Today, John's behavior therapist came over. We haven't seen her for awhile, so we had a lot to share. She gave us some techniques to use to control him when he gets really wound up. And, she is going to come over in the morning next week to help John get on the bus. Hopefully she will have some ideas to make this easier going forward. I start my new job next week, so I will not be able to help Yoshie in the morning. She simply cannot do this herself so we need to figure out something very quickly.
We also are considering starting John on his new seizure drug (Onfi) and backing off on the Risperidone for now. We have to discuss with his doctors first though. There are several doctors now, and I want them all to be in agreement about our course of action.
We think John IS slightly better these days. It can be hard for us to tell, but we did have his sitters over again tonight and they said he was much better this week than last. We have noticed that John is eating like crazy these days. He has always been a big eater, but now he can eat non-stop for hours. Weight gain is a very common side-effect of Risperidone, and it looks like he is running in to this.
Friday, April 27, 2012
Tuesday, April 24, 2012
Doctor visit
We went back to the developmental pediatrician today, this time with John. She wanted to do an exam, but of course he wouldn't allow that. She still got to see him in action, which was great. And, we got more information about our course of action. We are going to continue to increase his Risperidone. It hasn't done much yet, but his current dose is still low so we have a long way to go.
Monday, April 23, 2012
Morning seizure
John's seizures have gotten somewhat worse lately. Today he had a big seizure in the morning and he had to sleep it off all morning so he missed the bus. We had to take him to school. He wasn't happy at all about that. They had to lock him in the room so we could escape.
Saturday, April 21, 2012
playing at the park
Just another day dealing with the "new" John. We took him to a park to play for 30 minutes while we were waiting to pick up Maya from school. When we were ready to go, he simply would not get in the car and Yoshie and I could not even force him in. Ultimately, John and I had to walk from the park to Maya's school. He continuously tried to escape (into the busy road). This is the first time that we simply could not get him in, no matter how hard we tried. It's been a two person job for a couple of weeks now, but we are at the point that even with both of us it can't be done. So far the Risperidone doesn't seem to be helping at all.
Friday, April 20, 2012
Bed-wetting and Big Al's
Well, John did wet the bed today. But, this is the first time in over a week! So, simply moving his seizure med from night to morning made a HUGE difference. And, to think we were just about to put him on another drug for this.
Today was the worst day yet for getting him on the bus. It was a huge struggle and we thought we had succeeded. We were just going back in the house when we turn around and see him in the stairwell of the bus. So, we had to do it all over again. From now on, we have to use the harness which clips him in so there is no way he can escape. I think we are getting quite a reputation in our neighborhood as there is a nice line of cars every day that have to wait for us to get him on the bus. It can take up to 10 minutes some days. Twice we have had to give up and have the bus drive around the block so we can try a second time.
Today was also my last day of my job that I have had for 14 years. To celebrate, we went out to Big Al's (a noisy restaurant, bowling alley, arcade games, etc.). We sat down and ordered and that was about all John could handle. He doesn't understand that he has to wait for his food to be prepared and he simply couldn't understand why other people were getting food before him. He became very agitated and eventually Yoshie had to take him outside so he could throw rocks in to a mud puddle. When we were done eating we went outside to find John still throwing rocks. It was very difficult to get him in to the car. I had to hold his feet while Yoshie held his arms. He fought the whole way. I'm surprised the police weren't called. It was very exhausting.
Today was the worst day yet for getting him on the bus. It was a huge struggle and we thought we had succeeded. We were just going back in the house when we turn around and see him in the stairwell of the bus. So, we had to do it all over again. From now on, we have to use the harness which clips him in so there is no way he can escape. I think we are getting quite a reputation in our neighborhood as there is a nice line of cars every day that have to wait for us to get him on the bus. It can take up to 10 minutes some days. Twice we have had to give up and have the bus drive around the block so we can try a second time.
Today was also my last day of my job that I have had for 14 years. To celebrate, we went out to Big Al's (a noisy restaurant, bowling alley, arcade games, etc.). We sat down and ordered and that was about all John could handle. He doesn't understand that he has to wait for his food to be prepared and he simply couldn't understand why other people were getting food before him. He became very agitated and eventually Yoshie had to take him outside so he could throw rocks in to a mud puddle. When we were done eating we went outside to find John still throwing rocks. It was very difficult to get him in to the car. I had to hold his feet while Yoshie held his arms. He fought the whole way. I'm surprised the police weren't called. It was very exhausting.
Thursday, April 19, 2012
Another doctor
John had 2 more big seizures on the 18th and 19th. We don't know if this is because of his new med and it's known side-effect of lowering the seizure threshold. Seems a little suspicious, though.
Today, Yoshie and I met with his new behavioral/developmental pediatrician while John was at school.
This was a good appointment, and this doctor is getting the ball rolling on a lot of things. It's obvious we've reached a point where we are struggling and need some help. She is pulling together his other doctors, his school, etc. to get everyone in the loop.
