In baseball, it's three strikes and you're out. In the legal system in many states, it's three strikes and you're out. When it comes to experimenting with Attention Deficit Disorder (ADD) medicines and our son's body, it will definitely be three strikes and you're out. Tonight we started our son on a new ADD medicine. I'm praying it does what it is intended to do without the negative side effects we have experienced with the two previous ADD medicines.
Coming to the decision to start our son on ADD medicines is not something we took lightly or casually. If you have read my posts in the past, or you know us personally, you know that my education and work background is in behavior management. For years, I told the neurology team that we wouldn't even consider medication. We would address our sons behaviors and our concerns through behavior management and diet. When things started getting more difficult and more challenging, I read and studied and researched. I talked to other people living through what we were experiencing, his teaching team, and his therapists. In general, I made a nuisance of myself, demanding that everyone do all that they could for my child without the benefit of medication. I was self righteous in my desire to stay medication free. It was my badge of honor that we were doing it by ourselves without medical intervention.
On the other hand, our son had an increasingly difficult time controlling his impulsiveness. He struggled to bring his energy level down to an appropriate level once over stimulated without an explosion to release the pent up energy. On top of that, his tendency to fixate inappropriately on ideas, behaviors, or objects seemed to be increasing. The combination of these behavioral tendencies was resulting in some pretty unsafe episodes that resulted in some real close calls when it came to his physical safety. It was also having an impact on his learning and his ability to learn. It was also having an impact on our family and our marriage.
The first two medicines that the neurology team tried were from the old tried and true stimulant family. They have the longest track record of use, with the most research backing their effectiveness. I know because I read, researched, and questioned until I was sure that they were a viable option. It was a logical place to start. Unfortunately, they only increased our son's tendency to fixate and his natural intensity. Our happy go lucky, love the world son began to show aggressive tendencies and angry outbursts that were not normal for him. His rain man, fixated behaviors seemed to amplify. He also seemed to be dropping a lot of weight. All told, he lost over ten pounds over the last month or two. In addition to these negative behavioral and physical side effects, the school was not seeing the desired increase in focus and productivity in school that they were hoping for. The call was made to take him off the medicines.
For the last two weeks, our son has been medicine free. He is a whirling swirling ping pong ball in a hurricane. He has torn the house apart as he bounces from one activity or idea or object to another. The idea of him completing a task or cleaning up after himself is laughable. It has been exhausting. It has also been enlightening. He has (for the most part) reverted to his old happy go lucky self. (Okay. Homework time is still a nightmare but isn't that normal for a lot of kids?) He is now eating CONSTANTLY. I hadn't realized how little he was eating until he regained his normal appetite. Sitting back (probably because I'm too tired to do anything else), it makes me very sad. It hurts to know how much he was changed by the chemicals in his body. It hurts to know that we risked the judgment and sensor of the "chemical free" parent crowd without the benefit of positive change. It hurts to know that we once again tried to make a change for the better for our son without the ability to effectively help him. Sometimes, it feels like we are beating our heads against the wall.
So tonight, we took our final leap of faith. We started him on another (and his last) ADD medicine. It is a non-stimulant called Tenex. He will take it at bedtime for four days since the primary side effect is sedation. (It's a sign that I'm a bad mother that when they told me that I actually smiled and thought "wouldn't that be nice." Just kidding. Sort of.) This weekend, he will switch to a morning and after school dosage time frame. We are all praying that it has the desired effect. I am keeping an open mind. Barring any significantly negative side effects, I am committing to at least a month or two to gauge it's effectiveness. I'm tuning out the negative voices in my head that tell me I'm a bad mother because I wasn't strong enough to make a difference for my son without medication. I will continue to read about dietary changes and behavior plans that may be beneficial if this current (and final) medicine doesn't work out. I will also continue to pray every single day that the Lord has a plan in mind for my little man; that he has him wrapped in His love; and guides us to make the choices that need to be made, even when they take us down paths that we would rather not travel. Please Lord watch over our boy and guide us.
Tuesday, January 28, 2014
Friday, January 17, 2014
Finding a Medical Baseline
If you've read my posts in the past, you know that after years of putting off the medicine option for our youngest son, we broke down and decided to go that route. It has not been going smoothly. We have now tried both families of the stimulant group of medicines. His teachers noticed little change at the bottom end of the dosage spectrum. Each time we have increased these bottom end dosages by only one or two increments, we have experienced some pretty negative side effects. Those side effects have resulted in a removal from the current medicine and a new consultation to evaluate our options. At the last appointment, they stated that if he doesn't do well with this current medication, we will need to re-evaluate and move to a completely different family of medicines. It looks like that's what we are going to be doing.
The stimulants seem to be doing the opposite of what they should be doing. In a child with Attention Deficit Disorder (ADD), they can have a sedative like effect that helps to slow the brain down to allow for better processing and a reduction in impulsiveness. According to his teachers, they have been experiencing an increase in his chattiness; impulsive desire to be up and moving and out of his seat; and hyper awareness of everything going on around him. Because his current medicine is a 30/70 release dosage, they should see increased focus and decreased impulsiveness as the school day progresses. This medicine releases 30% of its dosage immediately. The remaining 70% of the dosage is released throughout the day. This should translate into decreased impulsiveness and increased focus as the school day progresses. According to the feedback from his teaching team, the opposite is occurring.
