I was just thinking today about how much Autism Spectrum behavior I see in Blake - singing songs and substituting words (seems like he's trying to be annoying, but I don't think he has much control), MAJOR ADHD symptoms, often unable to sit still, doesn't ride a bike well (didn't take off training wheels until age 9), can't coordinate pumping legs on swings, rages, argues incessantly, BUT BUT BUT he is social, even seeks out people, he generally acts appropriately about other kids. He doesn't stand out at all as being different, maybe a bit bossy but nothing major. He doesn't have the flat speech, and the general lack of coordination. He is generally a skilled athlete (except for biking and swinging!) Am I crazy for thinking it could be Aspergers? He does stim. Both finger movements and constantly throwing things up in the air and catching them. He has a lot of sensory issues, and struggles with fine motor; though I know both are seen in both Bipolar and ASD.
Having an HMO like Kaiser doesn't exactly give me access to the type of cutting edge doctor that will tell the difference. I want them to pay for out of network evaluation, but don't even know where to begin. Ultimately, I'd like OT for sensory seeking and fine motor and PT for the swinging and other movement. Also having some in-home therapy services would be fantastic. I don't even know where to begin to get these type of services.
Fun at Disneyland
Thursday, December 29, 2011
Saturday, December 24, 2011
Losing Faith in Conventional Medicine
I have made a fairly dramatic decision in Blake's treatment plan. I'm still unsure of the Bipolar Dx, (sometimes, I lean more towards Pdd-nos) but I know for sure that he had severe and dramatic reactions to both the ssri Zoloft and all stimulants. Excepting those reactions, Blake still has many areas that he needs to grow. His ADHD and ODD are still difficult, though the rages and irrational thinking (ie. "I'm going to run away because I'm sick of people telling me what to do" and then *actually* running away) is thankfully gone - those seemed to be more the side effects from the SSRI's and stimulants. So, while, Blake was improving, I felt that the improvement was more from taking the stimulants away in October than from adding these Antipsychotics and Mood stabilizers.
Additionally, as we were upping the dose of Risperdal from 1.5 to 2 mg., poor Blakey peed the bed. That night, he also told me that he had been peeing "just a little tiny bit" in his pants. I felt so sad for him and explained not to worry, that it was the medicine and that we would lower the dose.
That day, I began to read more about treatment of mood disorders with micro-nutrients. I have always been open to alternative treatments, but carry a healthy dose of skepticism. But I read lot about it and the research behind it. And more importantly, I read the stories of people that it had worked for, not just on the company's webpage, but on other unbiased message boards. These nutrients, along with diet, and therapy is really and truly helping a lot of children. It seemed like an easy decision. Try these supplements and phase out the medicines. The conventional treatment will always be there if this alternative treatment doesn't work.
So we started EMPower on Thursday. This is his third day on it, but he is still on his full dose of Lamactil (275 mg) and a slightly lowered dose of the Risperdal (1mg). The support staff at Truehope (The makers of EMpower) want us to give him the Empower daily (along with an amino acid and a probiotic) and then call them when Blake starts to show changes. Apparently, the micro-nutrients make is so that the medicines are better metabolized and cause the meds to have a greater effect. So in a sense, they become over-medicated. That is the point that we will back the meds down.
I want this to work so badly for him. It has an 80-86% success rate, which gives me a lot of hope. I am proud of him for taking all these pills. He takes 2 pills before each meal, plus 5 pills THREE times a day, plus his regular meds, which is a grand total of 25 pills. What a champ.
Additionally, as we were upping the dose of Risperdal from 1.5 to 2 mg., poor Blakey peed the bed. That night, he also told me that he had been peeing "just a little tiny bit" in his pants. I felt so sad for him and explained not to worry, that it was the medicine and that we would lower the dose.
That day, I began to read more about treatment of mood disorders with micro-nutrients. I have always been open to alternative treatments, but carry a healthy dose of skepticism. But I read lot about it and the research behind it. And more importantly, I read the stories of people that it had worked for, not just on the company's webpage, but on other unbiased message boards. These nutrients, along with diet, and therapy is really and truly helping a lot of children. It seemed like an easy decision. Try these supplements and phase out the medicines. The conventional treatment will always be there if this alternative treatment doesn't work.
So we started EMPower on Thursday. This is his third day on it, but he is still on his full dose of Lamactil (275 mg) and a slightly lowered dose of the Risperdal (1mg). The support staff at Truehope (The makers of EMpower) want us to give him the Empower daily (along with an amino acid and a probiotic) and then call them when Blake starts to show changes. Apparently, the micro-nutrients make is so that the medicines are better metabolized and cause the meds to have a greater effect. So in a sense, they become over-medicated. That is the point that we will back the meds down.
I want this to work so badly for him. It has an 80-86% success rate, which gives me a lot of hope. I am proud of him for taking all these pills. He takes 2 pills before each meal, plus 5 pills THREE times a day, plus his regular meds, which is a grand total of 25 pills. What a champ.
Sunday, November 27, 2011
Still trying.....
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!
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!
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.
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