Ever since we had our hearing we have been re-playing in our minds things we could have said better. Overall things went well and we feel good about it, which is great. One of the areas that we wish we could have been more clear on was actually the basics about epilepsy. Our expert witness jumped right in talking about traumatic brain injury and the judge had no idea how this related to epilepsy. However, it is key to understanding Calvin's condition....
So, here's a basic lesson on epilepsy. There is more to epilepsy than just seizures. Of course, seizures are 100% part of the disease and necessary for a diagnosis of epilepsy to be made. However, there is so much more.
Here are the 6 parts of the disease.
1. Seizures - there are many kinds. Grand mal seizures are the kind where people are shaking violently all over their body. There are mini- mal seizures, simple partial seizures, complex partial seizures (Calvin has these - they effect more than one part of the brain, involve body movements and loss of consciousness and no memory of the seizure when it is over). Some seizures the person loses consciousness, some the person does not.
2. Pre and post seizure activity. Before seizures some people experience auras - weird feelings, smells, or sensations. For some people the aura is hours. For others it is seconds. I met a girl who has an aura about 10 seconds before a grand mal seizure. For her it is just enough time (usually) to sit down or put down whatever she is holding so she doesn't get seriously injured during the seizure. I met another person who always gets sick and throws up before a seizure. Not everyone experiences auras before seizures. For the type of epilepsy Calvin has, sometimes the auras involve extreme mood and behavior problems. We are not sure if Calvin has these auras or not. He certainly has the extreme mood and behavior problems but we are not sure if they are auras.
After the seizure there is a post-ictal period, often involving the intense need for sleep. Seizures are very active and intense activity for the brain and the brain will need rest after a seizure. Calvin used to have a lot of episodes of pallor followed by deep sleep. He would fall asleep on the floor, at school, in the car, at the dinner table. He would just look at me and say, barely audible, "i'm tired" and then instantly go to sleep. We suspect looking back that these were seizures he was having that were not manifest in the usual way.
3. Sub clinical seizures - Seizures are intense activity in the brain of rapid firing of neurons. This can happen anywhere in the brain. Sometimes it will happen and there will be nothing on the outside that indicates the seizure is going on. If it is in the motor strip (the part of the brain controlling arm and leg movements) then that movement will be seen. But, what happens if it is in the part of the brain that controls smell, or rage, or vision? You could smells strange things, get super angry or see "things" .... Calvin has most definitely had sub clinical seizures. He may still be having them. It is hard to say.
4. Brain Damage. Seizures cause brain damage. Imagine that your neurons in your brain are like an electrical wire designed to carry a current. It can function properly for a LONG period of time, however if you over stimulate the wire, giving it too much voltage you can damage the wire or even cause it to burn out permanently. Translated to the brain cells, that means the repeated seizures along a certain pathway can kill the brain cells. Calvin's MRI shows evidence of brain damage in the area he had his seizures. Of note, his brain damage is more than likely what can account for a lot of his behavior and mood problems. I am sure you have heard of people who have stroke and then turn into a mean grumpy person. That is sort of what Calvin is like.
5. Medication. The medications that treat epilepsy are not without side effects. Since the epilepsy itself is over active neurons, the medication works to slow down the firing of those neurons. The problem is that slowing down the misfiring neurons with a medicine will also slow down the "normal neurons" so overall brain function is slowed. It is a bummer. No medication is without side effects. Many also effect mood, are tough on the stomach and have other undesirable effects. We have been lucky that our first medication has worked with Calvin and the side effects have been minimal. of course we can really see or measure how much it slows him down cognitively but it is nice that he isn't having other side effects on top of that.
6. Epilepsy is a progressive disease. It is not curable. It is treatable with medication in some cases. Often even after treatment is successful for a time there will be breakthrough seizures as the disease progresses. Part of the reason epilepsy is progressive is that the brain "remembers" the epileptic pathways so once you've had a seizure it is easier for you to have another. Think of learning an instrument like the piano. If you practice scales every day, eventually you will not even have to think. Your fingers (and brain) will just know what to do. Or, in a sport where you condition your muscles to kick, hit or shoot just perfectly. Likewise, the brain creates these pathways of rapid firing and the brain remembers and repeats them, often adding to them so that seizures get worse over time. That is why dr.s do their very best to stop seizures completely with medication. Once you have them, they will progress.
