simple, because we can't do it in the US. The FDA needs to do testing before stem cells are approved in our country. And such testing is barely being allowed because of the political landscape of our country. If the FDA is ever allowed to do complete testing, by the time it was all approved, it would really be too late for Soren. Due to his developmental delay, we feel we need to do as much as we can as soon as we can. We can't wait until he's 20!
So the choices for getting stem cells are out of the country. Mexico does some injections, but the stem cells there are fetal stem cells, not embryonic stem cells. I think there are places in the Ukraine that do embryonic stem cell injections--but that's even further! So, the DR it is.
What's the difference between embryonic and fetal stem cells? Embryonic stem cells are harvested in Eastern Europe from aborted embryos that are between 8-12 weeks old. At this stage, it is believed that the stem cells are pluripotent. This means that at this point of development, they can become anything. This is where doctors in the US are worried. Their fear is that if the stem cells can become anything, why can't they become cancer? Not to be cavalier, but for us, cancer is the least of our worries. We'd like our son to walk and talk some day. Fetal stem cells are further along in the process developmentally, so the thought is that they have less potential to fix the body. That's why we go for embryonic stem cells.
Why Eastern Europe? Well, abortion is a common and accepted form of birth control there. The women are approached, from what I recall, when coming in for a 2nd abortion. They are asked if they would like to donate the embryo. If they say yes, testing is done on the woman for Hepatitis B and HIV. The stem cells themselves then undergo further testing to make sure they are not contaminated.
How do they work? Theoretically, the stem cells get into the body, find the problem, multiply, and fix it.
How are they given? Soren is given two injections: one intravenously (in a vein) and one subcutaneously (in the muscle). Another good thing about stem cells is that you don't have to find a match, as with bone marrow transplants. With stem cells, one size fits all.
But more controversy crops up regarding how the stem cells are administered. Doctors in the US don't think that the stem cells can cross the blood brain barrier to the brain. Thus, for brain problems, they feel that the stem cells would have to be injected into the spinal column in order to make it to the brain. But I know plenty of people who disagree. Me, obviously, for one. And I have met many people in the DR getting injections for themselves or their kids who disagree. And if you met Clayton, the boy I wrote about before, you would disagree too.
Who does them? It's all arranged by a Los Angeles-based doctor named Dr. William Rader. Now, I'll be honest, if you do a web search on Dr. Rader, you'll find rather disparaging things. He's on quackwatch.com. He's had articles written against him in various newspapers. Believe me, we've heard and read it all.
But, more importantly, we've witnessed Clayton first hand. And when you have that, all the disparaging remarks disappear and Dr. Rader becomes your shining beacon. Yes, in many ways, it's a leap of faith. But we feel that this leap has paid off and, with subsequent injections, will continue to do so.
Why so much money? Yes, the first injection was $25,000. Each subsequent one is $8,500. That in itself is a lot of money. Add in travel and lodging, and you have an expensive medical trip. One reason, I think for the high price is the screening process. You want clean stem cells and doing that, running the facility, costs money. Second, think of what your medical procedures would cost if you didn't have insurance. It would be a pretty penny, that's for sure. Until it's legal in the US and paid for by insurance, this is the cost for our possible cure.
Now, if you want to read the good, go to Dr. Rader's sight at
And, in all fairness, if you want to read about the bad, go to quackwatch.org for a
But whatever you glean from this information, know that for us, stem cells, like Obi-Wan, are our only hope. That is why we are going back in December and, with your help, again next May or June. We feel that the stem cells are, indeed, mending the problems in Soren's brain. And with the seizures stopped, we are hopeful for Soren's progress.
Thank you for all your support!
Amy
Tuesday, May 09, 2006
Stem Cells: Meeting Clayton
After the summer of steroids, we tried various other AEDs to no avail. Soren was seizing like crazy. He was holding his breath and turning blue. We had an oxygen tank on hand during his seizures. We were in a very, very bad place.
Then my friend Julie told me about another mom whose son had gotten stem cell injections and the injection had been their miracle. I contacted this mom, Azita, and learned all about Clayton.
Unlike Soren, after Clayton was born, he was developing normally, hitting all his milestones. He was doing really, really well and his parents, Geoge and Azita, had no need for concern. But then, at 6 months, Clayton started seizing. Like us, they tried many AEDs. They would have "honeymoon" periods with each drug where the seizures subsided, but then they always came back.
