Today we got a call from the neurologist with the EEG results. It looks like Calvin does not have the Benign Rolandic Epilepsy as we had previously thought and hoped. He does have some kind of epilepsy however. The EEG showed epileptic activity awake and asleep but the pattern and point of origin was different than what would be expected in Benign rolandic epilepsy. With this news, the neurologist recommended we start Calvin on an anti-epileptic medication today and that we schedule an MRI to look for a possible physical cause for the seizures such as a tumor or other anatomical abnormality. At this point I am still not too worried, as long as it doesn't develp into something more serious we are fine with this result. The medication recommended (oxcarbazepine) will not have too many side effects and it is possible it might even help us with other aspects of Calvin's life since it also known to be a mood stabilizer (yes please!).
MRI will most likely be in a week or two and then we will meet with the epileptic specialist on Aug 6th to hopefully find out exactly what type of epilepsy Calvin has and what to expect now and in the future.
Thursday, June 28, 2012
Brain Lab Experience
The sleep deprived brain lab went well.
In preparation for the test, Dave and Clare and Calvin went out to run a couple of errands around 9pm (we decided to let Clare stay up late too to help keep Calvin company). The kids were so slap happy that when we put them to bed at 10:45, the still bounced off the walls for an hour.
Dave set his alarm and woke up Calvin at 3:45. They ate breakfast and then watched a movie. At around 6 I got up and Dave went back to bed for a nap. By the time I got up Calvin was so tired I couldn't let him sit down. He was quite pleasant and thought it was funny to say, "oh, I'm just going to go lay down and have a quick nap....."
We dropped off the girls with babysitters and headed for the hospital. It was a full time job for me to keep Calvin awake in the car!
AFter checking in and waiting, Calvin was brought to a quiet corner of the hospital. He laid down on a bed while the tech connected about 20 electrodes to his head. He was very patient. He was starting to fall asleep while he was holding still so I had to work to keep him awake. I think this irritated him. Once he was all hooked up the tech left the room and turned out the lights and asked Calvin to close his eyes. The hope is that he would fall asleep so that the Dr. could see him go into sleep and then come out of sleep. Calvin was not super cooperative and didn't want to close his eyes. Dave sat and talked with him to help him stay calm but he wouldn't rest his eyes! He said he needed to go to the bathroom. When we asked the tech to help us get him to the bathroom she came to help him get up with all of his wires attached but Calvin ripped them all off.
After going to the bathroom a new (more experienced) girl named Jen took over. The first tec, Venus, had told me it was only her 2nd day on the job. She had previously worked almost 20 years for the navy so though she knew what she was doing she didn't know how to work with kids. It was very kind of Jen to tell us she would re-set up all the electrodes. She was able to do so in about 5-10 minutes. (It had taken the first girl a good 20-30. She spoke to Calvin in a sweet and enthusiastic voice and he responded well to her. She told him that after she got him hooked up he would need to close his eyes for a few minutes so the Dr. could look at his brain waves. We also increased our bribe from in-n-out to a new lego set. Calvin was obedient to her and afters a few minutes of keeping his eyes closed he fell asleep!
The tech let Calvin sleep for about 10 minutes and then came in the room to wake him up. He was in a pretty good mood when he woke up and was cooperative for the rest of the test. He was asked to blow on a pinwheel for 3 minutes to hyperventilate him. Then she put a strobe light directly over his face and he looked into the light while it fired. Sometimes he was supposed to have his eyes closed when the light fired.
The rest of our day was the same as always -- we swam with some friends and then Calvin had scouts in the evening.
The results of the EEG will be read by a neurologist within a couple of days and a report will be sent to our Primary Care DR. I am assuming he will call us when he gets those. If we are lucky, the EEG will be a classic case of benign rolandic epilepsy which has a distinct pattern on the EEG. However, finding epilepsy on an EEG is a tricky thing. Dave has had patients with very serious seizure disorders come into the hospital and stay for days being monitored round the clock and nothing helpful shows up on the EEG. Dave says he has even taken off the top of the skull to place electrodes directly on the brain to try and find seizures for some desperate patients. That is why I say, if we are lucky, we will see something on this first test which will tell us more information.
