After 10 days with both the Seroquel and the Risperdal, we're not seeing any improvement. The psychiatrist wants us to stop on of the Ap's - I suggesting stopping the Seroquel since that causes him to overeat and to be sleepy. Happily, she agreed. She wants to double the Risperdal dose and spread that out over the day and also keep going up on the Lamictil (the mood stablizer). I guess that's the plan.
I confess I was hoping for something to work a little faster.
James is also is rare form and is almost more exhausting than Blake. With Blake, it's opposition, negativity, hyperactivity (lots of movement, lots of noise, extreme executive functioning issues, etc.). With James, it's emotional over-reactions, whining, frequent spills, accidents, things that need my interventions, high demand for attention and zero impulse control.
At least his night terrors are better. I had been giving him Clonidine to help with sleep since the Ritalin was making it hard to settle at night. He was having severe night terrors every single night. I have now switched to a 1/2 a Benedral and that seems to do the trick. Helps him get to sleep and he has not had one night terror on it.
We spent the past 5 days in Las Vegas. We went for Thanksgiving vacation and actually had a nice time. I was very hesitant to go, but told myself that we have to try. We can't always stay home because it's easier. All the kids really enjoyed themselves and mom and dad got to have some fun too!
Fun at Disneyland
Sunday, November 27, 2011
Thursday, November 17, 2011
Short, but oh so SWEET
The peace lasted for about 2 days. On day 3, Blake went back to pretty much the same as before. Only, he was slightly less aggressive. The hyperactivity, the shrieking/screaming/yelling, ignoring us, ODD symptoms, the constant trying to get a reaction from his siblings...all that came back.
We had to cut the Risperdal dose down from the nausea/vomiting, but a week later, when it was to the same dose as before, we still weren't seeing a difference. The Psychiatrist wanted us to keep it at that level and see if it didn't get better. Another week later and it still had not made a difference. I spoke to the Psychiatrist yesterday, and we discussed adding back the Seroquel to see if the combination was what had worked for him for the 2 days of magic. (He was coming off the Seroquel, which he had been on for 10 days without any improvement in symptoms when we started Risperdal).
So now, he's on 2 Anti-Psychotics which scares the crap out of me. But you know what? Blake says those 2 days were the best days of his life and so we will not stop until he finds that peace again. He started on the Seroquel this morning and the school called by 9:30am. He was exhausted. I went and got him and he has been doing fairly well all day. Just sleepy. I know that side effect will go away in a couple of days.
The battle with the school continues. I am happy to have an advocate, but frustrated at the long waiting period (60 days - we still have 40 more) for the IEP, because Blake really needs certain accommodations NOW. It is making him more frustrated to be held to these standards that make it so that his best is still not good enough. The advocate suggested I write a letter to the school and request an SST to get some help for him now. I started by saying that "I recognize that we have an IEP meeting sometime in the near future. However, as it won't be held until after the first of the year, I am requesting an SST to explore and secure accommodations that Blake very much needs in the interim."
And then I listed our suggestions - Minimal homework tasks, extended time to complete tests/quizzes, shortened work if needed, prompts to refocus, prompts to turn in work, prompts to bring required materials home, movement breaks in class, support during group activities (reminders as to how to work in a collaborative team, how to negotiate, compromise, etc.), Support during placing for group activities (Not placing him with classmates who he doesn't work well with), praise and encouragement, and assistance with organization as needed.
I hope this works. On one hand, I guess I understand the need to demonstrate his deficits and lagging skills in his classwork, but on the other hand, I hate for him to be frustrated and to feel like "Why even bother trying? It won't be good enough.". I feel like the teacher should be prompting him to do the above things, like turn in his work, especially when I have personally gone to her and she knows he needs help with things involving executive functioning. The school he is at is so wonderful in so many other ways. There is such a nice community there, lots of caring parents and passionate staff. We are new to the school, so I don't have a really good feel for everyone. But for now, I want to work with them to get what Blake needs. I don't want to jump ship and start yet another school. The school has great stuff; camp outs, hikes, monthly field trips, conflict resolution circle, a huge environmental program, healthy lunch program, and a TON of hands on projects and collaborative groups (hence those needed accommodations for Blake!).