Monday, August 26, 2013
Wednesday, August 14, 2013
keeping it real
August is all about surviving. I have to say I am so thankful that so far the weather is lovely so I am at least not battling the heat. It is such a blessing that Calvin only has a 5 week summer break. He does so much better with school as part of his day and I do so much better when he is gone for a big portion of the day. Why? Calvin breaks things. He tore up two library books this week. He hits things and people. He is like a crazy dictator. The girls probably don't think it is that bad because I give up on chores and getting things done and just stick them in Dave's office and let them watch netflix so that they won't set off Calvin. Clare missed 2 days of piano last week b/c Calvin wouldn't let her practice. Some days I try to go out and do things b/c a lot of time s little fresh air and change of scenery helps us all out. But, on the other hand, when things go south and I am out, it is horrible and I am completely stuck. So for the most part we do not go anywhere or do anything. If I do go out, I know I will have to buy whatever Calvin wants or else he will either fall apart or start screaming profanity. It is expensive.
Yesterday Clare had piano lessons. It was a nice day so the windows were all open. I sat in the driveway with Lex, Calvin and Jo. Lex brought a couple of games to play (that's what we usually do while Clare is in lessons) and Calvin really wanted to play her game. She didn't want to have him play her game. He had his own game and we had played a round of his game first. Anyway, it led to lots of screaming the F word and him hitting lex. When Clare walked out of her lesson she said, "why was Calvin screaming the f word?" "Why was Lexey crying?" I am so thankful that for all but 4 of Clare's lessons, Calvin is at school so he doesn't have to sit there with me.
We recently read the story in 3 Nephi where Christ visits the Nephites and heals all of the sick. Clare said, "if we were there I would have taken Jo (who had a cold) " I said, "if I was there I would take Calvin to him." and Clare replied, "oh, because of his brain." It was interesting that Clare understood why I said that, but I also hope the know every day that Calvin is the way he is because of illness and that it is not normal and not okay for anyone to act like that normally. I have told the kids that Calvin has a spot in his brain that is damaged and that is why he gets so angry and has some problems. I think they sort of understand but it probably won't be 'til they are adults that the fully comprehend the situation. For them now, it is completely normal because whatever you grow up with you think is normal. Eventually they will look around and see that it is not normal. hopefully they are strong enough and wonderful enough to not be bitter about the situation and to have extra kindness and compassion instead. Dave said he had a companion on his mission who had a sweet down syndrome sibling and was super bitter about it and completely hated the kid. I have worried that the girls would be bitter about Calvin but I guess it isn't so much the situation as much as it is the heart that determines how one feels about things.
Jo, my 2 year old said, "F" this week. Calvin said, "what the..." and Jo filled in with "f". (and I don't mean the letter f. I mean the 4 letter word that starts with f)
The swearing has been pretty bad lately. When I was at the psychiatrist a couple of weeks ago he was asking how things are going in many aspects of life. I mentioned the swearing is pretty bad these days and he said, "you've just got to ignore it." I realize that swearing does not hurt anyone or anything. Obviously if I had to pick between him hitting, breaking and swearing, the swearing is the one that really is the least serious but it so bothers me. If I didn't have other young kids at home it would be easier to ignore. And if he didn't yell bad words in public it would be easier to ignore. It is embarrassing. And Calvin knows it is one of my buttons and he loves to push it.
For a few months we had a rule if he didn't swear all day he would get 30 minutes of screen time before bed. I'm not sure why that stopped working.
The girls go back to school in less than 2 weeks. Once they are back things are a little easier with just Calvin and Jo at home. Calvin is very sweet with Jo and they are about at the same pace. Both need lots of home time and snacks to keep afloat. The other girls have so much energy they get bored and bounce off the walls and tease and really could use more to do than we are generally up to.
Just documenting b/c I am told by our psychiatrist that things will get better. When they do, I hope to look back on this and say, "wow, those were tough times, I'm glad they are gone." In saying this I have to admit that things really could be worse. I really hope that I don't look back on this one day and say, "boy I had it easy back then, why was I complaining." Heaven help me if we get to that point.
Yesterday Clare had piano lessons. It was a nice day so the windows were all open. I sat in the driveway with Lex, Calvin and Jo. Lex brought a couple of games to play (that's what we usually do while Clare is in lessons) and Calvin really wanted to play her game. She didn't want to have him play her game. He had his own game and we had played a round of his game first. Anyway, it led to lots of screaming the F word and him hitting lex. When Clare walked out of her lesson she said, "why was Calvin screaming the f word?" "Why was Lexey crying?" I am so thankful that for all but 4 of Clare's lessons, Calvin is at school so he doesn't have to sit there with me.