I scheduled an appointment with the neurologist at the end of July so that we can discuss what to do.
Poor Dave who was pretty sleep deprived himself got paged last night as we were going to bed and had to go in! He didn't get home 'til around 3:30.
And, Mr. Calvin after having 2 days at home didn't want to go to school today. I got him on the bus by buying him a new app for the kindle fire, figuring $1 for a new app is cheaper than the 10 or whatever it would cost in gas if I have to drive him down to school. Calvin got on the bus at 7:20 but the bus brought him back home at 7:40 because he was being too difficult to control on the bus. So, it's time to pack up and take Calvin to school and then stop at dog beach! It is a beautiful summer day!
Tuesday, June 26, 2012
Sleep Deprived Brain Lab
Tomorrow morning Calvin has a brain lab (EEG). He is supposed to be sleep deprived so our instructions are to keep him up 'til 11pm and then wake him at 3am for the day. We are going to let him sleep 'til 4 since he will still be plenty tired for his appointment at 10:15. Once he gets to the appointment they will hook him up to the electrodes and then put him in a dark room to sleep. They want to watch him go to sleep and wake up out of sleep.
Dave and I are taking shifts. Dave will get up at 4am with him and then I will wake up at 6 so Dave can take a nap from 6-9am before we leave. I am interested to see how the day goes and will hopefully post again tomorrow night after it is over.
Dave and I are taking shifts. Dave will get up at 4am with him and then I will wake up at 6 so Dave can take a nap from 6-9am before we leave. I am interested to see how the day goes and will hopefully post again tomorrow night after it is over.
something new
Calvin had a seizure this morning at around 6:30am. It was not a grand mal seizure of the type that you see on TV. It was a small seizure about 30 seconds. He lost facial control and his left arm was twitching. He was ashen white and though conscious, totally unresponsive and unaware of what was going on around him. It was kind of crazy to watch. Even though it was not dramatic, it was kind of scary to know that his brain was going haywire.
After the seizure Calvin came to we asked him if he was okay and he said yes and then went right back to sleep. Dave says people often sleep after seizures since it is such tiring brain activity.
We had thought we should take him to the ER, like any parent would after witnessing their kid have a seizure but Dave thought that before we went in, he should give the neurology resident on call a quick call to ask for advice (I knew being married to a DR. would help us at some point in life!) to ask him what to do. The neurology resident said that he would call andl schedule an EEG and an appointment with one of the epilipsy specialists in clinic. Since it wasn't a large or dangerous seizure there is no need to go to the ER as there is nothing they would do for him there besides tell us to follow up in the outpatient neurology clinic. Based on the description of the seizure, the time of day (6:15 am as calvin was waking up), and Calvin's age we are told it is most likely Benign Rolandic Epilepsy.
After the seizure Calvin came to we asked him if he was okay and he said yes and then went right back to sleep. Dave says people often sleep after seizures since it is such tiring brain activity.
We had thought we should take him to the ER, like any parent would after witnessing their kid have a seizure but Dave thought that before we went in, he should give the neurology resident on call a quick call to ask for advice (I knew being married to a DR. would help us at some point in life!) to ask him what to do. The neurology resident said that he would call andl schedule an EEG and an appointment with one of the epilipsy specialists in clinic. Since it wasn't a large or dangerous seizure there is no need to go to the ER as there is nothing they would do for him there besides tell us to follow up in the outpatient neurology clinic. Based on the description of the seizure, the time of day (6:15 am as calvin was waking up), and Calvin's age we are told it is most likely Benign Rolandic Epilepsy.
Further testing will confirm or refute this idea and then we will see where to go from there.