Just one teacher not willing to go out of her way until a piece of paper tells her she must.
We had to cut the Risperdal dose down from the nausea/vomiting, but a week later, when it was to the same dose as before, we still weren't seeing a difference. The Psychiatrist wanted us to keep it at that level and see if it didn't get better. Another week later and it still had not made a difference. I spoke to the Psychiatrist yesterday, and we discussed adding back the Seroquel to see if the combination was what had worked for him for the 2 days of magic. (He was coming off the Seroquel, which he had been on for 10 days without any improvement in symptoms when we started Risperdal).
So now, he's on 2 Anti-Psychotics which scares the crap out of me. But you know what? Blake says those 2 days were the best days of his life and so we will not stop until he finds that peace again. He started on the Seroquel this morning and the school called by 9:30am. He was exhausted. I went and got him and he has been doing fairly well all day. Just sleepy. I know that side effect will go away in a couple of days.
The battle with the school continues. I am happy to have an advocate, but frustrated at the long waiting period (60 days - we still have 40 more) for the IEP, because Blake really needs certain accommodations NOW. It is making him more frustrated to be held to these standards that make it so that his best is still not good enough. The advocate suggested I write a letter to the school and request an SST to get some help for him now. I started by saying that "I recognize that we have an IEP meeting sometime in the near future. However, as it won't be held until after the first of the year, I am requesting an SST to explore and secure accommodations that Blake very much needs in the interim."
And then I listed our suggestions - Minimal homework tasks, extended time to complete tests/quizzes, shortened work if needed, prompts to refocus, prompts to turn in work, prompts to bring required materials home, movement breaks in class, support during group activities (reminders as to how to work in a collaborative team, how to negotiate, compromise, etc.), Support during placing for group activities (Not placing him with classmates who he doesn't work well with), praise and encouragement, and assistance with organization as needed.
I hope this works. On one hand, I guess I understand the need to demonstrate his deficits and lagging skills in his classwork, but on the other hand, I hate for him to be frustrated and to feel like "Why even bother trying? It won't be good enough.". I feel like the teacher should be prompting him to do the above things, like turn in his work, especially when I have personally gone to her and she knows he needs help with things involving executive functioning. The school he is at is so wonderful in so many other ways. There is such a nice community there, lots of caring parents and passionate staff. We are new to the school, so I don't have a really good feel for everyone. But for now, I want to work with them to get what Blake needs. I don't want to jump ship and start yet another school. The school has great stuff; camp outs, hikes, monthly field trips, conflict resolution circle, a huge environmental program, healthy lunch program, and a TON of hands on projects and collaborative groups (hence those needed accommodations for Blake!).
Just one teacher not willing to go out of her way until a piece of paper tells her she must.
Monday, October 31, 2011
Here comes the sun
It's really wonderful to see how much the Risperdal is helping Blake. Since it was causing some nausea and vomiting, we lowered the dose by more than half. I can tell he will need more, since there is some breakthrough of old behaviors and inflexibility, but we have to go slow to avoid the nausea.
But even still, it is amazing to see him...the real him, shining through. He doesn't pick fights, argue incessantly, say no to everything, get super out of control hyper, run and scream through the house, shreik and leap around. There was always a level of chaos in the house and to have the chaos gone...well it's peaceful. Peace. There is peace in my house. It feels so good. I can even feel some of my stress melting away.
Most importantly of all, he is happy. He has said lots of times how great he feels. That is music to my ears. In the end, that is all us parents ever want.
I am trying to just take everything as it comes and not get carried away with pushing him to go too fast. And I am trying to control my mind from running away on me and planning his whole future. :) I am doing a good job so far, I think, of being gracious, loving and full of praise and encouragement. It is pretty easy to do that though! I missed this child I have seen the past three days. It's so good to have him back.
