We started keeping very accurate records of every seizure that we saw. This required us to watch John all of his waking hours. Things varied widely from day to day, but it looked like there was a definate trend of more seizures as the weeks went by. On Sunday, June 20, he had 36 seizures (9 clusters) that we saw. This was really scary. I called the neurologist on Monday for some advice. She wanted us to go back to 7.5mg of Tranxene and start a 3rd drug (Topamax).
It was incredibly hard for Yoshie and I to do this, but we followed through, thinking that the neurologist certainly must know what they're doing.
We also attempted to get a new neurologist during this time. The recommended neurologist had a waiting list, and at least a 3 month wait to get in. 3 months!!!??? That's not going to work. The very best we could find was a Dr. S that could get us in July 8th. Even that seemed way too far off, but we took it anyway.
Through the rest of June, we slowly titrated the Topamax up to 30mg/day. Unfortunately, John did not get any better. In fact, he seemed to get worse. He had 3 days in June with 60+ seizures. Yoshie and I had spent a lot of time studying during this time, so we knew that some drugs could make things worse. We also knew that his disease might just be progressing. We also had done some research on the ketogenic diet and we were convinced that we wanted to try it. The problem is that most neurologists won't let you even talk about it until many, many drugs have failed. By pure coincidence, it turned out that Dr. S was the only neurologist in town that supports the ketogenic diet. It seemed like it was "meant to be". The more we read, the more we thought that we wanted to do it. We were definately going to ask Dr. S when we saw him, knowing full well that he'd make us wait awhile.
I also entered the PacCrest half-ironman triathlon the last week of June. I had signed up before all of this had started, and had really been looking forward to it. I hadn't trained since June 6, so it was really foolish to even try this race, but I think I knew it was likely my last chance to do a race before I became hopelessly out of shape. I drove to Bend the day before the race. I felt terrible the entire race, and really wanted to quit. I managed to get to the finish line in a very poor time, and drove home immediately afterwards.
Yoshie had also planned to take the kids to Tokyo in late June and stay through most of July. Those plans had to be canceled. Luckily, we were able to get most of the ticket price refunded.
Wednesday, June 30, 2004
Monday, June 14, 2004
Back home
We came back home on Wed., Jun 9. We were giving him 300mg of Valproic Acid/day, as instructed. John was pretty unstable on his feet, and quite irritable. It seems like his seizures are getting worse, if anything. I tried to go to work Friday morning, but I was a complete wreck and broke down trying to explain the situation to my bosses. Work has been completely accomodating, to which I am very grateful. I only lasted a couple of hours before I came home.
I expected the medicine to help him, but it didn't seem like it was working. So, I called the neurologist Friday afternoon for some advice. She was shocked to learn that we were only giving him Valproic Acid, and not another medicine (Tranxene). I guess he was on Tranxene and Valproic Acid in the hospital, but there was some miscommunication and they forgot to get us a prescription for the Tranxene. She said that abrubtly stopping that med WILL cause seizures, and he will probably get better once he's on it again. She was going to call in the prescription. When I went to pick it up, it wasn't there. It was frustrating, as John was having to endure all of these seizures because of someones mistake. I made some more phone calls and I was finally able to get the medicine the next day.
So, John was then on 300mg Depakene (Valproic Acid) and 11.25mg Tranxene.
John's 2nd birthday was on Saturday. We had a family party at my parents house. He was showing signs of his old self, but was still really out of it. We didn't even buy him any real presents, as we decided we would celebrate his b-day when we got this all straightened out.
The Tranxene didn't seem to help at all. He stayed about the same, seizure-wise.
We went for our appt. with the neurologist on Monday. She had looked at his 24-hour EEG and she told us it was bad. She said she had only seen 1 other case in her 20 year career that was similar to this. She also said that it did not fit into any of the known epilepsy syndromes. This came as some relief, as we thought maybe John had the dreaded West Syndrome.