She gave us a dosing schedule to slowly increase the Risperidone, which we will start doing today. We will increase from .125 twice a day to .25 twice a day. We will have another meeting with her next week so she can see John in action.
We were able to take a video of our daily struggle to get John on the bus these days:
This goes on for another 5+ minutes inside the bus. And believe it or not, most days are worse than this. It's a horrible way to start the day, both for John and for us. I really wish we knew why he suddenly doesn't want to go to school. He rode the bus without issue for many years.
Today, Yoshie and I met with his new behavioral/developmental pediatrician while John was at school.
This was a good appointment, and this doctor is getting the ball rolling on a lot of things. It's obvious we've reached a point where we are struggling and need some help. She is pulling together his other doctors, his school, etc. to get everyone in the loop.
She gave us a dosing schedule to slowly increase the Risperidone, which we will start doing today. We will increase from .125 twice a day to .25 twice a day. We will have another meeting with her next week so she can see John in action.
We were able to take a video of our daily struggle to get John on the bus these days:
This goes on for another 5+ minutes inside the bus. And believe it or not, most days are worse than this. It's a horrible way to start the day, both for John and for us. I really wish we knew why he suddenly doesn't want to go to school. He rode the bus without issue for many years.
Sunday, April 15, 2012
Big seizure
Maya and I left for a hike today. John ended up having a big seizure in the morning, with no breathing and just his right arm shaking violently. He seemed to recover OK from this, but his behavior and aggression remains very bad.
Friday, April 13, 2012
Friday the 13th
Today started with John's appointment with his primary care physician. She came in early just to see John which was nice. John was crazy in the waiting area and at one point pulled Yoshie hard enough that she fell and bruised her backside. He continued to be wild in the doctors office and so she ended up sending Yoshie and John to the ER at OHSU. I got a phone call at work from the doctor saying that she had just sent them to the ER and that they needed to try to medicate him for his own safety. And, if they couldn't find something that would work that she would recommend sending him to a psychiatric ward until they could get him settled down.
As is typical of ER's, we had to wait a couple of hours to see anyone that could help. They did bring us back to the ER room quickly, but this required 2 men to forcefully pull him to the room. John can't just wait around so we had to make many trips up and down the hall and to the vending machines. We still needed to get some blood. They wrapped him up in blankets so he couldn't use his arms or legs and then had 3 nurses and myself attempt to hold him down so they could get some blood. Even with 4 of us we couldn't hold him still enough to get the needle in the right place. They had to poke him twice and only ended up with 1ml of blood which wasn't enough to do most of the tests. And his hand ended up completely bruised.
Yoshie had a long conversation with a social worker. I'm not sure what will come from that, but she seemed determined to help us.
We finally got to talk with the child psychiatrist. After many questions she decided that the best course of action was to start John on a low dose of Risperidone. We agreed and we were able to leave in the afternoon.
To make matters worse, I thought that someone stole our iPad from our car while parked in the ER parking lot. I even filed a police report. Turns out that I had left it at work and my friend had seen it on my desk and hid it for me (and forgot to tell me!).
We ended up keeping our plans to go out to dinner with my mom while John was cared for by Yoshie's friends. That actually went fine. John loves company and is usually pretty good at home.
Based on Yoshie's hunch, we changed when we gave John his Zonisamide from night to morning. Can you believe that he didn't wet the bed for the first time in a long time? Hopefully that will continue.
As is typical of ER's, we had to wait a couple of hours to see anyone that could help. They did bring us back to the ER room quickly, but this required 2 men to forcefully pull him to the room. John can't just wait around so we had to make many trips up and down the hall and to the vending machines. We still needed to get some blood. They wrapped him up in blankets so he couldn't use his arms or legs and then had 3 nurses and myself attempt to hold him down so they could get some blood. Even with 4 of us we couldn't hold him still enough to get the needle in the right place. They had to poke him twice and only ended up with 1ml of blood which wasn't enough to do most of the tests. And his hand ended up completely bruised.
Yoshie had a long conversation with a social worker. I'm not sure what will come from that, but she seemed determined to help us.
We finally got to talk with the child psychiatrist. After many questions she decided that the best course of action was to start John on a low dose of Risperidone. We agreed and we were able to leave in the afternoon.
To make matters worse, I thought that someone stole our iPad from our car while parked in the ER parking lot. I even filed a police report. Turns out that I had left it at work and my friend had seen it on my desk and hid it for me (and forgot to tell me!).
We ended up keeping our plans to go out to dinner with my mom while John was cared for by Yoshie's friends. That actually went fine. John loves company and is usually pretty good at home.
Based on Yoshie's hunch, we changed when we gave John his Zonisamide from night to morning. Can you believe that he didn't wet the bed for the first time in a long time? Hopefully that will continue.