But even still, it is amazing to see him...the real him, shining through. He doesn't pick fights, argue incessantly, say no to everything, get super out of control hyper, run and scream through the house, shreik and leap around. There was always a level of chaos in the house and to have the chaos gone...well it's peaceful. Peace. There is peace in my house. It feels so good. I can even feel some of my stress melting away.
Most importantly of all, he is happy. He has said lots of times how great he feels. That is music to my ears. In the end, that is all us parents ever want.
I am trying to just take everything as it comes and not get carried away with pushing him to go too fast. And I am trying to control my mind from running away on me and planning his whole future. :) I am doing a good job so far, I think, of being gracious, loving and full of praise and encouragement. It is pretty easy to do that though! I missed this child I have seen the past three days. It's so good to have him back.
Saturday, October 29, 2011
Keep Calm and Carry On
Things have been bad. Really bad. Blake's mood and irritability went though the roof after we retried Concerta (a stimulant). Dr. (and I) both thought since the Lamactil (a mood stabilizer) was at a therapeutic dose, that perhaps he wouldn't have the negative reactions. Nope, we were wrong. After a wonderful 2 weeks, he became increasingly aggressive and oppositional. We stopped the Concerta, but his mood still has not returned to normal and it's been 5 weeks.
He started at one school, and 3 weeks in, a spot finally became available at James' charter school. This is the school that I had desperately wanted both boys at. It's a K-8 charter focused on "whole child" education. They teach conflict resolution, the staff respect the children, work out alternative solutions and foster community and care for the earth. It seemed perfect.
So, Blake switched schools and right away had issues another student and his friends. He quickly alienated several kids and didn't have any friends. His second week there, we stopped the Concerta. My mom came the next week and though, of course, it was wonderful to see her, it added a level of stress in the house. Blake's mood became increasingly oppositional, He was acting defiant, being sneaky, telling lies, his whole executive functioning deteriorated to the point that was was forgetting everything, even to shut the car door behind him. He was physically attacking James at the slightest provocation. While my mom was visiting, Blake blew up at me because I told him his friend (our next door neighbor) had to go home. We were out in the backyard and he picked up a foam covered plastic bat and came at me, hitting me as hard as he could. It was very violent and all right in front of my mom. I know her heart was breaking seeing it and that made my pain so much deeper.
After that happened, Blake wanted to run away and began packing. We calmed him down and he settled for the night. The next morning, my mom was leaving and I planned on dropping the boys off at school and then taking my mom to the airport. Blake was obsessing on running away still, but now he was making a plan to run away from school with James. I called the school, asked that they keep an extra close eye on the boys and crossed my fingers that the day would be uneventful. I dropped off my mom and we had a very sad and tearful goodbye.
The minute I picked up the boys from school that afternoon, Blake was still obsessing. As soon as we got home, he packed his things and began walking down the street. James went with him. I called the police because there was no way I was going to be able to get them back home safely and keep our 2 year old safe. My husband got home, went and forced the boys into his car and brought them home at the same time the police arrived. The police gave both boys a very stern talking to and talked about the danger on the street. They also called the Children's Crisis Center to come out.
A wonderful therapist came. He has a lot of experience with kids like Blake and said right away that he though we were indeed looking at bipolar and that starting him on an anti-psychotic would be the best course of action. I called Blake's psychiatrist and she agreed and we began Seroquel the following day.
It was shocking how his mood shift continued. He was sliding so far down that I couldn't even see my son though all the chaos. School was a disaster, he was walking out of class without permission and they had to call the office several times to send people out to look for him. The change in the quality of his schoolwork was huge. You could see that there was so much confusion and "static" going on in his head.
At this point, he was 3 weeks at his new school. He had no friends. He was barely getting by.
I called an emergency meeting with his teachers and explained what was going on and how they could help. They seemed reluctant to do anything for him. I didn't have the strength or energy to take on the school. Not with dealing with the daily challenges of having an unstable child and also dealing with the new (and scary medicines). I called an advocate and met with her that week. She is wonderful and I am so glad to have someone in our corner.