We recently read the story in 3 Nephi where Christ visits the Nephites and heals all of the sick. Clare said, "if we were there I would have taken Jo (who had a cold) " I said, "if I was there I would take Calvin to him." and Clare replied, "oh, because of his brain." It was interesting that Clare understood why I said that, but I also hope the know every day that Calvin is the way he is because of illness and that it is not normal and not okay for anyone to act like that normally. I have told the kids that Calvin has a spot in his brain that is damaged and that is why he gets so angry and has some problems. I think they sort of understand but it probably won't be 'til they are adults that the fully comprehend the situation. For them now, it is completely normal because whatever you grow up with you think is normal. Eventually they will look around and see that it is not normal. hopefully they are strong enough and wonderful enough to not be bitter about the situation and to have extra kindness and compassion instead. Dave said he had a companion on his mission who had a sweet down syndrome sibling and was super bitter about it and completely hated the kid. I have worried that the girls would be bitter about Calvin but I guess it isn't so much the situation as much as it is the heart that determines how one feels about things.
Jo, my 2 year old said, "F" this week. Calvin said, "what the..." and Jo filled in with "f". (and I don't mean the letter f. I mean the 4 letter word that starts with f)
The swearing has been pretty bad lately. When I was at the psychiatrist a couple of weeks ago he was asking how things are going in many aspects of life. I mentioned the swearing is pretty bad these days and he said, "you've just got to ignore it." I realize that swearing does not hurt anyone or anything. Obviously if I had to pick between him hitting, breaking and swearing, the swearing is the one that really is the least serious but it so bothers me. If I didn't have other young kids at home it would be easier to ignore. And if he didn't yell bad words in public it would be easier to ignore. It is embarrassing. And Calvin knows it is one of my buttons and he loves to push it.
For a few months we had a rule if he didn't swear all day he would get 30 minutes of screen time before bed. I'm not sure why that stopped working.
The girls go back to school in less than 2 weeks. Once they are back things are a little easier with just Calvin and Jo at home. Calvin is very sweet with Jo and they are about at the same pace. Both need lots of home time and snacks to keep afloat. The other girls have so much energy they get bored and bounce off the walls and tease and really could use more to do than we are generally up to.
Just documenting b/c I am told by our psychiatrist that things will get better. When they do, I hope to look back on this and say, "wow, those were tough times, I'm glad they are gone." In saying this I have to admit that things really could be worse. I really hope that I don't look back on this one day and say, "boy I had it easy back then, why was I complaining." Heaven help me if we get to that point.
Monday, August 12, 2013
Sunday, August 11, 2013
feeling good today
This afternoon I took Calvin to a birthday party of one of his friends from school. It is always interesting going to events with kids from school for several reasons.
1. Unlike public school where all the neighborhood kids go to school together, kids from Calvin's school live all over the county. It was 30 minutes to get to this friends house today and in a part of town I have never been to before. Talking to other parents who were there, they were all from different parts of town and each of them probably came 30 minutes as well, but from all different directions.
2. As parents, we do not know the other kids at the school or the other parents. Kids arrive on buses and go to class. The environment at school is very controlled so even when I do stop by school I do not see many kids. Since kids take buses to school we never see the other parents at school. It is only at these rare social events that we see the other parents.
3. The nature of these special needs kids is that they aren't amazing communicators or reliable reporters on the events and details surrounding these friends and their families. I don't hear from Calvin about the ages, parents, families and home towns of his peers. Also, of course Calvin doesn't know details about diagnosis, treatment and other interesting facts about his peers.
4. not many play dates to speak of for many reasons. Distance between homes probably being biggest factor.
Diagnosis of kids that were there:
Autism, significant expressive language disorder
Aspergers, ADHD, ODD
bipolar, ADHD, ODD
Autism
Aspergers, ADHD
(Calvin: Personality Change, ADHD)
Did not talk to everyone there but these were the few I did talk to.
All the kids there have the school districts paying for the non - public school. Everyone but us had to hire an attorney or advocate to get the district to pay for school.
I enjoyed taking Calvin to the party. It was fun seeing his friends light up when he arrived. They were all thrilled to see each other. They swam for a little while and then had cake and hung out for a bit. The kids have been out of school for about 2 weeks and haven't seen each other since then. It was also nice riding in the car with Calvin. On the way there he was kind enough to choose Sunday music to listen to. on the way home he was kind enough not to blow his party whistle and just talked to me a little bit. Most car rides are kinda stressful, usually because the girls are singing or in his seat or something. This was nice.
It was interesting talking to the parents. These parents have been through so much. One mother recently had to place her son in a group home b/c he was so violent with her at home (he is 11 years old) . It was heartbreaking to hear about this. Another mother had to place her daughter in an inpatient mental hospital for a few weeks to get her stable on medications (when she was only 3. Things are better now and they are very successful with the medication they are on). One mother got placement at the non-public school after her son was physically abused in his district special education classroom. The lives of these families with special needs children is stressful, intense and heartbreaking at times. It is hard work. While there are many similarities between children, dealing with behavior problems, communication issues, school placement, regional center services, insurance battles, extended family ... each situation is so unique and personal and each child is one of a kind.