They tried the Ketogenic Diet, which is similar to Atkins in that it's high in fat and low in carbs. It takes a lot of persistence with measuring and weighing everything the child eats. Again, they had a honeymoon period, but then they lost seizure control.
They then tried the Vagus Nerve Stimulator or VNS. This is a small device, similar to a pacemaker, implanted under the skin near your collarbone. A wire (lead) under the skin connects the device to the vagus nerve in your neck. The doctor programs the device to produce weak electrical signals that travel along the vagus nerve to your brain at regular intervals. These signals help prevent the electrical bursts in the brain that cause seizures. Again, Clayton did not achieve seizure control.
They tried every therapy in the book, but nothing was working and Clayton was only getting worse. He had lost his ability to hold up his head and roll. He had to be fed with a dropper. He hadn't had a natural bowel movement in 9 months. They were out of options.
They heard about a Los Angeles doctor who did fetal stem cells injections in the Dominican Republic for various ailments. Desperate, George and Azita packed up Clayton and went. Within 48 hours of their first injection, Clayton had a natural bowel movement. It was worth the money just with that!
But more amazing things came to follow. He was able to be spoon fed again. His body began to regain strength and control. I met Clayton after his second injection. When I met him, he still wasn't sitting up or rolling over. The next time I saw him, he was on the floor, determined to roll over. And I witnessed him do it. Soon after mastering this, he worked on his army crawl. But then he wanted to move right on to walking. Which, after his 3rd injection, he now does. He can also sit independently and, after his 4th injection, is now putting together the "cause and effect" of toys. Oh, and he's now seizure-free!
After seeing Clayton the first time and hearing his story, we knew we didn't want to wait until we had done more meds, the Keto Diet, and a VNS. We wanted those stem cells to start working as soon as possible. If we had to try more meds and treatments in the mean time, so be it. But, as far as we were concerned, time was a wastin' and we had to go--NOW!
Amy
Then my friend Julie told me about another mom whose son had gotten stem cell injections and the injection had been their miracle. I contacted this mom, Azita, and learned all about Clayton.
Unlike Soren, after Clayton was born, he was developing normally, hitting all his milestones. He was doing really, really well and his parents, Geoge and Azita, had no need for concern. But then, at 6 months, Clayton started seizing. Like us, they tried many AEDs. They would have "honeymoon" periods with each drug where the seizures subsided, but then they always came back.
They tried the Ketogenic Diet, which is similar to Atkins in that it's high in fat and low in carbs. It takes a lot of persistence with measuring and weighing everything the child eats. Again, they had a honeymoon period, but then they lost seizure control.
They then tried the Vagus Nerve Stimulator or VNS. This is a small device, similar to a pacemaker, implanted under the skin near your collarbone. A wire (lead) under the skin connects the device to the vagus nerve in your neck. The doctor programs the device to produce weak electrical signals that travel along the vagus nerve to your brain at regular intervals. These signals help prevent the electrical bursts in the brain that cause seizures. Again, Clayton did not achieve seizure control.
They tried every therapy in the book, but nothing was working and Clayton was only getting worse. He had lost his ability to hold up his head and roll. He had to be fed with a dropper. He hadn't had a natural bowel movement in 9 months. They were out of options.
They heard about a Los Angeles doctor who did fetal stem cells injections in the Dominican Republic for various ailments. Desperate, George and Azita packed up Clayton and went. Within 48 hours of their first injection, Clayton had a natural bowel movement. It was worth the money just with that!
But more amazing things came to follow. He was able to be spoon fed again. His body began to regain strength and control. I met Clayton after his second injection. When I met him, he still wasn't sitting up or rolling over. The next time I saw him, he was on the floor, determined to roll over. And I witnessed him do it. Soon after mastering this, he worked on his army crawl. But then he wanted to move right on to walking. Which, after his 3rd injection, he now does. He can also sit independently and, after his 4th injection, is now putting together the "cause and effect" of toys. Oh, and he's now seizure-free!
After seeing Clayton the first time and hearing his story, we knew we didn't want to wait until we had done more meds, the Keto Diet, and a VNS. We wanted those stem cells to start working as soon as possible. If we had to try more meds and treatments in the mean time, so be it. But, as far as we were concerned, time was a wastin' and we had to go--NOW!
