Going Meds Free

palmofherhand.

Ever since my husband and I made the toughest decision we’ve yet to face as parents—putting our daughter on medication for bipolar disorder when she was 7—I’ve fantasized about getting her off it one day. Last summer, a few months after she turned 11, I finally did.

I have too much to say about this for one post. So today I’ll just give you a little background on Sadie’s medication history and explain why I weaned her off meds. I’ll let you know what happened in a separate post next week.

Unlike many kids with bipolar disorder, Sadie’s never been on more than two drugs simultaneously. We’ve always been willing to sacrifice a bit of stability to avoid exposing her to an industrial-strength cocktail of drugs. For the past couple of years, she’s mainly been on a low dose of just one medication, Abilify, an antipsychotic approved by the FDA to treat young children with mania and mixed states (mania and depression occurring at the same time) caused by bipolar disorder.

Here are the main reasons I pulled the plug on her meds:

1. I didn’t know if medication was helping Sadie the way it once did. At first, there was no denying it changed her life. The self-hatred, nonsensical talk, phobias and threats to hurt herself or others all but disappeared. In school, she could focus and stay seated longer than she’d ever been able to. She made new friends and built the self-confidence to try things I used to think she’d never do, like taking dance lessons and performing in a talent show. It was easier, back then, to accept side effects like weight gain. And to feel less guilty for dragging her to a lab every few months for the blood work she hated.

But as she grew and matured, it got harder to distinguish between changes brought on by medication and changes related to natural development. Plus Sadie’s always been extra sensitive to medication. When we attempted to increase her Abilify to compensate for her growth and help her get through some rough patches of anxiety and mania, she became extremely irritable.  So although her weight had almost doubled, and she was more than a foot taller, we stuck with the original dose we’d built up to when she was 7 (which was already lower than what most kids her age and size take). I couldn’t help wondering if the Abilify was really working anymore.  If she wasn’t taking enough to make a difference, and increasing the dose did more harm than good, did it make sense for her to take it at all?

2. I worried about her physical health. It’s a rare day that passes when I don’t think about how the drugs Sadie’s taken for almost five years now—drugs that haven’t been tested long-term on children– may affect her down the road. At the very least, I wanted to give her body a break.

3. I had doubts about her diagnosis. I’ve been dealing with Sadie’s bipolar disorder for more than half her life now. She’s received the same diagnosis from several respected child psychiatrists. We’ve been through a barrage of neuro-psych tests that support a bipolar diagnosis. Members on both sides of our family have it or other forms of mental illness.  So you would think that by now I’d have accepted it. Yet there are still times, especially when she’s more stable, that I slip into denial.

4. I felt judged. I know I shouldn’t let the subtle–sometimes blatant—criticism parents who medicate children with psychiatric disorders experience from the media, other parents, and society in general get to me. But sometimes I do. Just last week, two articles conveying this message popped up in my Facebook news feed. I get where the skeptics are coming from–I was one of them for a long time. Until I became desperate enough to try anything to stop my daughter’s suffering, I never imagined I’d be the kind of mom who would medicate her young child.

5. I wanted to see the real Sadie. This is related to the first item on my list. Sadie’s a tween now, going through puberty. Her body and brain continue to mature and change. Hormones are coming into play. I wanted to see how this Sadie, not the deeply troubled little girl she was back when we started this journey, would function without any drugs in her system.

Stay tuned for a follow-up post in which I’ll talk about what happened and what I learned from this experience.

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10 thoughts on “Going Meds Free

  1. You remind me how life is always a process–how we continue to grow and learn, how what worked before might not work now. And it sounds like your daughter is so articulate about her feelings and emotions. Rooting for you and your family.

  2. It always amazes me how different life really is from what we expect. I love your thoughtfulness — she’s lucky to have such an involved, educated, and thoughtful mom to help her through these trials. I’m looking forward to hearing how the experience went and what your expectations for the future are.

  3. Oh my goodness Dorothy, I am so glad to read this post, because I am in the exact same rumination process! I haven’t yet begun to discuss with the psychiatrist any sort of weaning process, the latest action was a slight increase in her lithium, but it appeared to elicit symptoms of toxicity so we went back to the original dose within a week. This medication dance is so difficult when there is no definitive answer and we so desperately want to help our children.