The therapist from the children's crisis response team is also visiting us weekly to check on Blake's progress and to help in any way he can. I really like him and feel very fortunate that he has so much knowledge and experience. We tried the Seroquel for two weeks and didn't see any difference, so we just switched to Risperdal three days ago. Unfortunately, that is giving Blake the terrible side effect of vomiting. We are trying to reduce the dose and move up more slowly. The upside is that as of yesterday, we actually saw a pretty dramatic improvement in his mood. I have hope.
He started at one school, and 3 weeks in, a spot finally became available at James' charter school. This is the school that I had desperately wanted both boys at. It's a K-8 charter focused on "whole child" education. They teach conflict resolution, the staff respect the children, work out alternative solutions and foster community and care for the earth. It seemed perfect.
So, Blake switched schools and right away had issues another student and his friends. He quickly alienated several kids and didn't have any friends. His second week there, we stopped the Concerta. My mom came the next week and though, of course, it was wonderful to see her, it added a level of stress in the house. Blake's mood became increasingly oppositional, He was acting defiant, being sneaky, telling lies, his whole executive functioning deteriorated to the point that was was forgetting everything, even to shut the car door behind him. He was physically attacking James at the slightest provocation. While my mom was visiting, Blake blew up at me because I told him his friend (our next door neighbor) had to go home. We were out in the backyard and he picked up a foam covered plastic bat and came at me, hitting me as hard as he could. It was very violent and all right in front of my mom. I know her heart was breaking seeing it and that made my pain so much deeper.
After that happened, Blake wanted to run away and began packing. We calmed him down and he settled for the night. The next morning, my mom was leaving and I planned on dropping the boys off at school and then taking my mom to the airport. Blake was obsessing on running away still, but now he was making a plan to run away from school with James. I called the school, asked that they keep an extra close eye on the boys and crossed my fingers that the day would be uneventful. I dropped off my mom and we had a very sad and tearful goodbye.
The minute I picked up the boys from school that afternoon, Blake was still obsessing. As soon as we got home, he packed his things and began walking down the street. James went with him. I called the police because there was no way I was going to be able to get them back home safely and keep our 2 year old safe. My husband got home, went and forced the boys into his car and brought them home at the same time the police arrived. The police gave both boys a very stern talking to and talked about the danger on the street. They also called the Children's Crisis Center to come out.
A wonderful therapist came. He has a lot of experience with kids like Blake and said right away that he though we were indeed looking at bipolar and that starting him on an anti-psychotic would be the best course of action. I called Blake's psychiatrist and she agreed and we began Seroquel the following day.
It was shocking how his mood shift continued. He was sliding so far down that I couldn't even see my son though all the chaos. School was a disaster, he was walking out of class without permission and they had to call the office several times to send people out to look for him. The change in the quality of his schoolwork was huge. You could see that there was so much confusion and "static" going on in his head.
At this point, he was 3 weeks at his new school. He had no friends. He was barely getting by.
I called an emergency meeting with his teachers and explained what was going on and how they could help. They seemed reluctant to do anything for him. I didn't have the strength or energy to take on the school. Not with dealing with the daily challenges of having an unstable child and also dealing with the new (and scary medicines). I called an advocate and met with her that week. She is wonderful and I am so glad to have someone in our corner.
The therapist from the children's crisis response team is also visiting us weekly to check on Blake's progress and to help in any way he can. I really like him and feel very fortunate that he has so much knowledge and experience. We tried the Seroquel for two weeks and didn't see any difference, so we just switched to Risperdal three days ago. Unfortunately, that is giving Blake the terrible side effect of vomiting. We are trying to reduce the dose and move up more slowly. The upside is that as of yesterday, we actually saw a pretty dramatic improvement in his mood. I have hope.
Thursday, August 4, 2011
Article on the front page of Yahoo
http://news.yahoo.com/more-children-hospitalized-mental-illness-035657150.html
"Although there have been concerns about over diagnosis of bipolar disorder and other mental problems among children, Blader said that was unlikely to be hiking the rates since hospitalizations are based on whether or not people are considered a danger to themselves or others, not psychiatric labels."
