Sunday, July 10, 2011

Haldol- adverse reactions

Wednesday, Tommy was admitted into the psych unit.  That afternoon, after speaking with the team of doctors, we decided to remove the Risperdal and replace it with haldol and cogentin.  We stayed in the hospital for 48 hours watching for side effects.  The entire time we were there, every WAKING  moment he was watched like a hawk.  We felt lucky.. no side effects.  (side effects can be found here )  

After getting discharged from the hospital, we came home and packed for Tommy's trip to the hotel (something he had earned a while back)  Again, I was watching him like a hawk.  He seemed so good, when he was awake.  It's SUCH a sedating medication.  We thought the sedating effect would eventually  taper down once he metabolized the medication.  

Yesterday morning, we returned from the hotel.  I was exhausted.  From going back and forth to the hospital, then from the hospital to the hotel stay, then finally home.  I was spent.  Tom offered to take care of things and let me go upstairs and rest.  Of course, I took him up on that offer.  Well, Tommy was still tired.  Even though he had only been awake for 2 hours.  So he comes upstairs and crawls into my bed with me.  I was physically tired, but not so much SLEEPY tired.  I had just planned on laying there and reading one of the books that were in my pile of UNREAD books.  Instead, I was intrigued at how QUICKLY Tommy fell asleep.  It literally took him about 10 seconds to get the covers on him and be out cold.  I laid there and just watched him.. i love watching him sleep.. he's so peaceful.

Then it started.  All of the side effects we were watching for, were happening when he was SLEEPING! We were told to watch for mouthing movements, facial twitching, stiffening and involuntary movements *twitching*  He's doing them all.  It SERIOUSLY looked as if he were dreaming.  My dogs do that, they get all crazy and act like they're running and they'll even bark in their sleep.  Tommy was doing it ALL! Even making noise.  Hmm.. But he could be... dreaming?  Well, he awoke and seemed fine the rest of the night.  We kept an eye on him and.. he SEEMED ok. Again, he had his meds (with haldol) and went to bed.  I checked on him when He looked ok. Snoring away.  Tom checked on him.. looked fine.  Well, I got up in the middle of the night, and went to check on him and he was like.. kicking his legs.  Not anything like a seizuer or convoltions. Again, when you see a dog run in his sleep.. similar to that.  And with his hands too.  I went in and rubbed his back, calmed him.  Decided to stay in there just to keep and eye on him.  This was around 3am.  This went on until he finally woke up almost JUMPING out of bed around 7:30.  

That was it for me.  I was scared. Got the discharge paper and called the number to his office which sent me to the main hospital for the on-call psych. She was reading over the file, and said we could do one of two things.  We could just stop, give no more and talk to Doctor on Monday or, we had a LOT of room to play with the cogentin. It's a side effect blocker, he just may need more.  I got off the phone with her, and Tom and I sat there and played with "what would DOCTOR tell us"  Well, he would agree with the oncall, and give a double dose of the blocker with the Haldol.  So we did.

Breakfast goes fine.. he's really focused on wanting to help me.  Commercials that would usually set him off, he just tuned out.  Only one he had to change the channel once. Soon after breakfast he said he was VERY sleepy. Again we expected that.  I ask him to lay on the love seat (no couch) so I could keep and eye on him.  He complies.  After about 45 minutes, I couldn't take it anymore.  It was torture watching him twitch.  Twitch so much that he'd wake up every 10 minutes.  Wake up like trying to INSTANTLY GET UP.. like he was going somewhere.

F. U. C. K. 

All we can do is watch.  And just help him sleep.  He NEEDS some restful sleep.  He seems to last longer sleeping if you rub his back through the occasional twitching.  Tom takes a 3 hour shift so Brianna and I can go grocery shopping.  There's still more twitching...comes and goes.  He's just really really tired.

I get home, and he's awake. Just waking up. I had a crap-load of groceries.  Tom and Brianna are bringing them in while I am sorting and wiping down the inside of the fridge before getting things put away.  Next thing you know, Tommy's helping.  He's got the whole snack drawer organized.  I decided to change up  his dinner (he's been eating the same thing for dinner since last Thanksgiving. Chicken Breast tenders by Purdue, mashed potatoes and stuffing with a side of cucumbers.) Showed him the new hot dogs.  His reply "can Tommy lay in the Traverse when mommy cooks hot dogs?!" Ab-so-freaking-luetely.   There's still random twitches we're seeing while awake. Sort off.. it looks like he's dozing off occasionally.  Really difficult to explain. But they eventually went away closer to dinner time.

At one point, we were watching this, Sumo Wrestling Tournament on the Japanese channel with us.  45 minutes.. of nonstop engaging with us.  ugh! this is so frustrating!!! 

Then we were faced with the ultimate.  Dinner is over.  What do we do.  Of course we're going to give him his regular meds, but, Haldol. Blocker. What to do.  I know that your initial reaction is to STOP.  There have been times in the past (with Tommy, AND myself) where side effects sometimes will go away the more your body metabolizes the med.  We decide to continue.  Well, here we are.  I'm laying in the bed next to him.  When I started typing this, i kept stopping to rub his back.. making sure we are ok (we have a dialogue that we go through.. thumbs up thumbs down etc)  He was very restless.  Rolling back and forth. Mostly body twitching, not so much facial.   Now, as I am wrapping this up.. he's sacked OUT.  Hasn't twitched  in some time.  Just kicked off the blankets saying he was hot.