One of the tender mercies about this morning is that Dave was with me when Calvin had the seizure. Most mornings I get up and help Calvin get ready for school. Dave either sleeps in, or gets up and goes to basketball, or gets up and goes right to work downstairs. This morning he got up right around 6:30. Calvin was sleeping on the couch upstairs (he very often gets up in the night and then falls back asleep on the couch upstairs so that was not unusual). I had gotten up at 6:20 and sat next to Calvin reading for a few minutes waiting to see if he'd wake up on his own or if I'd need to wake him up. Then around 6:30 dave came walking into the room and sat down next to us and we were both literally staring at Calvin when he began to stir a bit, sat up part way and then began seizing within just a minute of dave coming into the room and sitting down. It was good to have Dave's medical eyes on him observing him as a Dr. so that he could report what had happened.
This is not Calvin's first seizure, though it is the first one that we recognized as a seizure. About two weeks ago I had a similar experience with Calvin. I went in to wake up Calvin and he started waking up. I asked him something and then he tried to respond but couldn't talk or move for a few seconds. That time it was probably 10 seconds or less and there was no twitching that I observed. I mentioned it to dave and he said it could have been a seizure but at that time he wasn't too concerned. Looking back now I know with 100% certainty that it was a seizure.
There are some other situations that we've had over the last year or so, maybe even two years where Calvin has had something weird going on. I am still not sure if these episodes were seizures or not. I will be interested to see what the Dr. says. Sometimes Calvin will turn really white, and have trouble talking. He will look really weird and then he'll say, "I'm tired" and lay down and go to sleep. This has happened at home, it has happened when we are out and about. I have learned to recognize it and it is the same every time. When Calvin does go to sleep, sometimes it is 10 minutes and other times it is an hour. I wonder if these have been little mini seizures he has been having. They have occurred infrequently and irregularly at the most twice in a month but sometimes being spaced out over a few months. I have asked our regular family doc, the behavioral/developmental pediatrician, autism doc, psychologist and psychiatrist about this and everyone of them said nothing (but I'm assuming thought I was crazy) when I described this to them in various appointments over the last year. It has been a medical mystery to me. Like I said, I still don't know if seizures are the answer but we will see if the neurologist thinks so.
Tuesday, June 19, 2012
stability
I feel like there isn't a lot to write about our situation these days. Things aren't changing much day by day. School is going really well for Calvin. He is happy and settled in his new program. He is learning and making progress. It is pretty unlikely that we'll be making any changes to his school situation in the near future. There is great hope in his program and in the progress he is showing.
At home and in "regular" life we have the same challenges as always, ridiculous uses of profanity, extreme difficulty in maintaining peace and order and showing ourselves in public without a scene. Sometimes the feeling of hopelessness is overwhelming. Other times I do a good job of getting done what I need to get done and then marching through the difficult times with a single shred of dignity to keep me company. I have noticed that a good walk and a good meal really help my attitude -- missing either of those for more than a day there is a good chance things are not going well.
At home and in "regular" life we have the same challenges as always, ridiculous uses of profanity, extreme difficulty in maintaining peace and order and showing ourselves in public without a scene. Sometimes the feeling of hopelessness is overwhelming. Other times I do a good job of getting done what I need to get done and then marching through the difficult times with a single shred of dignity to keep me company. I have noticed that a good walk and a good meal really help my attitude -- missing either of those for more than a day there is a good chance things are not going well.
Wednesday, June 13, 2012
The cost of an Effective Education/ Cook Talent Show
Last week there was a talent show at Calvin's school so I went down to watch his music class sing. They did a nice job! I was chatting with one of the moms as we walked to our cars. Her son is the same age as mine and just started at the school a few months ago. I was asking about their journey to get to this school and she told me that they recently moved from out of state and knowing that public school wouldn't work they enrolled in private school. Since Calvin's tuition is covered by our school district I only had a ballpark guess (20-30K) as to how much tuition is. Curiosity getting the better of me I asked this Mom plainly, "how much do you pay for tuition?" The answer "Thirty-six thousand dollars per year." I was shocked! That is much more than I had thought.
