Meds, Realizations, & Growing Up
I spent part of last week at the National Alliance on Mental Illness Conference in Chicago. It was a phenomenal three days where I learned a great deal, met some amazing people, and enjoyed playing tourist in my hometown. On the opening day after the keynote speech, I was having dinner with several BringChange2Mind folks including Jessie Close and her son, Calen Pick. Jessie and Calen had given moving and thought-provoking speeches earlier in the day and we were lounging at a local pizza joint, recapping their talk, and discussing our families and the convention. I don’t remember exactly why, but the talk turned to meds and side effects and I mentioned that Tim was on 600 mg of Clozaril a day. Jessie’s eyes about popped out of her head. She said her son – diagnosed at 15 and now a man of nearly 30 - had never been on a dose above 375. The conversation moved on and as our evening ended and I got on the train for the long, slow ride back home, I started thinking. Why IS Tim on that much Clozaril? Does he really need to be? Are we over medicating him? He’s been doing great for a while now; maybe we can dial back his meds a bit? Maybe he doesn’t need the Clozaril at all – maybe we can get away with a medication without so many warnings and side effects? I chewed on the idea all night, rolling it over in my thoughts as I tossed and turned in bed. Clozaril scares the ever-loving bejeezus out of me anyway. So if there’s a possibility we can get him off of it, why wouldn’t I? What kind of mother am I to keep my child on so much, well, poison? There’s been article after article in the news the past few weeks about how doctors are overprescribing psychiatric medication because they’re in bed with Big Pharma. Have I been duped?
The next day, I attended a session on transitioning children to life beyond high school, presented by Linea and Cinda Johnson. Linea was diagnosed with Bipolar Disorder after a particularly difficult time in college where she had periods of extreme mania and deep, dark depression she wanted to end by taking her life. Cinda, her mother and fellow The Balanced Mind Foundation blogger, talked of feeling helpless and, at times, hopeless, as she struggled to keep her daughter alive, forget about in college. They each read passages from the journals they’d kept during this time period, passages that were as raw and shocking as they were moving and poetic. After talk about the past, they talked about the future, and how Linea, now in her mid-20’s, is learning to self-advocate and how Cinda is learning to let her be responsible for her treatment. It hasn’t all been easy. Linea shared that she had a particularly symptomatic Winter. Cinda told of how she waited for Linea to ask for help, providing gentle reminders that she was there for support. I was immersed in the alternately frightening and hopeful stories so deeply I almost missed the most important thing Linea said: she needs her meds. She will always need them. Yes, she’s tried different meds, and yes, she works to minimize side effects and deals with the ones that remain, but meds are a necessary part of her treatment regimen.
I thought about Cinda and Linea’s words later, and I compared them to my memories of what Tim has said about his meds. He hates how tired the Clozaril makes him feel, so he asked his doctor if he could take the bulk of his dosage at night so he isn’t tired all day. He told his doctor that his anxiety med was only taking the edge off his anxiety, and then told her again when a doubled dose destabilized his mood and needed to go back down. Tim is learning to self-advocate, and he knows what his meds do for his symptoms. And, when I really think about it, when he was on 400 mg of Clozaril, he said the voices were still unbearable. He knew his med level wasn’t right or, more accurately, wasn’t right for him. What might have been too large a dose for Calen turns out to be just right for Tim. I have to remember two things. One, at 17, Tim is reaching a level of stability and maturity that has allowed him to internalize his diagnosis, pay attention to his symptoms, and advocate for himself. And two, meds are a permanent part of Tim’s treatment plan. He knows this – he reminds me if 4 PM rolls by and he hasn’t had his mid-day dosage – and I have to internalize it as he has. He knows what’s best for him, and I have to take a page from Cinda’s journal, and let him make his own decisions while I remind him I’m here if he needs me.