But here is the hitch - More Dx's means more prescribed meds and those meds (especially Stimulants and SSRI's that are being given to an increasing number of pre-pubescent children) have side effects that are frequently landing these kids in the psych hospitals.
"Although there have been concerns about over diagnosis of bipolar disorder and other mental problems among children, Blader said that was unlikely to be hiking the rates since hospitalizations are based on whether or not people are considered a danger to themselves or others, not psychiatric labels."
But here is the hitch - More Dx's means more prescribed meds and those meds (especially Stimulants and SSRI's that are being given to an increasing number of pre-pubescent children) have side effects that are frequently landing these kids in the psych hospitals.
Tuesday, June 21, 2011
Neuro-Psych Feedback Meeting
The long awaited feedback meeting arrived today. Blake has been to UCLA three times this month for very comprehensive neuro-psych testing and my husband and I met with the doctors today to discuss the results and their recommendations.
The Doctor said first that he is a very bright child and that educationally speaking, they did not see any concerns, other than his fine motor control (they recommended OT for that) and his ADHD. They saw his ADHD symptoms (lack of sustained focus, need for movement, impulsivity) and agreed that he had ADHD.
Primarily, they believe he has a lot of anxiety and some depression. They do not believe he has bipolar mainly because he does not experience the sleep disturbances and the grandiosity. They recommended cognitive behavior therapy to help him reframe his thinking and said that they believed his anxiety triggered a lot of the opposition.
They recommended that Blake continue taking the mood stabilizer (Lamactil) but agreed with me, that it was probably best to just do the Lamactil and add the Abilify later if needed once the Lamactil was at a therapeutic dose. They also recommended that we consider medicine for his adhd once his mood was stabilized. They agreed that Blake having the in-home therapy would very beneficial to both him and to our family. Lastly, the main psychologist told us that she felt very optimistic about Blake's future.
I left feeling good about everything, but also a little confused. My head has been swimming with more and more questions as I absorb all of the information. The doctors will complete the written report and mail it to me along with their specific suggestions for the cognitive behavior therapy so that we can share that with the in-home therapist.
I have been reading the book, "Lost at School" by Dr. Ross Green. http://www.amazon.com/Lost-School-Behavioral-Challenges-Falling/dp/1416572279/ref=sr_1_1?ie=UTF8&qid=1308706026&sr=8-1 Though I had read his most popular book, "The Explosive Child" years ago, This more recent book of his is truly revolutionary. His ideas about discipline and behavior are so dramatically different, but make perfect sense.
I was struck with many things, but one thing, especially, stands out to me from the book - "Diagnosis" isn't really all that important, it's the children's lagging skills that need our focus. And right now, that makes more sense then ever. It's a good feeling to be able to have some clear goals for Blake (based on his lagging skills) and to be working with a therapist to reach those goals.
Good day. Hope springs enternal, right?
The Doctor said first that he is a very bright child and that educationally speaking, they did not see any concerns, other than his fine motor control (they recommended OT for that) and his ADHD. They saw his ADHD symptoms (lack of sustained focus, need for movement, impulsivity) and agreed that he had ADHD.
Primarily, they believe he has a lot of anxiety and some depression. They do not believe he has bipolar mainly because he does not experience the sleep disturbances and the grandiosity. They recommended cognitive behavior therapy to help him reframe his thinking and said that they believed his anxiety triggered a lot of the opposition.
They recommended that Blake continue taking the mood stabilizer (Lamactil) but agreed with me, that it was probably best to just do the Lamactil and add the Abilify later if needed once the Lamactil was at a therapeutic dose. They also recommended that we consider medicine for his adhd once his mood was stabilized. They agreed that Blake having the in-home therapy would very beneficial to both him and to our family. Lastly, the main psychologist told us that she felt very optimistic about Blake's future.
I left feeling good about everything, but also a little confused. My head has been swimming with more and more questions as I absorb all of the information. The doctors will complete the written report and mail it to me along with their specific suggestions for the cognitive behavior therapy so that we can share that with the in-home therapist.
