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Welcome to Chemistry One-Oh-Twilight-Banana

I’ve been wanting to write an update about Carter, but whenever such an update involves lots of discussion of medications I hesitate. Why? Because psychiatric medications for children is an extremely controversial issue and I have been attacked (verbally and online) and watched friends endure attacks. Most recently, Meg over at Raising Bipolar drew fire from a vocal group of anti-psychiatry activists and sometimes I feel like, if I write about meds, I’m leading with my chin.

On the other hand, why do I write about Carter? Why do I tell the stories of my family’s struggle and pain? Lots of reasons, and one is because I want to put a face on the hysterical media coverage about parents “drugging” their kids, to show that we are normal families in extraordinary circumstances, just like families with children who have cancer or diabetes. I want people, as many people as possible, to know that responsible, concerned parents have kids who are mentally ill, and some of us choose medicine as one of the ways that we help our kids.

So, all that said, I’m going to try (really, really try) to stop justifying the decisions that Brian and I make with regards to medicines and therapies for Carter. I want to be a woman and mother who has the courage of her convictions, and so maybe, maybe, if I move forward into the world acting as if I am that woman, it will eventually be true.

So.

Two months ago, we knew that risperidone (Risperdal) was not as effective as we’d hoped it would be for moderating Carter’s mood instability and rage so we switched to one of the newer atypical antipsychotics, quetiapine (Seroquel). It worked great, too: his moods were adequately stabilized, he wasn’t as ravenously hungry as on the risperidone, and he even enjoyed a significant decrease in anxiety.

But.

Have you ever been around a hyperactive kid? I’m not talking about an active kid, but one with genuine hyperactivity, where he or she honestly can’t stop moving climbing running talking spinning yelling. Think of that hyperactive kid, then put her or him in a room with a dozen other kids who are also very hyper (in your mind, for goodness’ sake; we don’t want to create a cosmic event by doing this in reality). Now melt them all into one child, add a dash of red chili powder, and wind him up tight. That’s what quetiapine did to Carter. Since most people who take quetiapine find it extremely sedating, this was more than a little surprising.

Carter was experiencing a side effect called akathisia, an indescribably awful feeling of restlessness. It’s typically accompanied by feelings of acute anxiety and dysphoria, but Carter didn’t have that which probably explains why it took us as long as it did to identify it. During the weeks he was on quetiapine, Carter was shockingly destructive (not because of anger but because he could not slow his body down), required more sleep meds than usual, and you know how people say, “I can’t take you anywhere!”? I actually couldn’t take him anywhere. I was afraid to take him to see Grammy for fear he’d break her, and I couldn’t take him to stores because there’s no way I can afford to pay for all the things he might have broken.

In the meantime, Carter’s teachers greeted me at the end of every day looking like the proverbial deer in the headlights. Carter’s psychologist and behavioral management specialist were both stunned by his level of hyperactivity. It was breathtaking. Truly.

The next atypical antipsychotic in line after quetiapine is aripiprazole (Abilify), but that drug was out of consideration from the start. His significant akathisia from quetiapine, plus the fact that I had an akathasia reaction to Aripiprazole several years ago, meant that the likelihood of a similar reaction was high.

Does this sound like a complex, frustrating dance in which Carter, Carter’s illness, the meds, the psychiatrist, and Brian and I are engaged? That’s exactly how it feels.

We took Carter off the quetiapine and put him back on the risperidone. Since that drug in combination with oxcarbazepine (Trileptal), the mood stabilizer he’s been taking for about a year, has not been adequate, we needed to change to one that’s more robust. Enter lithium.

Sigh.

That’s about where we are now. Carter has been off quetiapine for nine days and he’s back to his typical level of hyperactivity, which right now seems downright sedate. He’s started the lithium, but we won’t start to wean from the oxcarbazepine until he reaches a therapeutic level of lithium in his blood. As much as we hate to have him on so many medications at one time, changing too many meds too fast creates a risk of him becoming suddenly unstable. We are constantly trying to minimize the risks of these high-powered medicines while also minimizing the risks of this high-powered illness.

Even though lithium is one of the oldest and most effective of psychiatric medications, it’s not usually a first-line drug. It requires close monitoring (all psychiatric medications do, of course; lithium requires extra) because too little lithium is useless, and too much is very dangerous. People being treated with lithium require regular blood tests, something that doesn’t especially impress Carter. He had his first lithium level drawn this morning and while he did great, it’s not something he and I look forward to doing every few months for the foreseeable future. Of course, I’ll do whatever I need to do to keep him safe (including getting him some EMLA cream to make the draws easier), but I don’t have to like it! We also have to be careful to keep him well hydrated as dehydration increases lithium concentration and can cause lithium toxicity.

I made it through college chemistry by the skin of my teeth, which just goes to show that you can learn anything if you need the knowledge bad enough. Here’s hoping this is the last med change Carter has to endure for awhile. He deserves a nice, long period of stability. I want nothing, absolutely nothing in the whole world as much as I want that.

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15 comments to Welcome to Chemistry One-Oh-Twilight-Banana

  • Kris

    Wow! I am speechless.

    Your son does deserve a nice long period of stability.

    And so do you, my friend. So do you.

  • Adrienne

    Thanks, Kris! I feel more hopeful than I did when we did the change to quetiapine, so fingers crossed!

