There are no miracles
For years after Sam was diagnosed (over 11 years ago, he'll be 14 next week) I was looking for the miracle cure. We tried diets and supplements. Hell, I became a DAN! doctor.
We did ABA, RDI, VB, Floortime (I think I still have the 20+ videos in the attic) and any other number of behavioral interventions. Those helped. Some.
Then we tried mainstream medicine. We tried Strattera when he was 5. I don't remember why, but we never bothered to go beyond the sample. Sam always seemed anxious, so we tried Celexa. Whoa, the screaming at night. Ok, that's a no go. Concerta. Those bite marks on his brother's face were livid enough that my mom asked if we were worried someone would call Children and Youth. Thanks mom, that was supportive. Sam never seemed bad enough to be willing to push past the negative side effects. His problems just weren't bad enough to justify more side effects and we just quit trying medications. This year his attention problems interfered enough that we have pursued stimulants again. Actually a small dose has helped.
Now, Nathan on the other hand! As if the self-biting wasn't enough, the biting peers at school got us motivated. I really hated the idea of atypical anti-psychotics. Even though I'm a doctor, I think we just don't know enough about kids and drugs. I've seen people come away from the psych folks with a half dozen meds, and the last 5 were to treat the side effect avalanche. So we tried Tenex, ugh. Concerta made him worse (and now we know why--it's a bad idea to give a stimulant to a bipolar without tamping down that manic monster.) Then he was biting kids at school, typical peers, NEARLY EVERY DAY. I had a panic attack every time I saw the school's number on our phone.
So we tried Risperdal. And it worked pretty good. So we upped the dose. And he became the HUNGER MONSTER. He was biting us and screaming to get to food. He gained 12 pounds in 3 months--20% increase in his body weight. Backed it way down. Actually to off. And he did pretty good for several months. Until he wasn't good at all. So we restarted the Risperdal at a low dose. But then came this winter. And everything went to hell. I've detailed our nightmares over the last 3 months previously. Suffice it to say that we've started Depakote. And things are a little better.
But not perfect.
Still periods of irritation. Now this is not just a little grouchiness. We're talking banging on the windows, biting his hand while he shakes with the effort, sometimes being restrained for an hour until he gains control. And so when I tell you that this is an improvement over December and January, you must draw your own conclusions. You can see that in our world, we redefine things. A little irritation for us might mean you would call 911 to take a loved one for a psych admission if it occurred to you.
But tonight Nathan was angry with his dad. I asked him how he felt. "Irritated" he SAID in his REAL voice. The other day his dad wouldn't let him have a THIRD ice cream cone. He was pissed. How do you feel? "Frustrated" he communicated via his iPad. In December and January, he couldn't even communicate whether he wanted vanilla or chocolate. And now he can name the angry emotions he has. He is talking more. Today he was walking with his dad and when an expected turn in their walk didn't occur (no going to the pharmacy for a candy bar on Sunday) Nathan started singing a Traveling Wilbury's song-End of the Line. "WELL IT'S ALL RIGHT" he screamed/sang at the top of his voice while he dealt with his frustrations. Tonight he got upset and uptight. So I took him to his list of of things that work for him. He chose Handel (he likes Mozart too. And Aerosmith!) And he stood and rocked while he listed and calmed. And then he sat on my lap to listen. And then he was relaxed.
There is no miracle cure. But there are small miracles in every day. It is a constant effort on all sides to help him. But we keep finding things that work. We also go through a lot of shit that doesn't. But, you know, I'm glad we tried all of it. Even all the really expensive stuff that didn't work. Because I have to feel like we tried.
Even if we never get the big one.
We did ABA, RDI, VB, Floortime (I think I still have the 20+ videos in the attic) and any other number of behavioral interventions. Those helped. Some.
Then we tried mainstream medicine. We tried Strattera when he was 5. I don't remember why, but we never bothered to go beyond the sample. Sam always seemed anxious, so we tried Celexa. Whoa, the screaming at night. Ok, that's a no go. Concerta. Those bite marks on his brother's face were livid enough that my mom asked if we were worried someone would call Children and Youth. Thanks mom, that was supportive. Sam never seemed bad enough to be willing to push past the negative side effects. His problems just weren't bad enough to justify more side effects and we just quit trying medications. This year his attention problems interfered enough that we have pursued stimulants again. Actually a small dose has helped.
Now, Nathan on the other hand! As if the self-biting wasn't enough, the biting peers at school got us motivated. I really hated the idea of atypical anti-psychotics. Even though I'm a doctor, I think we just don't know enough about kids and drugs. I've seen people come away from the psych folks with a half dozen meds, and the last 5 were to treat the side effect avalanche. So we tried Tenex, ugh. Concerta made him worse (and now we know why--it's a bad idea to give a stimulant to a bipolar without tamping down that manic monster.) Then he was biting kids at school, typical peers, NEARLY EVERY DAY. I had a panic attack every time I saw the school's number on our phone.
So we tried Risperdal. And it worked pretty good. So we upped the dose. And he became the HUNGER MONSTER. He was biting us and screaming to get to food. He gained 12 pounds in 3 months--20% increase in his body weight. Backed it way down. Actually to off. And he did pretty good for several months. Until he wasn't good at all. So we restarted the Risperdal at a low dose. But then came this winter. And everything went to hell. I've detailed our nightmares over the last 3 months previously. Suffice it to say that we've started Depakote. And things are a little better.
But not perfect.
Still periods of irritation. Now this is not just a little grouchiness. We're talking banging on the windows, biting his hand while he shakes with the effort, sometimes being restrained for an hour until he gains control. And so when I tell you that this is an improvement over December and January, you must draw your own conclusions. You can see that in our world, we redefine things. A little irritation for us might mean you would call 911 to take a loved one for a psych admission if it occurred to you.
But tonight Nathan was angry with his dad. I asked him how he felt. "Irritated" he SAID in his REAL voice. The other day his dad wouldn't let him have a THIRD ice cream cone. He was pissed. How do you feel? "Frustrated" he communicated via his iPad. In December and January, he couldn't even communicate whether he wanted vanilla or chocolate. And now he can name the angry emotions he has. He is talking more. Today he was walking with his dad and when an expected turn in their walk didn't occur (no going to the pharmacy for a candy bar on Sunday) Nathan started singing a Traveling Wilbury's song-End of the Line. "WELL IT'S ALL RIGHT" he screamed/sang at the top of his voice while he dealt with his frustrations. Tonight he got upset and uptight. So I took him to his list of of things that work for him. He chose Handel (he likes Mozart too. And Aerosmith!) And he stood and rocked while he listed and calmed. And then he sat on my lap to listen. And then he was relaxed.
There is no miracle cure. But there are small miracles in every day. It is a constant effort on all sides to help him. But we keep finding things that work. We also go through a lot of shit that doesn't. But, you know, I'm glad we tried all of it. Even all the really expensive stuff that didn't work. Because I have to feel like we tried.
Even if we never get the big one.
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