Last year at this time, I wrote a note thanking you all for caring about Soren. Well, I had a conversation last night that made me realize that I must do this again.
Through the amazing world of the internet, Aaron's ex-girlfriend from high school ended up finding my website which then led her here to Soren's blog. And then the sad coincidence is that her sister has two children with Epilepsy. So she emailed me to check if it was okay to give our information to her sister. We said of course, feeling that we always have to help others in this unfortunate situation.
What's even more unfortunate is that her sister hasn't had any one to talk to--no support group, no friends in the same boat, no respite or state assistance. When all this started with her first son, she was actually shunned by people she told. This made her close off from telling people and reaching out for help.
This made me so sad for her and her family. But it also made me so thankful for all of you. I don't know how many people read Soren's blog. But I'm always happily surprised when someone sends me a note saying they were catching up on the blog. You all have expressed concern over Soren's seizures, were indignant when we were treated badly, or were happy to see how good he's looking.
From the beginning of this journey, all our friends and family have been there for us--friends with typical kids, friends with special needs kids, friends with no kids! I didn't realize that this isn't true for everyone and how lucky I am to have all that. And I'm really, really thankful. Without all of you there sending your good thoughts to us, I don't know what I'd do.
And as this journey continues, it's our turn to help someone who needs the support you all have given us. I know it was really hard for her to call me last night, but I'm so glad she did. Aaron went online after the call and found a bunch of information on state assistance and Epilepsy support in her area. Hopefully this will lead her to getting the support and guidance she needs.
Thank you all for reading. Thank you all for caring. Thank you all for being our friends. It really means the world to us.
Happy Thanksgiving!
Amy
Monday, November 19, 2007
Thursday, November 08, 2007
Seizures and The Brain Storm Summit
Hey everyone,
It's been a bit since I posted. My computer was getting a much needed service. But now that we're back in business, I have a bunch of stuff to tell you about.
First of all, Soren went another 20 days without a seizure. And then, like clockwork, he had 2 seizures last Monday, on what would have been day 21. Knowing he was catching a cold, I picked him up from school. No more seizures that day. I kept him home Tuesday. Completely seizure-free. He went back to school Wednesday (Halloween) and had another seizure! But the rest of the week was uneventful, seizure-wise, so that was good.
Thursday we had an appointment to get a second opinion from a neurosurgeon on whether Soren would be a surgical candidate for mulit-focal surgery. The surgeon was a lovely guy and agreed with Soren's pediatric neurologist that Soren has too much activity going on in too many lobes of his brain to do surgery.
However, he did think Soren was a good candidate for a VNS (the devise that his cousin Karis had put in a few weeks ago). Now, we've been hesitant about this because we know, as with all treatments, the VNS only helps a certain number of people. Actually about 50% of the people who have it put in benefit from the device. And it's not a cure. You usually have to remain on some meds. But the hope is that the VNS (which has no side effects other than a possible scratchy throat) cuts down on the frequency and severity of the seizures by 50%. Then the patient can hopefully decrease their meds a bit, so you have less side-effects from those. But, if the devise doesn't work, it can only be partially removed. The wire (I think it's a wire) that's wrapped around the Vagal Nerve must remain there. Not that this is a big deal, but it's something.
We have Soren's scans out to a doctor at Johns Hopkins and another at Miami Children's. Both have excellent Epilepsy centers, so we'll see what they think in regards to surgery and the VNS.
The other thing Soren and I did while at this visit was get his blood drawn for another genetic test. I'll explain that more another day. But he was a trooper.
Then Saturday, Aaron and I went to the Epilepsy Brain Storm Summit, a conference on what's coming up as far as treatment for intractable (uncontrolled) seizures. I wrote a while ago about another device called a RNS--responsive neurostimulator. Unlike the VNS which is put on the Vagul Nerve in your neck, the RNS is implanted in your brian. Very Bionic Woman-style. After doing some research on this, I found out that Soren is not currently a candidate because it is still in clinical studies. And they do studies on adults first (they have some crazy ethical rules about not testing on kids for some reason), they make sure it works, and then it eventually trickles down to the kids. So that's about 2 years down the road.
There is a second brain stimulation device also in studies. The two devices work differently. The RNS is about the size of an iPod mini and it's put either in your skull or on your skull--I didn't quite get the details on that. It has wires coming from it that are positioned above the focal points of the seizures. Currently this would work for someone with up to 3 seizure focal points. When the device detects a seizure, it sends out an electic pulse to counter the seizure.
The other device is described as an "Anterior thalamic nucleus stimulator." With this, the wires don't target specific focal points. Instead, a wire is placed in the Thalamus and about every 5 minutes, it sends out a pulse, hopefully catching any seizure activity. This is similar to the VNS, but the lead is directly in the brain instead of going up the the Vagul Nerve. The good thing about this device is that if you have too many focal points or don't know exactly where the focal points are or can't reach them, the pulse will hopefully still be able to catch the seizure. Again, this is in studies and at least 2 years down the road.
Lastly, there are a bunch of new AEDs (anti-epileptic drugs) coming down the pike. There are a bunch that are "sisters" to previous drugs, but hopefully with less side effects. And then there are new drugs that are truly new and unrelated to old drugs. For people who haven't responded at all to the old drugs, this would be great.