I asked if John might grow out of the epilepsy some day, and while she said "Anything is possible", she told us not to get our hopes up - that the kids that grow out of epilepsy usually are controlled completely by the first drug they tried. Since John had essentially seen no improvement with 2 drugs, his outlook wasn't so good.
She explained to us that the Tranxene is highly addictive and usually only works for a few months, so her plan was to take him off of that after a few months and start another medicine. She was uncomfortable with him still having so many seizures, but she didn't want to put such a young kid on 3 medicines at once.
We also asked her about surgery options, and the ketogenic diet. Her answer was that we were "years" away from those drastic measures. That made Yoshie and I a little uncomfortable, as those were the only 2 "cures" that I had heard of. Why would you have to endure years of seizures before looking for a cure?
I told her (again) about our insurance situation, how we had to switch neurologists, and how we had to pay for this visit out-of-pocket. She felt sorry for us, and didn't even charge us!
I expected the medicine to help him, but it didn't seem like it was working. So, I called the neurologist Friday afternoon for some advice. She was shocked to learn that we were only giving him Valproic Acid, and not another medicine (Tranxene). I guess he was on Tranxene and Valproic Acid in the hospital, but there was some miscommunication and they forgot to get us a prescription for the Tranxene. She said that abrubtly stopping that med WILL cause seizures, and he will probably get better once he's on it again. She was going to call in the prescription. When I went to pick it up, it wasn't there. It was frustrating, as John was having to endure all of these seizures because of someones mistake. I made some more phone calls and I was finally able to get the medicine the next day.
So, John was then on 300mg Depakene (Valproic Acid) and 11.25mg Tranxene.
John's 2nd birthday was on Saturday. We had a family party at my parents house. He was showing signs of his old self, but was still really out of it. We didn't even buy him any real presents, as we decided we would celebrate his b-day when we got this all straightened out.
The Tranxene didn't seem to help at all. He stayed about the same, seizure-wise.
We went for our appt. with the neurologist on Monday. She had looked at his 24-hour EEG and she told us it was bad. She said she had only seen 1 other case in her 20 year career that was similar to this. She also said that it did not fit into any of the known epilepsy syndromes. This came as some relief, as we thought maybe John had the dreaded West Syndrome.
I asked if John might grow out of the epilepsy some day, and while she said "Anything is possible", she told us not to get our hopes up - that the kids that grow out of epilepsy usually are controlled completely by the first drug they tried. Since John had essentially seen no improvement with 2 drugs, his outlook wasn't so good.
She explained to us that the Tranxene is highly addictive and usually only works for a few months, so her plan was to take him off of that after a few months and start another medicine. She was uncomfortable with him still having so many seizures, but she didn't want to put such a young kid on 3 medicines at once.
We also asked her about surgery options, and the ketogenic diet. Her answer was that we were "years" away from those drastic measures. That made Yoshie and I a little uncomfortable, as those were the only 2 "cures" that I had heard of. Why would you have to endure years of seizures before looking for a cure?
I told her (again) about our insurance situation, how we had to switch neurologists, and how we had to pay for this visit out-of-pocket. She felt sorry for us, and didn't even charge us!
Thursday, June 10, 2004
Hospital day #4
I turns out that a "24 hour" EEG is not necessarily 24 hours at all. They just want to make sure that they get a good sampling of his seizures. Since John only had 1 seizure type, and had a series of them hourly, they had more than enough data by morning. We were told we would be able to stop the EEG as soon as they could get someone in to remove the leads. Then, we'd probably be able to go home. We were happy to hear that we could go home, but it was a little unsettling that we were going to leave the hospital while John was actually in a worse state than when we came in.
There was some mix-up in scheduling, and we had to wait a few long hours to get the leads removed. We were able to unplug the device mid-morning, so he could at least leave the room (with a bunch of wires sticking out of his head).
When the guy finally arrived to remove the leads, it was obvious he didn't want to be there. He was so rough with John, and completely ignored John's crying, etc. It was probably the most traumatic thing all week, from John's viewpoint.