In the evenings, we have been experiencing what they refer to as "rebound behaviors". As the evenings progress and the medicine begins to withdraw from his system, he becomes very intense and edgy. His tendency to fixate on conversations or ideas or activities intensifies. We have seen these type of behaviors displayed in many different areas. His fixated behavior has even increased to such a level that we have had to take his Kindle away from him. When we attempt to have him put it away for supper, or homework, or the evening, he has an absolute full blown "Rainman" style meltdown. We attempted to address this by setting up time limits on the Kindle through their "Freetime" option that allowed us to limit its usage to 30 minutes. After that time, the Kindle would shut down and become unusable. This seemed to work fine on the weekends when we don't give him his medicine. (We have only been administering the meds on school days.) Unfortunately, the same cannot be said for school nights when he has had his medicine.
If school had been experiencing increased focus and decreased impulsivity, we would have figured out a way to make it work. Because they have not, we are again going to remove him from his current medication and consult with his neurological team. Because the other families of medication require our son to be able to swallow pills, we have started trying to teach him the process. Like most physically based activities, it is a process. We are practicing with mini M&Ms. When he can successfully swallow those, we will progress to swallowing regular size M&Ms. I feel like this is their last opportunity to find the right medication for our son. He has lost ten pounds over the last two months. I feel as if we are experimenting with his little body. The process has me very frustrated and heartsick.
After discussing our options, my husband and I just don't know what else to do. His aunt had recently mentioned a special diet that one of her patients utilized successfully with her own children. Do we try something like that? We already closely monitor our children's diet by eliminating as much sugar, caffeine, and red dye as possible. We haven't tried a specific ADD diet though. At this point, it feels like one more dead end we just don't have the energy to go down.
Although we are frustrated with the process, there have been blessings. Through the time that we have been trying to establish a baseline for his medication, his normal winter health issues have not developed. Usually during this time of year, he has developed an asthma flair that requires round the clock breathing treatments; several prednisone boosts; and on going rounds of antibiotics. So far this year, we have been blessed to avoid that. It is a blessing. I'm not sure we could have dealt with his health issues on top of his learning and behavior issues. Sometimes it is the little things that help keep life in perspective. We are grateful for those little things. Some days, it makes all the difference.
The stimulants seem to be doing the opposite of what they should be doing. In a child with Attention Deficit Disorder (ADD), they can have a sedative like effect that helps to slow the brain down to allow for better processing and a reduction in impulsiveness. According to his teachers, they have been experiencing an increase in his chattiness; impulsive desire to be up and moving and out of his seat; and hyper awareness of everything going on around him. Because his current medicine is a 30/70 release dosage, they should see increased focus and decreased impulsiveness as the school day progresses. This medicine releases 30% of its dosage immediately. The remaining 70% of the dosage is released throughout the day. This should translate into decreased impulsiveness and increased focus as the school day progresses. According to the feedback from his teaching team, the opposite is occurring.
In the evenings, we have been experiencing what they refer to as "rebound behaviors". As the evenings progress and the medicine begins to withdraw from his system, he becomes very intense and edgy. His tendency to fixate on conversations or ideas or activities intensifies. We have seen these type of behaviors displayed in many different areas. His fixated behavior has even increased to such a level that we have had to take his Kindle away from him. When we attempt to have him put it away for supper, or homework, or the evening, he has an absolute full blown "Rainman" style meltdown. We attempted to address this by setting up time limits on the Kindle through their "Freetime" option that allowed us to limit its usage to 30 minutes. After that time, the Kindle would shut down and become unusable. This seemed to work fine on the weekends when we don't give him his medicine. (We have only been administering the meds on school days.) Unfortunately, the same cannot be said for school nights when he has had his medicine.
If school had been experiencing increased focus and decreased impulsivity, we would have figured out a way to make it work. Because they have not, we are again going to remove him from his current medication and consult with his neurological team. Because the other families of medication require our son to be able to swallow pills, we have started trying to teach him the process. Like most physically based activities, it is a process. We are practicing with mini M&Ms. When he can successfully swallow those, we will progress to swallowing regular size M&Ms. I feel like this is their last opportunity to find the right medication for our son. He has lost ten pounds over the last two months. I feel as if we are experimenting with his little body. The process has me very frustrated and heartsick.
After discussing our options, my husband and I just don't know what else to do. His aunt had recently mentioned a special diet that one of her patients utilized successfully with her own children. Do we try something like that? We already closely monitor our children's diet by eliminating as much sugar, caffeine, and red dye as possible. We haven't tried a specific ADD diet though. At this point, it feels like one more dead end we just don't have the energy to go down.
Although we are frustrated with the process, there have been blessings. Through the time that we have been trying to establish a baseline for his medication, his normal winter health issues have not developed. Usually during this time of year, he has developed an asthma flair that requires round the clock breathing treatments; several prednisone boosts; and on going rounds of antibiotics. So far this year, we have been blessed to avoid that. It is a blessing. I'm not sure we could have dealt with his health issues on top of his learning and behavior issues. Sometimes it is the little things that help keep life in perspective. We are grateful for those little things. Some days, it makes all the difference.
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