Thursday, April 12, 2012
Sleep study appt
Today, we had an appt. with the sleep study center. John's neurologist referred us here due to John's issues with bed-wetting and waking up repeatedly through the night.
John was in fine form during this appointment. He fought going (and staying) in the doctors office, and threw her notes across the room when he got a chance. He put on quite a show which I think was a bit alarming to the doctor.
There is a chance that John's VNS could be the cause of his bed-wetting. Or, it could be seizures. Or, it could be too deep of a sleep due to meds. Or, it could be an issue with how his body creates urine. Or, it could be sleep apnea. Anyway, we decided a sleep study would be a good idea to help get to the bottom of it.
The doctor also wanted to start John on a new medication that limits the amount of urine that gets created. It seems he has some issue, as he can go to the bathroom dozens of times between dinner and bed. But, he needed a blood and urine sample before he could start taking this med, so we were instructed to make an appointment with his primary care doctor as soon as we could.
After seeing John at his worst, this doctor made some phone calls and got John's primary care doctor to come in early the next morning to see John first thing.
John was in fine form during this appointment. He fought going (and staying) in the doctors office, and threw her notes across the room when he got a chance. He put on quite a show which I think was a bit alarming to the doctor.
There is a chance that John's VNS could be the cause of his bed-wetting. Or, it could be seizures. Or, it could be too deep of a sleep due to meds. Or, it could be an issue with how his body creates urine. Or, it could be sleep apnea. Anyway, we decided a sleep study would be a good idea to help get to the bottom of it.
The doctor also wanted to start John on a new medication that limits the amount of urine that gets created. It seems he has some issue, as he can go to the bathroom dozens of times between dinner and bed. But, he needed a blood and urine sample before he could start taking this med, so we were instructed to make an appointment with his primary care doctor as soon as we could.
After seeing John at his worst, this doctor made some phone calls and got John's primary care doctor to come in early the next morning to see John first thing.
Wednesday, April 11, 2012
Scary
I obviously haven't been very good about keeping the blog updated. But, things are changing again so I will make an effort to keep this up to date.
John has been on 225mg of Zonisamide (taken in the evening) for quite a while now. He continues to have small "head nod" seizures throughout the day and a bigger seizure (with vomiting and ultimately sleep) once every 1-3 weeks. So, things have been pretty good, but not great.
Lately, John's behavior has become more of an issue than the seizures. He get's aggravated easily and cannot be calmed down. And, he is getting bigger which makes it harder for us (especially Yoshie) to handle.
We had a scary situation happen recently that made us realize that we need to make some changes to keep him safe.
Yoshie was driving our minivan, and was turning left from Cornell on to 185th (a very busy intersection). As she slowed down, John undid his buckle and went to the opposite side door and got out! Yoshie tried to stop him, and ended up hitting the car in front of her (only slightly, no damage). But, John still escaped and took off down Cornell barefoot. Yoshie got out and screamed for help and the guy who's car she had just hit got out and chased John down. Then, a couple of good Samaritans helped to keep John on the sidewalk while he fought to get away. By the time I arrived, the car was still in the middle of the road and several people were in the parking lot nearby. A couple were helping to keep John from escaping but the rest really didn't know what to do. I went around and told everyone of John's condition and thanked them for helping out. The guy said the scratch on his car wasn't enough to even worry about. What a nice guy! I really wish I would have gotten his name. Thankfully, I know his car very well so hopefully I will see him again.
Anyway, we obviously have to worry about safety now so some changes need to be made.
John has been on 225mg of Zonisamide (taken in the evening) for quite a while now. He continues to have small "head nod" seizures throughout the day and a bigger seizure (with vomiting and ultimately sleep) once every 1-3 weeks. So, things have been pretty good, but not great.
Lately, John's behavior has become more of an issue than the seizures. He get's aggravated easily and cannot be calmed down. And, he is getting bigger which makes it harder for us (especially Yoshie) to handle.
We had a scary situation happen recently that made us realize that we need to make some changes to keep him safe.
Yoshie was driving our minivan, and was turning left from Cornell on to 185th (a very busy intersection). As she slowed down, John undid his buckle and went to the opposite side door and got out! Yoshie tried to stop him, and ended up hitting the car in front of her (only slightly, no damage). But, John still escaped and took off down Cornell barefoot. Yoshie got out and screamed for help and the guy who's car she had just hit got out and chased John down. Then, a couple of good Samaritans helped to keep John on the sidewalk while he fought to get away. By the time I arrived, the car was still in the middle of the road and several people were in the parking lot nearby. A couple were helping to keep John from escaping but the rest really didn't know what to do. I went around and told everyone of John's condition and thanked them for helping out. The guy said the scratch on his car wasn't enough to even worry about. What a nice guy! I really wish I would have gotten his name. Thankfully, I know his car very well so hopefully I will see him again.
Anyway, we obviously have to worry about safety now so some changes need to be made.
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