We got the MRI results in the morning as well. No problems. Again, this was a big relief. It began to look like John was one of these cases where the reason behind the seizures cannot be determined.
I was able to ask some more intelligent questions by this point, but the resident doctor couldn't really answer them. We still didn't know how to classify John's epilepsy. She said he was having atonic drops, which is when the muscles completely lose their function and you fall to the floor. To us, it seemed like his head was being forced down, and he never actually fell.
We left the hospital with a prescription for Valproic Acid, even though we thought he was on more than that. They gave us instructions to go to the ER if things got worse, but that we didn't need to call an ambulance unless the seizure lasted more than 5 minutes. John's seizures usually lasted less than 1 second. 5 minutes would seem like an eternity.
We also made an appt. to see the neurologist 5 days later, even though she was "out of plan" with my insurance.
There was some mix-up in scheduling, and we had to wait a few long hours to get the leads removed. We were able to unplug the device mid-morning, so he could at least leave the room (with a bunch of wires sticking out of his head).
When the guy finally arrived to remove the leads, it was obvious he didn't want to be there. He was so rough with John, and completely ignored John's crying, etc. It was probably the most traumatic thing all week, from John's viewpoint.
We got the MRI results in the morning as well. No problems. Again, this was a big relief. It began to look like John was one of these cases where the reason behind the seizures cannot be determined.
I was able to ask some more intelligent questions by this point, but the resident doctor couldn't really answer them. We still didn't know how to classify John's epilepsy. She said he was having atonic drops, which is when the muscles completely lose their function and you fall to the floor. To us, it seemed like his head was being forced down, and he never actually fell.
We left the hospital with a prescription for Valproic Acid, even though we thought he was on more than that. They gave us instructions to go to the ER if things got worse, but that we didn't need to call an ambulance unless the seizure lasted more than 5 minutes. John's seizures usually lasted less than 1 second. 5 minutes would seem like an eternity.
We also made an appt. to see the neurologist 5 days later, even though she was "out of plan" with my insurance.
Tuesday, June 08, 2004
Hospital day #3
John had his MRI in the morning. This wasn't one of those "open" MRI's. It was just a tube that his head would slide in to. Since this required him to be perfectly still, he had to get general anesthesia this time. The MRI took probably 30 minutes, and then they let us in to the little room to stay with him until he woke up. It took FOREVER for him to wake up. I began to really wonder if he was ever going to wake up. The nurse kept saying, "this is normal, he'll wake up any minute". When he was still out 20 minutes later, I think even she was beginning to get worried. Finally he opened his eyes, and within minutes seemed to be totally fine again.
The 24-hour video EEG was to start in the afternoon, so we had to switch rooms. After getting settled in the new smaller room, the nurse came in and glued the leads to his head. Since the leads need to stay on there for a day, they had to use strong glue and actually suction them on there. It took 30-40 minutes, which is a long time for a 1yr old to try to stay still. I'm still amazed at just how low-tech these EEG's are. The wires come from the head, down the back, and then over to a box, which is plugged in to the wall. So, John was basically plugged in to the wall with a relatively short cord. And, the video camera is only pointed at one spot. Any time John moved, (which was every couple of minutes), we had to go out to the main desk and tell them to reposition the camera. This is the 21st century! Why can't they have a wireless system, and a video camera that can follow the subject?
Every time we thought John had a seizure, we had to press a button. We weren't pros at reading his seizures yet, so we weren't always sure. Still, we were pressing the button an awful lot.
During the down time these first days, I contacted insurance and realized that this hospital was basically the only hospital in town that wasn't covered by my insurance, though they would still cover 70% after the first $2000. I called the hospital billing department, and they were very accomodating. They helped as much as they could, and assured me in the end that it would probably only cost my $1500- $2000 out of pocket. Money obviously wasn't important at that time, but it was still nice to know that I wouldn't be getting a $10000+ bill after all this. I also spent this time trying to research as much as I could about epilepsy. I learned that 80% of kids can get full control with meds and lead a normal life. Since I didn't know any better at the time, I assumed John would fall in to this 80%.
