Medication Sea Change

I took Leelo in for a fasting blood draw this morning. By "fasting blood draw" I mean our boy went twelve straight hours without food -- a real challenge for a kid who wants to eat the moment he awakes, cries real tears if that wish is not fulfilled, and who has recently resumed early waking.

I was nervous. Which is the short version of, "By 7 PM last night, I had developed constant chest pain, as is not uncommon with an impending panic attack."

Thankfully, our boy was brave, and the blood draw swift and smooth.

The positive outcome was not entirely a matter of luck. We kept Leo up a bit late, so he was still asleep at 6 AM when I needed to wake him. I whisked the snuggly sleeping boy out of bed, onto the pot, into his clothes, and out to the car before he was truly awake, while Seymour sneakily put together a morning meds PB&J sandwich and slipped it into my purse.

We also arrived the moment the lab opened, so as to be first in line and avoid a waiting-fueled breakdown. Leelo didn't have time to get agitated, so he only tried to pull out the phlebotomy needle once, and it only took three of us to reassure him and help him stay still rather than the usual five of us to hold him down. By the time the last blood vial had been popped off his line, even the nurses were chanting, "First needle, then sandwich."

He sure enjoyed munching on that sandwich. And I enjoyed a peaceful and side-effect free morning with Leelo, even though he'd started his day off-routine with an empty stomach and a stab.

Part of his emerging ability to tolerate unpleasant scenarios is maturity -- his kind of autism means developmental delays, not developmental stasis -- but another part is the medication Risperdal, which Leelo has been taking for just over a year. And Risperdal is the reason his blood was being tested in the first place -- last month's non-fasting and therefore less reliable blood test indicated that his blood sugar and cholesterol levels are elevated, putting him at higher risk for diabetes and cardiac issues. If he shows the same elevated levels while fasting, then we may need to switch him to another medication.

I'm not thrilled, because we went through some fairly fiery hell to find Leelo the right medication, and I don't want to risk a repeat. But I'm also not surprised. Though a very low daily dose of Risperdal brought Leelo (and, so us, his family) almost an entire year of relative bliss, we're starting to realize that the drug's effectiveness is fading. He's slowly resuming the challenging sleep patterns of his first eight years, and he's starting to have less patience with adversity or the unexpected.

We know why the Risperdal is becoming less effective. He has grown a lot, gained a lot of weight over the past year, while his dosage has remained constant. But neither we nor his doctor want to raise his dosage, as it could skew his blood sugar level even further, it already makes him hungrier than usual, and we don't really want to find out what lies beyond "constantly, desperately ravenous."

What will our options be? Most other medications in Risperdal's class of antipsychotics have similar potential side effects. The best option so far seems to be Seroquel which usually brings more sedation and less weight gain, and is usually fairly effective in terms of stabilizing mood. Another occasional choice is Geodon. It's weight-neutral. But it can also change blood chemistry and electrocardiogram readings, so we'd have to do periodic EKGs -- not something Leelo would likely submit to.

Another option: sometimes when kids with autism have intense behaviors or stims, they are rooted in anxiety. The anti-anxiety drugs typically prescribed to kids like Leelo are SSRI meds like Zoloft or Prozac. Their side effects are usually not significant: sleep disturbances or increase, appetite increase, stomach upset, headache, and very occasionally they have the opposite of the intended effect.

They're worth considering, because Supervisor M thinks Leelo's lingering, cycling, currently escalating, and always present stim behaviors -- which at the moment include raspberry-style spitting, repetitive slapping of or stomping on hard surfaces such as car interiors or wooden floors, needing to slam the toilet seat several times after each potty drop, and spinning -- are actually an OCD or anxiety manifestation.

I have to admit, I'm bummed that we're having to consider switching Leelo's meds at all. He had such a great 2009, and I took none -- none! -- of it for granted, as his late-2008 Abilify-generated tantrums and violence were one of the worst periods our family has ever experienced. I am grateful to Risperdal every time I'm able to sit down with my son and watch even 15 minutes of a movie or video, if he also puts his head on my shoulder, and for the 90% certainty that he won't randomly turn around and punch me. Even though his behaviors are ramping up and his sleep is eroding, I'm still loathe to make any changes. What if it doesn't work? What if things get worse? What if, what if?

We won't know what path to take until we get the Leelo's blood test results back next week. But any interim input, opinions, experience, or citations are welcome.

Photo: Leelo at Hayes Green Playground

Disclaimer: Don't rely on me for medical advice, duh! Also, I know plenty of people whose kids had positive experiences with Abilify. Just not -- really not -- my son.


  1. Good for Leelo, handing his blood draw so well! He's a tough little guy.

    We had Jaymes on Risperdal from age 3 (I think?) until last month (age 6. Took him off of it because he developed tolerance to it. His Psych is having us do a trial of Abilify. She had told me it was in the same family of drugs as the Risperdal, but a little different, whatever that means. We'll see how Jaymes responds to the new meds. They seem to knock him for a loop.

