How’s Gabriel?
I hear that all the time. There is no simple answer. But answering it is the focus of my daily life. Every day. The real answer is Gabriel’s not OK. Gabriel is Bipolar. His moods shift. Daily. Weekly. Yearly. He is never OK. I spend my days like a detective trying to sniff out any small clue of a mood change, charting, taking notes, observing him. Worrying about him.
He spent 10 months of the last 12 (literally, not figuratively) suicidal, dangerous, aggressive, and explosive. His meds are controlling that a little, but he is manic right now. Which is dangerous in other ways. And his meds aren’t holding that in. They aren’t ‘stabilizing’ him like they are supposed to. And without going into a tirade about doctors, I don’t have a ‘handle’ on this the way I PROMISED myself I would last October. And last May. And last July. You get the point.
The fact that mania seeps out now means that Gabriel is hyper (he isn’t normally at all), he is giddy, inappropriate (laughing, jokes, rude comments, butt jokes, pulling his pants down in front of a friend during a play date, etc), and more likely to jump off the roof (or trick his brothers into doing it) than anything else. Which is, in some ways, better than the dangerous depressive side. However, as October comes to a close, so will the mania, and the bipolar depression will replace my giddy-inappropriate child with one who hates the world. Who hates me. Who hates his brothers. One who is so negative and dangerous that he threatens to take knives to school and kill people. That kid is hard to live with. That kid is hard to keep safe. That kid threatens my sanity and the safety of my other two children.
We have to put him on another medication. A stronger medication. And although our ‘nurse practitioner’ is willing to give him a new medicine now, (they want to put him on Lamictal), my next appointment with his actual doctor, a real psychiatrist, isn’t until November 24.
Yes, the day before Thanksgiving.
Why wait? Because Lamictal has a 1 in 1000 chance of a deadly side effect. A deadly rash that may just start itself in the depth of my son’s mouth where I am less likely to see it. Less likely to be able to get him the immediate medical attention required. That scares me.
And scares my husband. So much so, that he refuses to give our son this drug until we see our psychiatrist. Who we can see the day before Thanksgiving.
So, I will bake pies early this year. And spend the that glorious Wednesday afternoon admiring the artwork on the walls of Children’s Hospital, nervously wondering if I will be rushing Gabriel to the ER with a rash on Thanksgiving day, and trying to hold down all those bites of pie I shoved in my throat in the anticipation of this moment where we are forced to make, yet another, hard decision about our son’s care.
But I have no choice. So we wait.
But the cycling won’t wait.
Depression is nipping at his heels and I am not sure we can out run it.
Kristin says:
October 25, 2010 at 8:31 pm
That sounds like an incredibly tough situation. My thoughts and prayers are with you.
Hartley Steiner Reply:
October 26th, 2010 at 1:16 pm
Thank you.
kelly says:
October 25, 2010 at 8:49 pm
I am so sorry that you and your family are going through this. It must be equally hard on Gabriel. I wish there was something I could say, but anything I can think of seems inadequate. I will be sending positive energy your way, and I hope that you find a solution that works for everyone.
Hartley Steiner Reply:
October 26th, 2010 at 1:16 pm
Thank you for the comment, and for pointing out how hard this is on my son. He is truly struggling and as a mom, that is the most difficult part.
ephill76 says:
October 25, 2010 at 9:00 pm
My daughter is bipolar (and a couple other things too) and lamictal is part of her cocktail of meds. I can’t say it’s due to the lamictal on it’s own, but she’s been on the same meds, with only slight adjustments, for several years now and it’s been the most calm, happy years we’ve had since she was tiny. I’ve been through the “lock up all the knives” times and the holes in the walls times and I would never want to go there again.
Of course none of that means it will work for your son.