I have been stewing over this information for days and several thoughts have dominated. 1. It is a miracle that we got Calvin into this school so quickly and that the district so willingly paid for it. It took only a few months. and we didn't have to hire an attorney or an advocate. That is pretty rare. 2. How will we ever manage to move to another school? It is so unlikely that a district will pick up Calvin as a student and just offer to send him to a private school? (When a special education student moves districts they get 30 days of coverage while they are re-evaluated and get a new IEP. A complete set of testing takes place and then they determine placement. I am sure that a district would try to place him in their own special education classes and then the only way to move to non-public school would be to fail out of them as he has here. Who would do that to a child who is stable? And I'm assuming Calvin will be stable 2 years from now . .. . And if the district doesn't pay, it is in no way possible for us to pay out of pocket such an exorbitant amount of $ for Calvin's schooling and yet, it is not really possible to live without it either. I will be a tiny bit patient and wait until we know more of our plans before I completely panic, but this definitely weighs heavily on my mind. 3.No wonder this school is good at what they do!
In addition to the school district paying for tuition, they also provide transportation to and from school in the form of a bus that comes to our house and delivers Calvin from our driveway to school and back. The district also pays for services through the county of mental health at a clinic (at children's hospital) such as therapy, family therapy, counseling, and medication management.
After just a few years of this Calvin's education will exceed the cost of Dave's medical school education. This is mind boggling to me but I am hopeful that just as Dave's education has served him well, so will Calvin's and that in the end he will be ready to face the world with as much hope in a bright future as his Dad had when he put an MD after his name!
I have been stewing over this information for days and several thoughts have dominated. 1. It is a miracle that we got Calvin into this school so quickly and that the district so willingly paid for it. It took only a few months. and we didn't have to hire an attorney or an advocate. That is pretty rare. 2. How will we ever manage to move to another school? It is so unlikely that a district will pick up Calvin as a student and just offer to send him to a private school? (When a special education student moves districts they get 30 days of coverage while they are re-evaluated and get a new IEP. A complete set of testing takes place and then they determine placement. I am sure that a district would try to place him in their own special education classes and then the only way to move to non-public school would be to fail out of them as he has here. Who would do that to a child who is stable? And I'm assuming Calvin will be stable 2 years from now . .. . And if the district doesn't pay, it is in no way possible for us to pay out of pocket such an exorbitant amount of $ for Calvin's schooling and yet, it is not really possible to live without it either. I will be a tiny bit patient and wait until we know more of our plans before I completely panic, but this definitely weighs heavily on my mind. 3.No wonder this school is good at what they do!
In addition to the school district paying for tuition, they also provide transportation to and from school in the form of a bus that comes to our house and delivers Calvin from our driveway to school and back. The district also pays for services through the county of mental health at a clinic (at children's hospital) such as therapy, family therapy, counseling, and medication management.
After just a few years of this Calvin's education will exceed the cost of Dave's medical school education. This is mind boggling to me but I am hopeful that just as Dave's education has served him well, so will Calvin's and that in the end he will be ready to face the world with as much hope in a bright future as his Dad had when he put an MD after his name!
Friday, June 8, 2012
1st day of summer and guessing game!
Today is the first day of summer for Clare and Alexey!! Calvin's school continues for another few weeks with his first day of summer being August 1st. I am really looking forward to the time with just the girls at home. We are going to try to do morning jobs and then some fun things together which we wouldn't be able to do with Calvin. In the afternoons when Calvin gets home we will swim! I think Calvin will not feel bad about summer school as long as he gets to swim everyday and we also set up some fun activites with friends for some of our afternoons when he is around.