It was a lot of information for one day, but it was very encouraging to hear how hard doctors are working to help people--children and adults--with Epilepsy. 1 in 100 people have Epilepsy. Of those, 50% respond to medicine and are able to control their seizures. 10% will respond to the new meds. 5% will be candidates for surgery.
But that leaves 35% who have uncontrolled seizures. And everyone in that room was either one of those 35% or related to them. The vibe in the room was kind of sad. Beaten down. So many people who have been devistated by seizures and are searching for control or, ideally, a cure. One parent described how seizures have affected his child. A child can be developing perfectly normally, but as soon as a seizure hits, so much is lost. They said it's like information being written down in pencil, but then someone is following behind erasing that pencil. Soren's barely had enough written down that hasn't been erased to fill a page.
But as much as there was sadness, there was also hope. These new drugs and devises that will hopefully work for some of the 35%. Maybe they'll work on Soren and we can start writing stuff down in ink.
Amy
It's been a bit since I posted. My computer was getting a much needed service. But now that we're back in business, I have a bunch of stuff to tell you about.
First of all, Soren went another 20 days without a seizure. And then, like clockwork, he had 2 seizures last Monday, on what would have been day 21. Knowing he was catching a cold, I picked him up from school. No more seizures that day. I kept him home Tuesday. Completely seizure-free. He went back to school Wednesday (Halloween) and had another seizure! But the rest of the week was uneventful, seizure-wise, so that was good.
Thursday we had an appointment to get a second opinion from a neurosurgeon on whether Soren would be a surgical candidate for mulit-focal surgery. The surgeon was a lovely guy and agreed with Soren's pediatric neurologist that Soren has too much activity going on in too many lobes of his brain to do surgery.
However, he did think Soren was a good candidate for a VNS (the devise that his cousin Karis had put in a few weeks ago). Now, we've been hesitant about this because we know, as with all treatments, the VNS only helps a certain number of people. Actually about 50% of the people who have it put in benefit from the device. And it's not a cure. You usually have to remain on some meds. But the hope is that the VNS (which has no side effects other than a possible scratchy throat) cuts down on the frequency and severity of the seizures by 50%. Then the patient can hopefully decrease their meds a bit, so you have less side-effects from those. But, if the devise doesn't work, it can only be partially removed. The wire (I think it's a wire) that's wrapped around the Vagal Nerve must remain there. Not that this is a big deal, but it's something.
We have Soren's scans out to a doctor at Johns Hopkins and another at Miami Children's. Both have excellent Epilepsy centers, so we'll see what they think in regards to surgery and the VNS.
The other thing Soren and I did while at this visit was get his blood drawn for another genetic test. I'll explain that more another day. But he was a trooper.
Then Saturday, Aaron and I went to the Epilepsy Brain Storm Summit, a conference on what's coming up as far as treatment for intractable (uncontrolled) seizures. I wrote a while ago about another device called a RNS--responsive neurostimulator. Unlike the VNS which is put on the Vagul Nerve in your neck, the RNS is implanted in your brian. Very Bionic Woman-style. After doing some research on this, I found out that Soren is not currently a candidate because it is still in clinical studies. And they do studies on adults first (they have some crazy ethical rules about not testing on kids for some reason), they make sure it works, and then it eventually trickles down to the kids. So that's about 2 years down the road.
There is a second brain stimulation device also in studies. The two devices work differently. The RNS is about the size of an iPod mini and it's put either in your skull or on your skull--I didn't quite get the details on that. It has wires coming from it that are positioned above the focal points of the seizures. Currently this would work for someone with up to 3 seizure focal points. When the device detects a seizure, it sends out an electic pulse to counter the seizure.
The other device is described as an "Anterior thalamic nucleus stimulator." With this, the wires don't target specific focal points. Instead, a wire is placed in the Thalamus and about every 5 minutes, it sends out a pulse, hopefully catching any seizure activity. This is similar to the VNS, but the lead is directly in the brain instead of going up the the Vagul Nerve. The good thing about this device is that if you have too many focal points or don't know exactly where the focal points are or can't reach them, the pulse will hopefully still be able to catch the seizure. Again, this is in studies and at least 2 years down the road.
Lastly, there are a bunch of new AEDs (anti-epileptic drugs) coming down the pike. There are a bunch that are "sisters" to previous drugs, but hopefully with less side effects. And then there are new drugs that are truly new and unrelated to old drugs. For people who haven't responded at all to the old drugs, this would be great.
It was a lot of information for one day, but it was very encouraging to hear how hard doctors are working to help people--children and adults--with Epilepsy. 1 in 100 people have Epilepsy. Of those, 50% respond to medicine and are able to control their seizures. 10% will respond to the new meds. 5% will be candidates for surgery.
But that leaves 35% who have uncontrolled seizures. And everyone in that room was either one of those 35% or related to them. The vibe in the room was kind of sad. Beaten down. So many people who have been devistated by seizures and are searching for control or, ideally, a cure. One parent described how seizures have affected his child. A child can be developing perfectly normally, but as soon as a seizure hits, so much is lost. They said it's like information being written down in pencil, but then someone is following behind erasing that pencil. Soren's barely had enough written down that hasn't been erased to fill a page.
But as much as there was sadness, there was also hope. These new drugs and devises that will hopefully work for some of the 35%. Maybe they'll work on Soren and we can start writing stuff down in ink.
Amy
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