Amy
Saturday, May 06, 2006
A Special Thank You to a Special Boy
I must take time out to thank Fyn Stec and his parents Dayla and Paul. Fyn is a sweet boy who is almost 5 years old. About a month and a half ago he was diagnosed with a form of liver cancer called hepatoblastoma. He has been undergoing aggressive chemotherapy and, fortunately, the tumors are responding to the treatment and shrinking. Fyn's folks have one insurance that will pay 80% of his medical bills. That leaves 20% of some very expensive bills. Thus, when word got out about Fyn's condition, people starting giving of their hearts and their pocketbooks to help Fyn's parents with these mounting expenses.
Dayla's friend Cindy set up an amazing fundraiser in honor of Fyn hosted at Cartoon Network. Artists gave their work up so willingly that the walls of the studio were covered. There were sculptures, scarves, dolls, and t-shirts. Just the most amazing collection of work I've ever seen. And in the end, they raised over $41,000 for Fyn's fund! People's generosity was astounding.
But what's even more astounding to me is that Dayla and Paul then turned around and gave $10,000 to Soren's Stem Cell fund. Despite going through such a hard and horrible time, they wanted to give to Soren, having known him since birth and seen his struggles. Thanks to their generous donation, we will now be able to go to the DR two more times.
So, I want you all to go to Fyn Stec's Blog. Read his story. And donate to Fyn's Fund! This little boy and his amazing parents need your help!
Amy
Dayla's friend Cindy set up an amazing fundraiser in honor of Fyn hosted at Cartoon Network. Artists gave their work up so willingly that the walls of the studio were covered. There were sculptures, scarves, dolls, and t-shirts. Just the most amazing collection of work I've ever seen. And in the end, they raised over $41,000 for Fyn's fund! People's generosity was astounding.
But what's even more astounding to me is that Dayla and Paul then turned around and gave $10,000 to Soren's Stem Cell fund. Despite going through such a hard and horrible time, they wanted to give to Soren, having known him since birth and seen his struggles. Thanks to their generous donation, we will now be able to go to the DR two more times.
So, I want you all to go to Fyn Stec's Blog. Read his story. And donate to Fyn's Fund! This little boy and his amazing parents need your help!
Amy
Wednesday, May 03, 2006
Cheating Off Other People's Papers
It's true. I'm a big old cheater. I, like many others, have been thrown into this horrible world of epilepsy. And I do not have the brains to read all the books or really understand it all. It takes all the energy I have to do what I manage to get done. Thanks to cribbing off other's hard work, I've managed to get Soren where he needs to be.
The main person I've cheated off of is my friend Julie. I've mentioned before that her daughter Camille and my son Soren were put in the same hospital room. And thank goodness they were. Julie has been a wealth of knowledge for me. She reads all the books, she knows all the facts, and she's met all the people. She's met so many kids who have or have had Infantile Spasms that she put together a party for us all to chat. She was the one who found out about another mom, Azita, whose son Clayton had gotten stem cell injections.
This is the next person I've cheated off of. Azita and her husband George had been through a similar hell with there son Clayton as we had been with Soren. Upon meeting them, we decided to get Soren his first stem cell injection, which I'm going to talk about in my next post. But by meeting Azita, I got hooked into an Epilepsy Support Group in Pasadena that she co-founded. That has provided us people who understand what we're going through and lots of great (though often painful) information.
Her fellow co-founder is Jane. I wrote about Jane's daughter Maddy being in the hospital in an earlier post. Maddy is out of the hospital and doing better now that she's off a drug called Keppra. Jane's goal has been to educate others with her experience so that they can make the best choices for their kids.
I could go on and on because everyone I've met on this journey has helped in some way. It's just unfortunate that I've met so many people in the same boat. As my friend Karen, whose son Ari is also struggling with seizures, once said to me, she wished the reason we all met was because our kids all had Athlete's Foot. Unfortunatly, that's not the case.
But I am so thankful that I have found all these people who are so wise and have helped guide me in giving Soren the best he can possibly have. Thanks for letting me cheat off you.
Amy
The main person I've cheated off of is my friend Julie. I've mentioned before that her daughter Camille and my son Soren were put in the same hospital room. And thank goodness they were. Julie has been a wealth of knowledge for me. She reads all the books, she knows all the facts, and she's met all the people. She's met so many kids who have or have had Infantile Spasms that she put together a party for us all to chat. She was the one who found out about another mom, Azita, whose son Clayton had gotten stem cell injections.