The rest of the day was spent trying to keep John occupied in this little room. Despite all his troubles, and the meds making him lethargic, he was still a 23 month old kid that wouldn't sit still for any time at all.
The 24-hour video EEG was to start in the afternoon, so we had to switch rooms. After getting settled in the new smaller room, the nurse came in and glued the leads to his head. Since the leads need to stay on there for a day, they had to use strong glue and actually suction them on there. It took 30-40 minutes, which is a long time for a 1yr old to try to stay still. I'm still amazed at just how low-tech these EEG's are. The wires come from the head, down the back, and then over to a box, which is plugged in to the wall. So, John was basically plugged in to the wall with a relatively short cord. And, the video camera is only pointed at one spot. Any time John moved, (which was every couple of minutes), we had to go out to the main desk and tell them to reposition the camera. This is the 21st century! Why can't they have a wireless system, and a video camera that can follow the subject?
Every time we thought John had a seizure, we had to press a button. We weren't pros at reading his seizures yet, so we weren't always sure. Still, we were pressing the button an awful lot.
During the down time these first days, I contacted insurance and realized that this hospital was basically the only hospital in town that wasn't covered by my insurance, though they would still cover 70% after the first $2000. I called the hospital billing department, and they were very accomodating. They helped as much as they could, and assured me in the end that it would probably only cost my $1500- $2000 out of pocket. Money obviously wasn't important at that time, but it was still nice to know that I wouldn't be getting a $10000+ bill after all this. I also spent this time trying to research as much as I could about epilepsy. I learned that 80% of kids can get full control with meds and lead a normal life. Since I didn't know any better at the time, I assumed John would fall in to this 80%.
The rest of the day was spent trying to keep John occupied in this little room. Despite all his troubles, and the meds making him lethargic, he was still a 23 month old kid that wouldn't sit still for any time at all.
Monday, June 07, 2004
Hospital day #2
Of course everything still seemed like a bad dream at this point. And, since they wake you up every couple of hours in the hospital, Yoshie and I became increasingly sleep deprived. So, that whole first week just seems like a blur.
John had a 30 minute EEG during our 2nd day at the hospital. For those that don't know, this is where they stick a bunch of wires on your head and monitor the brain activity. John was a zombie from the meds still, so he slept through this. Yoshie was actually holding him, and they wanted us to wake him for part of it, but he was just too tired. As the technician started watching the lines jumping across the screen, you could tell something was wrong. I was watching it as well, and it looked wildly erratic, but I didn't know what an EEG should look like so it didn't really alarm me. I asked the technician how it looked and she said she couldn't comment on it, and that the neurologist would be in to talk about it. It's one of those cases where she probably would have told us, had it looked normal.
The neurologist came to talk to Yoshie and I later in the day. The first thing she said, after introducing herself, was "I'm very worried about your son." She only talked to us for a few minutes, but explained how John had constant, significant abnormalities in his EEG. She made it clear that this was a serious issue, and she looked genuinely saddened to have to report this to us. She said she was determined to find out what the cause was. She ordered a CT scan, an MRI, and a "24 hour" video EEG.
John had quit throwing up by this point, but was still lethargic. Yoshie had to carry him around on her back almost the entire day. He was still having a series of small seizures almost hourly.
John had his CT scan later that day. It's a terrible feeling to have to make your 1yr old go through all these tests that I've never even had to have. He slept right through it, so he didn't need any anesthesia. Yoshie stayed in the room with him, and I went to the control room and watched the pictures come through. I asked the technician there if she could see any abnormalities, and she again said she couldn't comment. That scared me.
I think we got the results later that day - all normal. That was a big relief, but we still had the more precise MRI the following day.