    Anyway, I barely comment anymore, but I still enjoy your posts and love to see how well Leelo has been doing!

  2. Hey Amber, no worries -- I'm also a good reader but an infrequent commenter. Thanks, yet again, for you input, and I hope all goes well with Jaymes and your kindergarten decisions.

  3. Stephanie6:22 AM

    I'm another long-time lurker, but had to decloak to mention how much Leelo looks like Mali in the second photo!
    Thanks for your years of insightful writing - our family's challenges are different, but you're my strong mama role model.

  4. It's long-time-lurker-come-out day?

    I'm delurking to offer that Seroquel led me to gain more than 30 lbs in 4 months, elevated my "bad" cholesterol and also my triglycerides. The weight gain included no dietary changes, though I have been working on LOSING weight for more than a year. As soon as I went on the med, the scale climbed in leaps and bounds. I'd also never had problems with cholesterol before - I'm not much of a meat or dairy eater, and there are no cholesterol problems in our family.

    So, yeah. Sorry to further muddy the waters. I just freak at the sight of the word Seroquel.

    Love the pic. Sorry I don't often say much... but I AM looking forward to meeting you at BlogHer!

  5. Oh, this is all so familiar.

    The ravenous appetite that Risperdal creates for Bud is difficult, but the thought of having to stop giving him Risperdal panics me. The key for us has been to manage the health-risk side effects by being hyper-vigilant about weight gain (I know - easier said than done. And I often fear that my constant attention to food is going to make him develop an eating disorder, but one mountain at a time.)

    As for anti-anxiety meds - Bud was on Zoloft for several years with good effect, but as he grew, his dose became less effective and an increased dose made him somewhat manic. We switched to Luvox (fluvoxamine), and the fluvoxamine/ risperidone combination has been great. Knocking repeatedly on wood. Incidentally, fluvoxamine is an SSRI that is specifically approved for use to treat OCD in kids.

  6. The thoughts on anxiety make sense to me. I can kind of feel his tension as he gets more and more anxious in chaotic situations.

  7. My son (8) was on Abilfy and Luvox. I thought the Luvox wasn't working, so I weaned him off. Not a good idea. A lot of OCD stuff I forgot about came back, as did the early awakenings. And, his eating was out of control. Much, much worse than when we first pit him
    on the Abilify. I realizes that the eation was partially an OCD thing. Back on the Luvix and all is well. The sedating effect is a nice benefit. His Abilify dosage is only 3 mg.

  8. Rode the link to your dec 08 post and got teary remembering how desperate I felt when my son was hitting me everyday. I wish I'd been reading your blog back then too.

    There is so much about parenting my son that I don't bother to tell anyone because none of them have kids like mine and I sometimes don't have the energy to walk them through my life.

    I am surrounded by sweet, loving friends who would likely do anything for me, and yet, I confess I sometimes feel more comfort from reading about you and Leelo.

    Thank you for your honesty and perseverance. I love your blog and I wish you the best in fine tuning the meds or whatever comes next.

  9. Hi, also delurking :) Not sure if I have commented before. My 7yo has been on Prozac for nearly 2 years. I do think it has helped quite a lot. It had an initial wow effect which tapered off after a few months. We had to increase the dose twice but he is still on a relatively low dose. He had almost paralyzing anxiety, afraid of everything, obsessing about his fears, needing tons of security items etc. It continues to help him, and he continues to have a lot of anxiety, but it's much more manageable. He had no side effects whatsoever (phew) and it did also help his sleep. I have no personal experience of any other meds. Best of luck!

  10. Use melatonin for sleep. No side effects.
    Use chelation to cure the autism.

  11. Nothing to offer in the way of experience with any of those meds; we're kind of watching you and a few others slightly ahead of us on the journey. ;-)

    As for the melatonin, I'm sure you already know that it is not a cure-all for sleep issues. nik gets it every night and still wakes multiple times. Has more to do with the interaction of multiple chemicals in the brain and how they balance or impede one another.

  12. @Stephanie, Leelo & Mali have similar body types, too. It's really funny.

    I am so glad to hear from the rest of you, especially the de-lurkers (hi!) -- this is such important information. I will definitely ask about Luvox.

    @Foresam, we did try melatonin, it wasn't all that helpful for Leelo -- though I know other people have had good experiences.

    I do not consider chelation a legitimate autism therapy. Details:

  13. Anonymous3:24 PM

    Keep on drugging him honey. Yeah, that's the answer.

  14. Please ignore the pissy troll. It's always the same Comcast-using person from Southern NH/Northern MA, who returns via typing "Leelo and his" into Google.