This is the next person I've cheated off of. Azita and her husband George had been through a similar hell with there son Clayton as we had been with Soren. Upon meeting them, we decided to get Soren his first stem cell injection, which I'm going to talk about in my next post. But by meeting Azita, I got hooked into an Epilepsy Support Group in Pasadena that she co-founded. That has provided us people who understand what we're going through and lots of great (though often painful) information.
Her fellow co-founder is Jane. I wrote about Jane's daughter Maddy being in the hospital in an earlier post. Maddy is out of the hospital and doing better now that she's off a drug called Keppra. Jane's goal has been to educate others with her experience so that they can make the best choices for their kids.
I could go on and on because everyone I've met on this journey has helped in some way. It's just unfortunate that I've met so many people in the same boat. As my friend Karen, whose son Ari is also struggling with seizures, once said to me, she wished the reason we all met was because our kids all had Athlete's Foot. Unfortunatly, that's not the case.
But I am so thankful that I have found all these people who are so wise and have helped guide me in giving Soren the best he can possibly have. Thanks for letting me cheat off you.
Amy
Friday, April 28, 2006
FINALLY ASKING FOR HELP!!!!!
Hello Everyone,
As you know, we have take Soren to the Dominican Republic two times to get him stem cell injections. Because we have to go out of the country, insurance obviously does not pay for this. We paid for the first two injections with money my Mom left us when she passed away. The first injection was $25,000. Any subsequent ones are a mere $8,500.
We are planning to get Soren another injection this December. And if possible we would like to continue to go every 6 months as long as we feel it is doing him some good.
But to do this, we need your help. To the right of the screen is a button you can click that explains how to give funds to Soren. These are unfortunately not tax deductable. But they would be going to an excellent cause and will hopefully lead to the best results ever--Soren's development!
If you have any questions regarding the stem cells, please email me at amykeatingrogers@pacbell.net. I will be happy to answer and explain anything I can.
AND, GET READY, FUNDRAISERS ARE COMING SOON!!!!!
Thank you all for your love and support!
Amy
As you know, we have take Soren to the Dominican Republic two times to get him stem cell injections. Because we have to go out of the country, insurance obviously does not pay for this. We paid for the first two injections with money my Mom left us when she passed away. The first injection was $25,000. Any subsequent ones are a mere $8,500.
We are planning to get Soren another injection this December. And if possible we would like to continue to go every 6 months as long as we feel it is doing him some good.
But to do this, we need your help. To the right of the screen is a button you can click that explains how to give funds to Soren. These are unfortunately not tax deductable. But they would be going to an excellent cause and will hopefully lead to the best results ever--Soren's development!
If you have any questions regarding the stem cells, please email me at amykeatingrogers@pacbell.net. I will be happy to answer and explain anything I can.
AND, GET READY, FUNDRAISERS ARE COMING SOON!!!!!
Thank you all for your love and support!
Amy
Tuesday, April 25, 2006
Good Thoughts for a Friend
Hello all. I need you all to send good thoughts to Soren's friend Maddy, who is having trouble getting control of her seizures right now. Maddy is currently in the hospital getting a special test called an Ictal Spect (ictal is another word for seizure).
Maddy started having seizures at 7 years old when she got encephalitis through a mosquito bite. After years of trying to get the seizures under control, they finally were under control for about 6 months (if I'm remembering corrently) just recently.
But then when they switched from one form of her medication to another, Maddy lost seizure control. It's amazing how something simple like that--which you would never think would mess something up--can totally upset everything.
I believe Maddy is now 14. And if the teen years didn't suck enough, having epilepsy makes it REALLY suck. So please send your thoughts to this amazing girl who is brave and a great example of how strong a person with epilepsy has to be.
Amy
Maddy started having seizures at 7 years old when she got encephalitis through a mosquito bite. After years of trying to get the seizures under control, they finally were under control for about 6 months (if I'm remembering corrently) just recently.
But then when they switched from one form of her medication to another, Maddy lost seizure control. It's amazing how something simple like that--which you would never think would mess something up--can totally upset everything.
I believe Maddy is now 14. And if the teen years didn't suck enough, having epilepsy makes it REALLY suck. So please send your thoughts to this amazing girl who is brave and a great example of how strong a person with epilepsy has to be.