    I can’t wait to read your followup post. Is there a way to sign up via email?

    1. So nice to hear from you, Melody! And it always makes me feel better to know there are other moms out there dealing with this stuff. I wish I could say that she did fine without meds. But sadly, it became clear after a while that she wasn’t. She has just started a new medication–still too soon to see if it will help. I don’t regret taking her off them for four months–we all learned a lot. And I was reminded that this is a serious illness she’ll likely be dealing with her entire life. Lots more to come. We’re exploring other options in addition to–maybe eventually in place of?–medication. I need to figure out how to set up the e-mail sign up. Sure it’s not that hard–I’m just not that savvy when it comes to technology!

  4. Hello Dorothy, Your post is so full of thoughtfulness.
    I have ADHD by brain damage and where I live, ADHD carries a huge stigma (even by doctors : I’ve been denied medical care by docs because they considered me as a drug addict, so I know what stigma from psych meds is).

    About medication for ADHD, bipolar… reasoning the same way as if it was a physical illness helps. If Sadie had asthma, diabetes, cancer, allergies, ESRD… would you wonder twice about giving medication to her ? Not at all, you would give her medication because she needs it for managing her illness.
    Same for bipolar.

    Do you think that parents who have children with cancer don’t fear about meds side effects ?
    They worry about side effects of medications the same way you worry about bipolar meds’ side effects.
    They are at the very same place as you are.
    They are no different than you.

    But contrary to cancer, bipolar, ADHD and such carry a huge stigma.
    Easier said than done, but think that when people judge you, it’s their problem, not yours. Your job is taking care of Sadie and if it means that she needs meds, be it !
    Taking care of skeptics is a waste of time, distracting you from the most important point : taking care of Sadie who needs YOU before any of those skeptics.
    Skeptics judging you ? None of your business, not your problem. You didn’t create it, you cannot control it and you cannot fix it.
    It does not bring you anywhere. They are a waste of time and energy.

    As far as science knows now, stopping meds for bipolar is the exception, not the rule.
    If Sadie can do it, good. But otherwise, it’s ok. It’s life.
    The key point is helping Sadie building a fulfilling life, now and in the future. If it involves medication, be it.
    Having to take medication does not take Sadie’s true personality away, it instead helps her bring the best of it because her symptoms are managed.

    Medication alone does not do everything, but they are Sadie’s friends for a happy and fulfilling life.

    Take care

    1. Thank you so much for your comments–they are spot on. I plan to touch on some of these same points, which I learned-or relearned– the hard way, in my next post. You are right–it’s a complete waste of time worrying what other people think about your child’s diagnosis and how you decide to treat it. Intellectually, I know this. But sometimes the people-pleaser in me forgets it, I guess.

      1. What about helping the people pleaser part by : “do these skeptics take care of my child every f.. day ?”.
        Since its answer is probably “no way”, then, you really need to move on.
        These skeptics will be the first to judge you when something bad happens to Sadie because she didn’t take her meds.
        With those skeptics, you never win : either you give Sadie medication and they judge you for it, or something bad happens to her because you don’t give medication and they blame you.
        Let me say it again : in front of skeptics, you never win, medication or not medication. They are the dumbest people you can ever met in your life.
        Don’t take care of them, because trying to please those ones will drain you : whatever you do with Sadie, you are doing wrong in their eyes.
        It does not worth exhausting you to please people you cannot win, whatever you do.

        In such a setting, being a people pleaser will bring Sadie at her very own loss.
        So, when the people pleaser part takes place while it harms your daughter, you can find a way for keeping this part at bay.

  5. I’ve just discovered your blog and I am devouring it. There is so much of my sweet girl in your Sadie. Thank you for sharing yourself with us. We have recently started seeing a family therapist and she is really helping me to reframe the way I think about myself as the mama of my girl. One of things she is helping me with is to see the gift I have been given. I had lost sight of any joy in my relationship with my daughter. Our therapist talks about the Buddhist idea that this soul chose us for this incarnation because we are capable, loving, safe parents that will help our daughter to be the best her she can be. Your daughter has this in you and for that she is truly blessed. I wish you peace in the knowledge that you are the best mama for your girl.

    1. I’m so glad you found my blog, Cayo! And thank you for your kind, wise words. I agree, in some ways, my daughter’s bipolar disorder has been a blessing for both of us.

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