Hartley Steiner Reply:
October 26th, 2010 at 1:21 pm
It is always reassuring to hear that someone else is going through what we are. And it is incredibly reassuring to think that my son may have some calm and stable years ahead of him. I can only hope! : )
Sarah says:
October 25, 2010 at 10:01 pm
Hartley, I hear it. All of it. Scary stuff, awful stuff, wishing-you-could-do-more-but-there’s-so-little-”more”-to-do stuff, and most “more” comes with frightening side effects or at least big questions. I live that day to day with a mood-disordered, sleep-disordered, sensory-processing-disordered son.
But I also want to tell you: our (incredibly sensitive) son is on Lamictal, and it’s been very helpful in terms of evening his mood, especially reducing earth-shattering meltdowns and the deeper depressive lows (full disclosure: my son hasn’t been diagnosed as bipolar; we see a psychiatrist who is anti-label, which doesn’t mean we couldn’t get that label if we tried for a minute or two). We too were concerned about the one dangerous side effect, but three things comforted us: 1. The rash occurs most often when a dose is started too high and/or increased too quickly, 2. The dosage for mood stabilization is much lower than that for a seizure disorder (which is what the drug was developed for), and 3. Lamictal (unlike most mood-stabilizing medications) has been safety-tested for children as young as age 2 with seizure disorders. So if you are working with a doctor who understands Lamictal and uses it to treat bipolar disorder and is aware of the risks and how to mitigate them, you are much more likely to see the benefits of this drug than the downsides.
Kiki Chang at Stanford is doing studies on bipolar kids and Lamictal, and his work is very promising. It is worth at least a phone call to Stanford as part of your research.
Can you impress on your psychiatrist that this is an emergent situation? Or find a new doc who can see your son in a more responsive way?
Good luck. Bake pies. I’ll be thinking of you.
Hartley Steiner Reply:
October 26th, 2010 at 1:18 pm
Thank you for sharing about your son’s medicine. It is so difficult to know what to do. We do have an amazing doctor, but because of his senority he is very involved with research at the University and Children’s Hospital. I am trying to be patient, but your experience makes me feel more optomistic about Lamictal. Thank you.
PS. I love your blog. 🙂
Sarah Hoffman Reply:
October 26th, 2010 at 2:20 pm
It means a lot when you love your doctor, sometimes that means it’s worth waiting. I get all desperate every time it seems like there is a new answer and want it to come immediately, but the reality is, if the next step is going to be an important one for your son, than the wait will be worth it.
Thanks re my blog! I love yours too, I’ve been perusing it and wanting to get in touch anyway (stark. raving. mad. suggested that I do), so this was a nice (nice? really?) way to begin a conversation. 🙂
cm. says:
October 25, 2010 at 10:03 pm
as a bi-polar kid of two mentally healthy parents, thank you for the love and concern you have for your child. i don’t think my parents even know what meds i take, let alone their side affects. no matter what the outcome, you are a wonderful parent.
Hartley Steiner Reply:
October 26th, 2010 at 1:19 pm
Your compliment means a lot — thank you for taking the time to comment.
MamaKaren says:
October 28, 2010 at 8:59 am
Good luck. I think as parents, one of the most heartbreaking parts of dealing with these mood disorders is the knowledge that we *want* to fix it but we are so, totally, hopelessly unable to do so. We are currently in the “let’s see if we got the meds sorted out” stage of treating my daughter’s bipolar tendencies with Abilify, and my son has been on riperidone for about two years. I want some reassurance that the medication and the therapy and the other things I do are right, and I hate the idea that all I can do it try it out and see what happens.
Sometimes the answer to “How’s [child’s name]?” is “As well as can be expected.” Saying that my children are OK means something totally different than it used to.
My thoughts will continue to be with you.
I have to ask, how old is Gabriel? Our son has been battling for the last 2 years with SOMETHING, which we are more and more sure is Bipolar but we are still waiting for a diagnosis besides ADHD. The doctors we have found recently (and REALLY LIKE) want truly charted behavior before labeling. I understand…
I hope your doctors come to an agreement and you can find something that helps him enjoy “normal” emotions because feeling the way these kids feel is completely unfair, they deserve to feels the normal highs and lows of being young not these catastrophic waves