John had a 30 minute EEG during our 2nd day at the hospital. For those that don't know, this is where they stick a bunch of wires on your head and monitor the brain activity. John was a zombie from the meds still, so he slept through this. Yoshie was actually holding him, and they wanted us to wake him for part of it, but he was just too tired. As the technician started watching the lines jumping across the screen, you could tell something was wrong. I was watching it as well, and it looked wildly erratic, but I didn't know what an EEG should look like so it didn't really alarm me. I asked the technician how it looked and she said she couldn't comment on it, and that the neurologist would be in to talk about it. It's one of those cases where she probably would have told us, had it looked normal.
The neurologist came to talk to Yoshie and I later in the day. The first thing she said, after introducing herself, was "I'm very worried about your son." She only talked to us for a few minutes, but explained how John had constant, significant abnormalities in his EEG. She made it clear that this was a serious issue, and she looked genuinely saddened to have to report this to us. She said she was determined to find out what the cause was. She ordered a CT scan, an MRI, and a "24 hour" video EEG.
John had quit throwing up by this point, but was still lethargic. Yoshie had to carry him around on her back almost the entire day. He was still having a series of small seizures almost hourly.
John had his CT scan later that day. It's a terrible feeling to have to make your 1yr old go through all these tests that I've never even had to have. He slept right through it, so he didn't need any anesthesia. Yoshie stayed in the room with him, and I went to the control room and watched the pictures come through. I asked the technician there if she could see any abnormalities, and she again said she couldn't comment. That scared me.
I think we got the results later that day - all normal. That was a big relief, but we still had the more precise MRI the following day.
Sunday, June 06, 2004
In the hospital - day 1
John had a bad reaction to the Ativan and started throwing up and hallucinating. And, he was still having a lot of seizures. It seemed like he was going downhill quickly. I'm really glad that we decided to stay at the hospital. At one point Yoshie said to the nurse, "he's not going to die, is he?". Her response was that they would do everything they could to keep that from happening. That wasn't a real reassuring answer. In hindsight, he wasn't in any real grave danger, but we certainly didn't know what to believe at that point.
In the afternoon, we met with the neurologist and explained everything. No, he didn't hit his head or drink any chemicals. It was a normal pregnancy and birth. He was healthy and happy. I ended up having to repeat this story to every doctor or nurse that walked in the room.
He was started on Depakene (Valproic Acid) immediately, and an EEG was scheduled for the next day. I really, really hated that they were giving him drugs. We normally wouldn't even give him Tylenol unless things got really bad. Now, they were putting drugs in him that I had never heard of, and obviously affected him a great deal.
He seemed to get a little better as the Ativan wore off. He was still having seizures, though. I had to go home to get a bag together so we could live at the hospital for a couple of days. When I returned, John was asleep.
In the afternoon, we met with the neurologist and explained everything. No, he didn't hit his head or drink any chemicals. It was a normal pregnancy and birth. He was healthy and happy. I ended up having to repeat this story to every doctor or nurse that walked in the room.
He was started on Depakene (Valproic Acid) immediately, and an EEG was scheduled for the next day. I really, really hated that they were giving him drugs. We normally wouldn't even give him Tylenol unless things got really bad. Now, they were putting drugs in him that I had never heard of, and obviously affected him a great deal.
He seemed to get a little better as the Ativan wore off. He was still having seizures, though. I had to go home to get a bag together so we could live at the hospital for a couple of days. When I returned, John was asleep.
ER
The urgent clinic recommended that we go to Emanuel hospital, and off we went. I had no idea at the time if my insurance would cover this hospital or not, but that was the least of our concerns. We had to wait quite awhile to get in to the ER. Once in there, we were told pretty quickly that he was having seizures and that he had epilepsy. This seemed impossible to me, as I've never even known anyone with epilepsy and I always assumed it was just something you'd know at birth if it were a problem.
The ER docs were consulting via phone with the neurologist, and since it was a weekend it was taking a long time. We talked to a couple of nurses there that made it sound like it wasn't a big deal, and something we could take care of with some drugs. They finally gave John some Ativan to stop the seizures. They were set to discharge us, with instructions to make an appt. with a neurologist as soon as we could. Even with the Ativan, John was still having head drops. I think Yoshie and I must have looked pretty worried, because they asked us if we wanted to get admitted to the hospital "just to make us feel better". We took them up on the offer.