  15. Anonymous5:14 AM

    We have gone thru many differant medication cocktails over the years as the boys grew and changed. I think it is very normal, albiet very anxiety provoking for us parents.
    My boys have been on zoloft andit was great. We switched collegeman to luvox for years and then took him off as he seemed tog et worse, retured to zoloft and oh so much better.
    There are also mood stabilizers that have helped collegeman. A positive side effect from his anti-seizure meds, but when given to HSB for his ramped up anxiety, even in a minimal dose it was a disaster.
    WE also tried wellbutrin, remran for the boys at differant times.Horrible, horrible reactions.Yet for some they were miracle drugs.
    Unfortunately there is no test to see what drug will help or not. Hopefully one day there will be a blood test/genetic test that will let you know which is best, liek with anti-biotics today.

  16. Anonymous7:45 AM

    I used to take Seroquel (long story, won't get into it here.)

    I slept VERY well with it, and didn't notice any weight gain from it. So your mileage definitely varies-which is pretty much true with most of these drugs.

    Hoping for a smooth transition for you folks, if one is necessary.

  17. It's almost like medication roulette, isn't it? Sigh. Thank you for sharing your experience. I'm so glad Seroquel worked for you.

  18. Anonymous2:26 PM

    My son is taking Risperdal, too, on a very low dose for anxiety. It has given him that little edge before he goes off a deep end (which are now fewer and farther between).

    I know what you mean about tweaking a dose that works. It's scary and frightening, just as much as it did before we decide to medicate our children.

  19. We're running into the same roadblock with the Risperdal. My son did not do well on Seroquel. It really blunted his affect, and ho was just "out of it". Just something to watch for.

  20. We still have not yet gotten a blood draw for Charlie---he did it once and did well, but following efforts have proven far more difficult. (In part because he didn't know what to expect the first time---have now lost the element of surprise.)

    Charlie takes a couple of medications. He's been off of Risperdal since June with good results for his weight (Charlie also started to develop tics while on the Risperdal---it was time for something new, for sure).

    Taking Charlie off one thing and putting him on another was extremely difficult, I can't sugarcoat it! But you have a great great team and I know it'll go ok---and Leelo is the champ.

  21. What a trooper! I am glad it went so well.

    After much deliberation we finally put our 8 yo son on Zoloft last fall. It has helped him tremendously! His issues have always been SPD with severe anxiety. We didn't realize that he really had OCD as well, not completely understanding how it can manifest for young children. Initially he did have stomach issues and was sleepy, but it evened out after a few weeks on the meds. Taking the medicine has decreased his anxiety and has lessened his obsessive repeating. It has also helped with his throat clearing and finger picking, among other OCD-ish behaviors.

    Good luck with the medicine roulette, I hope you can find the right solution.

  22. I dont have any advice-since we havent hit that place yet-but I just wanted to say hang in there.

    Sorry not much help

  23. AspergerNinja, MommyDearest, Kristina, Lori, and Jo -- all the support, in all its forms, is so appreciated.

    @Kristina, we used the visual schedule to help Leo anticipate what was happening, and the near-chanting ("first needle, then sandwich") during the procedure to let him know it was going to be over soon, and that he had something to look forward to afterwards. But Leo is smaller than Charlie, and seems to be in a relatively compliant phase. I'm hoping it lasts. And I'm hoping Charlie lets you know how to wrangle a blood draw in the near future.

  24. Oh boy, I'm glad I found you.

    Been there, done that, bought the teeshirt with the meds. We've tried so many different treatments for our son and his anxiety (and behaviors) just kept escalating.

    Risperdol cause no weight gain (this boy is underweight, desperately so) but he BEGAN stimming for the first time and it has yet to stop, even 2 years after stopping the med.
    Lamictal - wonderful while it worked, he eventually grew out of it. This is when our sleep issues started.
    SSRIs - don't do squat for him. They worked for about a year (after we tried several) and then quit. We're weaning. They make him worse. Which is funny, because they made ME worse. I switched to Wellbutrin. So much happier.
    Clonidine - finally prescribed in a teeny dose after six years of little-to-no sleep. Best thing ever for our family! He is so much happier, is calmer and smiles more. Most doctors hesitate to prescribe this, but it is such a tiny dose. And because his behavior changed so dramatically once he started sleeping, it was worth the hard work to get it.
    Focalin - we hesitantly tried this because of his history with seizures, but he has been on it for six months and the results are astounding. A kid with SEVERE Adhd now sits and plays with toys. He smiles at us and makes eye contact. He is LEARNING for the first time! It's amazing.

    Melatonin didn't work for him at all. His brother, however, takes it successfully (also on the spectrum).

    People may criticize those of us who try medications, but when you try everything else (behavior therapy, specials diets, supplements, etc) and nothing works, what else is there? I'll never, ever again buy that nonsense. Meds, special programming and therapy is what this boy needs. Happy, thriving and growing.

    Sorry to be long-winded. You just made my day.

  25. Thank you thank you for your input. It's astounding, isn't it -- how differently our children respond?

    "Happy, thriving, and growing" - so glad to read it. I wish it hadn't taken so long to get there, but what a reward for persevering.


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