I have been reading the book, "Lost at School" by Dr. Ross Green. http://www.amazon.com/Lost-School-Behavioral-Challenges-Falling/dp/1416572279/ref=sr_1_1?ie=UTF8&qid=1308706026&sr=8-1 Though I had read his most popular book, "The Explosive Child" years ago, This more recent book of his is truly revolutionary. His ideas about discipline and behavior are so dramatically different, but make perfect sense.
I was struck with many things, but one thing, especially, stands out to me from the book - "Diagnosis" isn't really all that important, it's the children's lagging skills that need our focus. And right now, that makes more sense then ever. It's a good feeling to be able to have some clear goals for Blake (based on his lagging skills) and to be working with a therapist to reach those goals.
Good day. Hope springs enternal, right?
Thursday, June 9, 2011
Hanging in there
Things are going fairly smoothly lately. No major rages in about 2 weeks. Blake is still really obsessing on Pokemon (on his Nintendo DS), but has done well with me setting a limit of 2-1/2 hrs./day. Which even looking at that number, seems like WAY too much. But the thing is, I can see that it helps him cope and channel excess energy, so I compromise.
Blake has done his first day of testing at UCLA and goes in on Monday the 13th for the other half. He is being a really good sport about it and we've had fun driving the 405 in bumper to bumper traffic. We actually have! I put on some music, we put the windows down and cruise (at 15 mph, but still!). It's been nice having it be just he and I. We don't get to do that enough. We were talking about the students at UCLA and Blake informed me that going to UCLA was his dream. He could do it too. I know he could. He has his challenges, and they can be huge at times, but he has so many amazing gifts as well. I pray that his challenges don't hold him back from his dreams and most days, I feel optimistic about his future.
Blake had a major accomplishment today. At a school performance, (with lots of students and parents watching) Blake played three songs on his trombone with the school's elementary band - made up of 6 kids. He did so well! He says he wasn't even nervous, which is surprising. He has had issues in the past with performing in front of a lot of people. Though, I believe that was when he was on the stimulants and they all gave him all sorts of anxiety. Anyhow, today he did so great and he also smiled a lot which is the best thing in the world to see.
James has his first OT therapy tomorrow. I hope she is good at motivating resistant kids because when James gets frustrated, he is D-O-N-E and I've found that if I push, he gets very angry and emotional. So, fingers crossed she's a good one!
I am enjoying the last days of having the boys in school. Even though I am busy running to and from near daily appointments of various doctors and therapists, it's still manageable with only one of the boys and the baby. But when it's the 3 of them, the boys get each other going, get loud, get rambunctious and silly, bug the baby, fight with one another....
Oh summer. Must you come so soon?
Blake has done his first day of testing at UCLA and goes in on Monday the 13th for the other half. He is being a really good sport about it and we've had fun driving the 405 in bumper to bumper traffic. We actually have! I put on some music, we put the windows down and cruise (at 15 mph, but still!). It's been nice having it be just he and I. We don't get to do that enough. We were talking about the students at UCLA and Blake informed me that going to UCLA was his dream. He could do it too. I know he could. He has his challenges, and they can be huge at times, but he has so many amazing gifts as well. I pray that his challenges don't hold him back from his dreams and most days, I feel optimistic about his future.
Blake had a major accomplishment today. At a school performance, (with lots of students and parents watching) Blake played three songs on his trombone with the school's elementary band - made up of 6 kids. He did so well! He says he wasn't even nervous, which is surprising. He has had issues in the past with performing in front of a lot of people. Though, I believe that was when he was on the stimulants and they all gave him all sorts of anxiety. Anyhow, today he did so great and he also smiled a lot which is the best thing in the world to see.
James has his first OT therapy tomorrow. I hope she is good at motivating resistant kids because when James gets frustrated, he is D-O-N-E and I've found that if I push, he gets very angry and emotional. So, fingers crossed she's a good one!
I am enjoying the last days of having the boys in school. Even though I am busy running to and from near daily appointments of various doctors and therapists, it's still manageable with only one of the boys and the baby. But when it's the 3 of them, the boys get each other going, get loud, get rambunctious and silly, bug the baby, fight with one another....
Oh summer. Must you come so soon?
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