The ER docs were consulting via phone with the neurologist, and since it was a weekend it was taking a long time. We talked to a couple of nurses there that made it sound like it wasn't a big deal, and something we could take care of with some drugs. They finally gave John some Ativan to stop the seizures. They were set to discharge us, with instructions to make an appt. with a neurologist as soon as we could. Even with the Ativan, John was still having head drops. I think Yoshie and I must have looked pretty worried, because they asked us if we wanted to get admitted to the hospital "just to make us feel better". We took them up on the offer.
How it all started
John's seizures came as a complete shock to Yoshie and I. John was a completely happy and healthy kid before all of this started. He was cognitively on track up through his 18mo check-up at least.
Yoshie first noticed something strange when John was around 22 months old. He seemed to blank out for just a bit when we were at a swimming party. I don't think she even mentioned it to me. In any case, we weren't at all concerned. At around 23 months, we started seeing his head drop every now and then. It was just like you sometimes see when young kids fall asleep while eating. Yoshie began to get concerned, but I brushed it off as nothing. She even called the pediatrician at one point, but was told that this was just normal for kids his age. She made an appt. anyway to see the Dr. just a couple of days before his birthday. About this time, we also started to realize that John wasn't learning words anymore. In fact, it seemed he really hadn't learned any words since about 18 months. He had a total vocabulary of about 30 words (between Japanese and English), which wasn't enough for an almost 2 year old. Still, we weren't overly concerned.
About 10 days before his 2nd birthday, the head drops started happening more frequently, and he started having several in a row. I think at this point we started to realize something was really wrong. On June 5, we went to Maya's dance recital, and John was having these episodes quite frequently. On June 6, I went out for my normal weekend bike ride, but turned around early just because I was worried about John. When I got home, he came up to me and blanked out, which resulted in him falling right on me. He was out for a couple of seconds. It scared me to death. We went directly to the urgent care clinic. He continued to have these little seizures during the seemingly endless wait at the clinic. Yoshie finally complained that he was "passing out" and they let us right in. He continued to have these little seizures while the doctor looked at him. Nobody ever called these "seizures", but she wanted us to go directly to the ER. This came as a shock, as we still thought maybe he just had an ear infection or something that was causing him to have a bad headache or something.
Yoshie first noticed something strange when John was around 22 months old. He seemed to blank out for just a bit when we were at a swimming party. I don't think she even mentioned it to me. In any case, we weren't at all concerned. At around 23 months, we started seeing his head drop every now and then. It was just like you sometimes see when young kids fall asleep while eating. Yoshie began to get concerned, but I brushed it off as nothing. She even called the pediatrician at one point, but was told that this was just normal for kids his age. She made an appt. anyway to see the Dr. just a couple of days before his birthday. About this time, we also started to realize that John wasn't learning words anymore. In fact, it seemed he really hadn't learned any words since about 18 months. He had a total vocabulary of about 30 words (between Japanese and English), which wasn't enough for an almost 2 year old. Still, we weren't overly concerned.
About 10 days before his 2nd birthday, the head drops started happening more frequently, and he started having several in a row. I think at this point we started to realize something was really wrong. On June 5, we went to Maya's dance recital, and John was having these episodes quite frequently. On June 6, I went out for my normal weekend bike ride, but turned around early just because I was worried about John. When I got home, he came up to me and blanked out, which resulted in him falling right on me. He was out for a couple of seconds. It scared me to death. We went directly to the urgent care clinic. He continued to have these little seizures during the seemingly endless wait at the clinic. Yoshie finally complained that he was "passing out" and they let us right in. He continued to have these little seizures while the doctor looked at him. Nobody ever called these "seizures", but she wanted us to go directly to the ER. This came as a shock, as we still thought maybe he just had an ear infection or something that was causing him to have a bad headache or something.
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