The summer bus schedule will change a bit so Calvin will be home 20 minutes longer in the morning and get home about 45 minutes earlier in the afternoon which will be nice.
This week I found out how much tuition is at Calvin's school. (since the school district is paying I never knew the exact amount before) Anyone want to guess yearly tuition at our non-public school?
The summer bus schedule will change a bit so Calvin will be home 20 minutes longer in the morning and get home about 45 minutes earlier in the afternoon which will be nice.
This week I found out how much tuition is at Calvin's school. (since the school district is paying I never knew the exact amount before) Anyone want to guess yearly tuition at our non-public school?
Tuesday, June 5, 2012
IEP - a refreshing Non-Public School experience
We had our first IEP meeting at the new school. It was a good meeting. SO MUCH BETTER than any meeting I have been to thus far. There is a reason that there are non-public schools!
The first major and welcome difference between this meeting and other IEP meetings I have attended is that I got a paper copy of everything before I even showed up! For every single IEP I have had and I have been to a dozen at least, I have asked for a copy to read before the meeting. I got all kinds of crazy responses to this question such as, "well, it won't be done until right before the meeting so I won't have time to get it to you" to which I replied, "Email me a copy when you are done. Even if it is just a few hours before." This never happened. I showed up to every meeting previous to this date having no idea what goals would be proposed and what current levels would be. It was ridiculous. Enough ranting, back to the meeting....
We went over Calvin's current levels. For the most part he is at grade level. This in and of itself is kind of a miracle considering he hasn't had consistent schooling since mid-2nd grade. His behavior is difficult to say the least. Most of his trouble behavior comes when he is asked to do non-preferred tasks or something else he doesn't want to do. It is obvious to all that Calvin seeks to be in control of his environment and when he isn't in control he tries his best to regain control by causing enough trouble that those who are in control will give up and let him have his way. They are doing their best to set up a program for Calvin where he can have some control and yet be enticed to get some work done during the school day. The amount of individual attenion he is getting is amazing. At his school, there is a unique "program" for each student there so that it is suited to their needs.
Goals were proposed for the next year addressing Calvin's areas of academic weakness and of course, social skills which he is lacking. The goals are lofty, yet hopefully they are also attainable.
Another welcome difference between this and other IEP meetings is that there was some real conversation! This may sound kind of weird and I'm not sure best how to describe it except to say that at most IEP meetings there is the usual greeting and small talk before the meeting starts. Once the meeting begins the IEP is read over. If I ask any questions, they are always answered in a very business-like way and always using the IEP language which affords no room for practical inferences and common sense. Everything is always formal and careful since school districts are #1. careful not to give any services except those required by law and #2. do not want to put themselves in danger of giving any information which cannot be addressed within the limits of the IEP and therefore expose themselves to a lawsuit if something is discussed and not followed up within the IEP. The formality of the conversation within the IEP document makes it difficult to brainstorm ideas and discuss openly the real problems that are happening.
At our most recent IEP after reviewing the IEP I had several questions. These were addressed in a more normal flow of conversation with a good discussion ensuing. It was so refreshing to talk about concerns and to be able to ask "what do you think?" without receiving fake, guarded answers in return.
Dave's first and only question was "Do you think you can handle Calvin now that you have seen what he is really like? " To his relief the answer was and enthusiastic "YES!"
In attendance at the IEP meeting were 2 of Calvin's teachers, one administrative person and one Poway Unified School District representative. A PUSD representative comes to all meetings since they want to be sure goals are being met and parents are happy since the district pays for all expenses related to schooling.
I asked the district representative how students usually move out of the non public setting and back into public school, wondering if it usually takes place at the beginning of the school year. She said they don't have many kids move back to public school. Calvin is a unique case since he has no learning disabilities and is so capable academically. It will be interesting to see how he progresses over the next couple of years. I assume he will attend this school for at least the next 2 years. At that point we have a lot of unknown since Dave finishes residency at that point and we may be moving. The school he is currently in has a sister program for middle school with some special needs kids and some main stream kids which serves as a good transition for kids who are getting ready for public school. . I hope that he would be ready for something like that in two years.