  • Skywaitress

    I feel poor Carter on the blood draws. I'm a big baby when it comes to needles. HATE them. In fact, he's probably braver than I am when it comes to them. At least he's (hopefully) not a fainter like me, haha.

    I hope this medicine works for him. You both definitely deserve a break.

  • Through Thick and Thin

    thanks for sharing. i'm right on with you 110% on meds. We don't WANT to medicate our child but sometimes we HAVE to because it's best for them. If someone has diabetes would a parent hold off on medicating them because it's too controversial? – never! so if medicating our child helps THEM live a better life, then it should be done.
    (stepping down)
    Here's hoping you reach some sort of stability in your home. We've been searching for it here for a very long time as well.

  • Tiffany

    I don't know how you do it momma! You never fail to amaze me. Carter is so lucky to have you. You're doing the best thing for him and you know that in your heart of hearts. Don't let anyone tell you otherwise.

  • Meg @ RaisingBipolar

    Amen sister. I am a complete med phobe but mania is freaking scary and while I HATE using meds my kid would lose all of his friends and be straight to jail soon is we didn't help him. Unfortunately the stakes get quite high as they get older.

  • Adrienne

    Thanks, all! It's true; med decisions are the hardest of all. Today he's an anxious mess, so we'll see. Seems we're always waiting to see about something.

  • Melody

    Seroquel was pure hell for our son. OMG, he was close to an ax murderer on the stuff…I do not exaggerate. (readers, don't judge me for that comment…you have to live it to accept it) His dx is bipolar.

    Abilify…heavenly. Really. It was the first time our son stated "I feel peaceful. Wow, I've never felt that before." Then drs took him off for fear it was intensifying his ADHD. Hell broke loose and continued with med after med trial per drs.

    After a looong time we realized and said put him back on Abilify. He will be coming home from residential treatment soon with the behavioral changes having occurred after our demanded med change back to Abilify (he does take other meds w/ it)

    Hugs prayers and good thoughts. He (and we) been living with this for 15 years now, really. I understand, completely.

  • CaneWife

    I'm thinking of you and your family. I have no advice to offer, but I can send hugs and good thoughts.

    You don't have to justify what you do as parents. I realize there are people out there who judge harshly, but until they've walked a mile in your shoes, they really don't know what you're going through. You are a loving mommy who is doing her damndest to keep her son healthy and safe. That's amazing in my book.

    Lots of love.

  • Taz's Mama

    Ahhh! I'm in the exact same place! And I don't have as many options because Taz's doctor is very cautious with meds cause he's so young. He is on risperdal and depakote now. We tried to go without the depakote cause it caused weight gain and he was eating like crazy. But when he went off he became so violent that it was just dangerous to have him in the same room as his little sister. So we put him back on it and all he does is cry now. Doctor won't prescribe anything else (other than exchanging risperdal for abilify but not sure that will do anything). I'm don't really know where to go from here. I have to choose between a crying Taz and a violent Taz. It doesn't seem fair. I might have to beg the psychiatrist to try something else.

  • i’m just making my way through your older posts. I feel your pain with the complicated medication process. My son has CVS, migraines, ocular migraines, etc… we had him on topamax and it was working wonders. However he developed acute angular glaucoma from the topamax (he only has one eye with precious little vision at that time) so he was taken off the topamax. Next drug on the list was ativan, we had to have a baseline EKG, EEG prior to starting this med. The EKG and EEG revealed not one but two previously undiagnosed heart conditions so the ativan was not a choice, so he is now on depakote which isn’t nearly as effective as the topamax. Oncologist and Cardiologist have said he cannot take any tylenol products and ibuprofen – he can only have two doses in a 7 day period. Neurologist says due to radiation side effects he cannot take any typical pain medications, etc… so he is limited to morphine pretty much and only takes pain meds in extreme situations… yeah it sucks when your medical situation is so extremely complicated. We have had a number of doctors tell us straight up that they cannot treat him because he is so far out of their realm of normalcy.
    wildflower recently posted..Toilet Paper

    • Holy crap! What a lousy combination of awfulness! I know all too well how awful it is to watch my child suffer. There is nothing worse. Nothing.

      I really hate when doctors say they won’t treat because it’s out of their realm. Unless you’re passing a patient on to someone whose realm it IS, how can they do that? A good doctor who is trying to do his or her best, even if they’re in over their heads, is better than no doctor at all. Just leaving families adrift? I know that it happens all the time, but that doesn’t make it OK.

      Does he have good care providers now?

      • he does have good providers now. I hate being left out to sea on my own but I am also somewhat grateful that some physicians know and accept their limitations. At least we don’t have someone ignorant thinking he is god, trying to treat our children.
        wildflower recently posted..Wish list

        • True. I’ve heard stories of families having no doctors at all because problems became so complex, no one was willing to stay with it. What a nightmare.

          I’m glad he has good providers now.

  • Novemberly

    We are going through this right now. Im about to lose it. Really. The mixed state our 7 year old has been in is terrifying, exhausting, and maddening. We are about to start Lithium on top of her Depakote…psych wants to add an atypical antipsychotic, but Risperdal and Abilify were horrible horrible horrible for her. Every possible side effect except imminent death. So the pharmacy tells us they don’t make the perm of lithium our doc prescribed anymore so we have to wait days until we can get him to rewrite it. Sigh.

    Thank you for sharing your stories – I just found you and sometimes feel like the only one. But I know Im not thanks to those of you who take the time to write about childhood bipolar.

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