Amy
Monday, April 24, 2006
Withdrawal
Just a break in my recounting our steroid endeavor while I get picture put on disc to post.
Currently I am weaning Soren off a drug called Zonegran. He's been on it for over a year. We knew it wasn't really working before we started the Lamictal (the drug that IS working). But once he stopped seizing, we weren't sure if the two drugs were working together, so we kept him on it. Finally, after being seizure-free for so long, we decided it was time to test if we could remove this drug.
Why? Well, Zonegran has cognitive side effects. And since Soren's development has been so slow-going, we felt that if we can improve this by removing an unneeded drug, it was worth the risk of bringing on the seizures.
The weaning has been going well. But one of the issues with weaning an AED is withdrawal seizures. Now these aren't seizures that are being controlled by the drug. They are seizures that appear due to the body adjusting to the removal of the drug that it's gotten used to.
The interesting thing is, there are drugs that are known for withdrawal seizures, like Phenobarbital (which is a bitch to get off) and ones that are NOT known for withdrawal seizures, like Zonegran. It has to do with the kind of AEDs they are and chemistry and the brain and stuff I'm not smart enough to understand.
I actually tried to withdraw Zonegran about a year ago. But Soren started seizing more when I did it, so I spoke to his doctor and was told the Zonegran doesn't caused withdrawal seizures. So we thought it was doing a tiny bit of good and went back on it.
But here's the thing, and I mean no offense to all the amazing doctors who I've been in contact with, but they are wrong. Weaning the Zonegran is (at least in Soren's case) causing withdrawal seizures. And I have confirmed with other parents that they have had similar experiences, despite what the doctors say.
And I can say this is true because every time I drop Soren down, he'll have about 2 days where he has 1-3 Absence seizures, and then it's over. His body adjusts to the lack of Zonegran and he stops seizing. And coming off the Zonegran has been SO great--Soren is much more alert, talkative, and engaged. It's amazing.
I'm writing this right after he just had a 10 second Absence seizure where he held his breath and his lips turned a bit blue. It's very disturbing. But I dropped the Zonegran down another pill this past Saturday, so it's to be expected. Still it's not fun.
Two more weeks and I remove the last pill. Once it's all out of his system, I'm really interested to see what my boy is like.
Amy
Currently I am weaning Soren off a drug called Zonegran. He's been on it for over a year. We knew it wasn't really working before we started the Lamictal (the drug that IS working). But once he stopped seizing, we weren't sure if the two drugs were working together, so we kept him on it. Finally, after being seizure-free for so long, we decided it was time to test if we could remove this drug.
Why? Well, Zonegran has cognitive side effects. And since Soren's development has been so slow-going, we felt that if we can improve this by removing an unneeded drug, it was worth the risk of bringing on the seizures.
The weaning has been going well. But one of the issues with weaning an AED is withdrawal seizures. Now these aren't seizures that are being controlled by the drug. They are seizures that appear due to the body adjusting to the removal of the drug that it's gotten used to.
The interesting thing is, there are drugs that are known for withdrawal seizures, like Phenobarbital (which is a bitch to get off) and ones that are NOT known for withdrawal seizures, like Zonegran. It has to do with the kind of AEDs they are and chemistry and the brain and stuff I'm not smart enough to understand.
I actually tried to withdraw Zonegran about a year ago. But Soren started seizing more when I did it, so I spoke to his doctor and was told the Zonegran doesn't caused withdrawal seizures. So we thought it was doing a tiny bit of good and went back on it.
But here's the thing, and I mean no offense to all the amazing doctors who I've been in contact with, but they are wrong. Weaning the Zonegran is (at least in Soren's case) causing withdrawal seizures. And I have confirmed with other parents that they have had similar experiences, despite what the doctors say.
And I can say this is true because every time I drop Soren down, he'll have about 2 days where he has 1-3 Absence seizures, and then it's over. His body adjusts to the lack of Zonegran and he stops seizing. And coming off the Zonegran has been SO great--Soren is much more alert, talkative, and engaged. It's amazing.
I'm writing this right after he just had a 10 second Absence seizure where he held his breath and his lips turned a bit blue. It's very disturbing. But I dropped the Zonegran down another pill this past Saturday, so it's to be expected. Still it's not fun.
Two more weeks and I remove the last pill. Once it's all out of his system, I'm really interested to see what my boy is like.
Amy
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