We have a long way to go with Calvin but hope that with continued progress in school he will continue to progress academically and will eventually be more healthy and appropriate socially as well.
And it is so nice to think that I probably won't have another IEP meeting for another year!!! :)
The first major and welcome difference between this meeting and other IEP meetings I have attended is that I got a paper copy of everything before I even showed up! For every single IEP I have had and I have been to a dozen at least, I have asked for a copy to read before the meeting. I got all kinds of crazy responses to this question such as, "well, it won't be done until right before the meeting so I won't have time to get it to you" to which I replied, "Email me a copy when you are done. Even if it is just a few hours before." This never happened. I showed up to every meeting previous to this date having no idea what goals would be proposed and what current levels would be. It was ridiculous. Enough ranting, back to the meeting....
We went over Calvin's current levels. For the most part he is at grade level. This in and of itself is kind of a miracle considering he hasn't had consistent schooling since mid-2nd grade. His behavior is difficult to say the least. Most of his trouble behavior comes when he is asked to do non-preferred tasks or something else he doesn't want to do. It is obvious to all that Calvin seeks to be in control of his environment and when he isn't in control he tries his best to regain control by causing enough trouble that those who are in control will give up and let him have his way. They are doing their best to set up a program for Calvin where he can have some control and yet be enticed to get some work done during the school day. The amount of individual attenion he is getting is amazing. At his school, there is a unique "program" for each student there so that it is suited to their needs.
Goals were proposed for the next year addressing Calvin's areas of academic weakness and of course, social skills which he is lacking. The goals are lofty, yet hopefully they are also attainable.
Another welcome difference between this and other IEP meetings is that there was some real conversation! This may sound kind of weird and I'm not sure best how to describe it except to say that at most IEP meetings there is the usual greeting and small talk before the meeting starts. Once the meeting begins the IEP is read over. If I ask any questions, they are always answered in a very business-like way and always using the IEP language which affords no room for practical inferences and common sense. Everything is always formal and careful since school districts are #1. careful not to give any services except those required by law and #2. do not want to put themselves in danger of giving any information which cannot be addressed within the limits of the IEP and therefore expose themselves to a lawsuit if something is discussed and not followed up within the IEP. The formality of the conversation within the IEP document makes it difficult to brainstorm ideas and discuss openly the real problems that are happening.
At our most recent IEP after reviewing the IEP I had several questions. These were addressed in a more normal flow of conversation with a good discussion ensuing. It was so refreshing to talk about concerns and to be able to ask "what do you think?" without receiving fake, guarded answers in return.
Dave's first and only question was "Do you think you can handle Calvin now that you have seen what he is really like? " To his relief the answer was and enthusiastic "YES!"
In attendance at the IEP meeting were 2 of Calvin's teachers, one administrative person and one Poway Unified School District representative. A PUSD representative comes to all meetings since they want to be sure goals are being met and parents are happy since the district pays for all expenses related to schooling.
I asked the district representative how students usually move out of the non public setting and back into public school, wondering if it usually takes place at the beginning of the school year. She said they don't have many kids move back to public school. Calvin is a unique case since he has no learning disabilities and is so capable academically. It will be interesting to see how he progresses over the next couple of years. I assume he will attend this school for at least the next 2 years. At that point we have a lot of unknown since Dave finishes residency at that point and we may be moving. The school he is currently in has a sister program for middle school with some special needs kids and some main stream kids which serves as a good transition for kids who are getting ready for public school. . I hope that he would be ready for something like that in two years.
We have a long way to go with Calvin but hope that with continued progress in school he will continue to progress academically and will eventually be more healthy and appropriate socially as well.
And it is so nice to think that I probably won't have another IEP meeting for another year!!! :)
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