One of my favorite people I met today was the mother of a 13 year old boy. He is most definitely autistic but I never talked to her about diagnosis or treatment or anything. He has a sweet disposition. She was a good mother. Had a great sense of humor about things and was very resourceful and knowledgeable. She is also a great mother bear, obviously an advocate for her child and making sure things are right with him. Turns out she is also an aeronautical engineer. Brilliant in math and sciences. Anyway, always neat to meet new people.
One of the other moms is now an educational advocate, helping other families to get the services they need for their special needs children. I have noticed as I've talked to advocates and attorneys in the field that many became interested in a career in advocacy because they have a special needs child.
As a side, every child there is a client of the Regional Center except Calvin (regional center provides services for people with developmental disabilities including autism, epilepsy, down syndrome, cerebral palsy and mental retardation). We are in round three of our fight to get Calvin accepted at regional center. We have appealed twice and now we go before a judge at a fair hearing where the final decision will be made. We have been working hard to try and get ready for this. I will write more after it is over but don't want to have too much on the open internet until it is done.
1. Unlike public school where all the neighborhood kids go to school together, kids from Calvin's school live all over the county. It was 30 minutes to get to this friends house today and in a part of town I have never been to before. Talking to other parents who were there, they were all from different parts of town and each of them probably came 30 minutes as well, but from all different directions.
2. As parents, we do not know the other kids at the school or the other parents. Kids arrive on buses and go to class. The environment at school is very controlled so even when I do stop by school I do not see many kids. Since kids take buses to school we never see the other parents at school. It is only at these rare social events that we see the other parents.
3. The nature of these special needs kids is that they aren't amazing communicators or reliable reporters on the events and details surrounding these friends and their families. I don't hear from Calvin about the ages, parents, families and home towns of his peers. Also, of course Calvin doesn't know details about diagnosis, treatment and other interesting facts about his peers.
4. not many play dates to speak of for many reasons. Distance between homes probably being biggest factor.
Diagnosis of kids that were there:
Autism, significant expressive language disorder
Aspergers, ADHD, ODD
bipolar, ADHD, ODD
Autism
Aspergers, ADHD
(Calvin: Personality Change, ADHD)
Did not talk to everyone there but these were the few I did talk to.
All the kids there have the school districts paying for the non - public school. Everyone but us had to hire an attorney or advocate to get the district to pay for school.
I enjoyed taking Calvin to the party. It was fun seeing his friends light up when he arrived. They were all thrilled to see each other. They swam for a little while and then had cake and hung out for a bit. The kids have been out of school for about 2 weeks and haven't seen each other since then. It was also nice riding in the car with Calvin. On the way there he was kind enough to choose Sunday music to listen to. on the way home he was kind enough not to blow his party whistle and just talked to me a little bit. Most car rides are kinda stressful, usually because the girls are singing or in his seat or something. This was nice.
It was interesting talking to the parents. These parents have been through so much. One mother recently had to place her son in a group home b/c he was so violent with her at home (he is 11 years old) . It was heartbreaking to hear about this. Another mother had to place her daughter in an inpatient mental hospital for a few weeks to get her stable on medications (when she was only 3. Things are better now and they are very successful with the medication they are on). One mother got placement at the non-public school after her son was physically abused in his district special education classroom. The lives of these families with special needs children is stressful, intense and heartbreaking at times. It is hard work. While there are many similarities between children, dealing with behavior problems, communication issues, school placement, regional center services, insurance battles, extended family ... each situation is so unique and personal and each child is one of a kind.
One of my favorite people I met today was the mother of a 13 year old boy. He is most definitely autistic but I never talked to her about diagnosis or treatment or anything. He has a sweet disposition. She was a good mother. Had a great sense of humor about things and was very resourceful and knowledgeable. She is also a great mother bear, obviously an advocate for her child and making sure things are right with him. Turns out she is also an aeronautical engineer. Brilliant in math and sciences. Anyway, always neat to meet new people.
One of the other moms is now an educational advocate, helping other families to get the services they need for their special needs children. I have noticed as I've talked to advocates and attorneys in the field that many became interested in a career in advocacy because they have a special needs child.
As a side, every child there is a client of the Regional Center except Calvin (regional center provides services for people with developmental disabilities including autism, epilepsy, down syndrome, cerebral palsy and mental retardation). We are in round three of our fight to get Calvin accepted at regional center. We have appealed twice and now we go before a judge at a fair hearing where the final decision will be made. We have been working hard to try and get ready for this. I will write more after it is over but don't want to have too much on the open internet until it is done.
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