Those of you with young children suffering with Bipolar will truly understand this. I have been in a battle for about two years to have my son diagnosed. I knew what his condition was and offered my thoughts to every specialist I took him to. I was often looked at as one of those mother's who thinks she knows everything who just because I have the same degree and has studied the DSM-IV I can properly diagnose my child. Let me put up a little history...first of all I have seen the behavior before. My son's father was Bipolar and I know this because I lived with it....DAILY...during the time I was studying it in school. It really pushed me to delve more into the disorder and to recognize several misconstrued aspects of it. When my husband would come down from his manic phase I would reason with him....even beg him to go seek professional help. I knew only medication would help. He began to self medicate with over the counter speed mixed with alcohol. Knowing what everyone knows about Bipolar and Stimulants, you can only imagine what he was like as a drunken sped up during a manic phase person he became. He was the love of my life but when he hit his thirties and these symptoms began protruding, it was only a matter of time before I had to have him physically removed from our home. He was a really good man...with a real ugly disorder. So as the faithful counselor I am, I immediately took my son to counseling to monitor his adjustment period. He would after all need it because he would not be allowed any contact with his father (possible abandonment issues pending). He adjusted well and it seemed we were in the clear. About two years ago I began noticing some changes with my son. He would get super hyped up, rarely slept and trying to tell him to do something was an absolute battle. Super Counselor Mom I am returned him to treatment for an assessment...Diagnosis-Oppositional Defiant Disorder (aren't all kids really??) I knew this was the wrong diagnosis. I felt in my heart this was just a symptom of a much larger problem. I succumbed to the thought of medicating my son. First medication-Buspar. Now, I had done some brief research on the medication while waiting for it to be filled at the local Walgreens...very brief...if only I had known then what I know now about that medication. My son was only six years old at the time. Buspar brought out a monster in him that I have never seen before in any child. He was kicked out of two summer camps last year due to aggression, almost breaking a child's arm. The ARNP that prescribed it...no insurance so we were going to a "cattle call" facility where only the "really messed up kids" got to see the actual psychiatrist...her response...UP THE MEDS!! I trusted her judgement although I did not truly agree but I honestly know little about the medication side. I'm a counselor, not a prescriber. Well the increase in dosage actually made him worse and I didn't think there was a worse. I feared he would hurt his sister (2 years older than he but just a little more petite). I tried every "counseling tactic" I could think of. I loved on him, I stood my grounds with him. When he walked out of the house determined he was going to leave, I offered to drive him to wherever he wanted to go and in the meantime told him he would probably have to live at the boy's home since he would not be able to work and buy his own food. Even went as far as taking him to the boys home (I know the director there) and introduced him and offered to let him stay. Nothing phased him but he did stop trying to leave the house. I went to the ARNP with infinite wisdom and used my voice for the first time...advocating for my son. I told her his problems were, now in my eyes, managable before the meds! The ARNP reassesed him and gave him the new diagnosis of ADHD with a new medication of Vyvanse. She said he was ADD/ADHD because he never paid attention to her when he was in the office with her...A little background information: my son was named after his father. At a young age, even before leaving my husband, he started being called by his middle name. I had noticed in the past that when someone would call him by his first name (his father's) it would sometimes be a trigger that would fluster him a bit. I have explained this to every provider he has been to and they have made valiant efforts to only call him by his middle name. This lovely ARNP during the cattle call would come to the holding pen and call for him...his first name. I would motion for him and call him by his correct name and tell him it was time. As we walked past her to the "butcher's block" I would always reminder her...don't forget to call him by his middle name, first name is a trigger. As she would sit upon her throne and review his chart, my son eyeing her with lack of respect, she would ask him...How have you been feeling....and of course follow it with his first name! So, ADD/ADHD...nope, he just didn't like having to keep telling her, DON'T CALL ME THAT!! Yes I know I can change his name but factoring in all of his medical expenses, $300 to change his name is not really a priority right now! So ARNP put him on Vyvanse. It worked great...for a couple of days...he had just been "suggested" to leave his private school while he was being titrated off the Buspar so new meds, new school...ready to go!.....stay tuned for Part II, the remainder of the school year...
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Summer J. Graham
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Daugher 10 years old. Has been diagnosed Bipolar and many other things.
Son 17 years old ADHD and very defiant.
Husband travels.
Myself depression and always at witts end.
New Hampshire the last four years. Before this Pittsburgh PA