I'm so tired of thinking.  I hate seeing him go through this.  I hate not knowing if we're doing the right thing.  I HATE that he can't communicate to me what he needs.. what he wants.. even what he FEELS.  

All I can do is.. lay here with him.. and continue to watch.  

In ALLL of this.. ALLLLLL of everything going on... there ARE positive things happening.. He's showing levels of focus that we've never ever seen.  

Is it the HALDOL??? Or, is it the coming OFF of Risperdal?!? 

Never ever ever have I let 2 changed happen at once like this.  Under the circumstances, we really had no choice.  The one has to replace the other.  *sigh* my brain hurts.


  1. I don't know what to say. You're doing the best you can do, and that's ALL you can do. My thoughts are with you.

  2. Here's my initial impressions and questions - all while not being in your shoes - so take it for what it's worth:

    1) Why wasn't there a doctor ON CALL 24/7 for you to call??

    2) Show the doctors/therapists/specialists this blog post so they know what your life is like right now. You can't keep this up forever. You are going to BURN OUT.

    3) Have every specialist on this drug you can think of accessible for you to consult.

    I cannot possibly imagine what you're going through. It must be so hard.

  3. Hi CMarie :)

    1- yes we had access to the on-call psych/doc. We utilized them several times. With autism (as you must know) adverse reactions with our guys can be VERY different than NT people. The doc's are perplexed that he's only showing the side effects while sleeping and NONE while awake.

    2- I constantly take notes. Thats why I let go of my neuro because he refused to read them. WHat I type here, I print for the docs. Been doing that for years. I just don't "publish" all of my notes for.. private/personal reasons. If one thing ANY new parent of autism may learn from me, DOCUMENTATION IS SOOOOO IMPORTANT!!!!!!!!! I've got endless video of meltdowns, odd behaviors, great behaviors etc. I've had docs NOT believe certain behaviors have occurred. DOCUMENTATION!
    I burn out a LOT. I have a wonderful husband that steps in. We're currently working on getting assistance in the home 1-2 times a week. Thats a process though.

    3- ive got a few docs, social workers, psychs at my disposal at his school (that he hasn't attended in months) as well, as a new team from the Board of DD. Everyone WANTS to help. Everyone SUSPECTS as puberty goes, so will a lot of these behaviors.. hopefully. There's nothing to base this off of though. Puberty effects our kids differently. Tommy was on a FANTASTIC road to being easily employable. Magnificent skills. All, down the tubes because he's lost ALL coping skills.

    It is hard. SO very hard. Every night, I cry. I sob, wondering how i am going to get through this. I can't imagine another another 3-4 years of this (puberty) I struggle with.. is this going to be the rest of my life?! But, then I go to bed. I rest. And I wake up to his smile. And I am PREPARED to get through the day once again. We're mom's. it's what we do. And for now, luckily, I am able to do it all. Until I can't, I just keep pushing on. When the day comes that I CAN'T get through it.. i'll get through that too. You just do.. what you gotta do. :)

  4. This hits home b/c Katie is like this when she sleeps, and I only noticed it since she went off the Abilify and went on the Celexa. I emailed her neuro who told me we ALL move in our sleep, don't worry, but Katie sleeps with us a lot, and I have never noticed the constant movement/twitching before. We have an appt next month, so I am just waiting it out, but, yeah, how restful is sleep when it is like that? Ugh....

  5. I know Jen. I have been watching Tommy life a hawk these days. I freaking HATE it. He's doing a lot of tossing and turning (he sleeps with me on Sunday nights. Hub works a midnight shift so its a treat for Tommy to sleep in mom's bed) but it doesn't wake him up anymore. Tommy is VERY sensitive to meds. He usually requires half the dose of whatever is recommended. Considering his size, Docs find this very fascinating. Up until now, his biggest side effect we've ever had to deal with is weight gain (from Risperdal). Zoloft made him depressed. VERY depressed. I've noticed a trend that with kids on the spectrum, SSRI's tend to have adverse reactions. Something I learned when Tommy was in the hospital.. Tommy was put on SSRI's because he's very ocd when it comes to stimming. As he approached puberty, it got a LOT worse. If someone bumps him, he has to kinda, UNbump them. He does it with things he touches. SSRI's are only effective 30% of the time. They're not used to completely STOP the obsessions. If they decrease the behavior by 30% then it can make it tolerable, or give the person the ability to work THROUGH the behavior. I was really blown away by that. I have to remember that there arent "stop being aggressive" pills, and "stop spinning in circles" pills. I tend to WANT the pills to do exactly what i want them to do. Today is day one of weaning him off of the celexa. (trying to get rid of meds that are the least important or not doing anything- we've just been on them forever)Let the fun begin!

  6. I think that is what I have to remember...there is no magic pill to make it all go away. I keep waiting for Katie to stop being totally compulsive about food, or stop beating the crap out of Ben...I need to look for more subtle changes. This new drug I haven't noticed anything from (the Celexa). I did notice the ADHD drug made her rage, and Abilify made her chunk out. The Celexa def makes her sleep different. What is weird about K, is that she seems to sleep HEAVY...can't wake her...but it doesn't seem to be restorative sleep b/c she is ALWAYS tired. I need to talk to the neuro in Aug. With that whole mito-Autism stuff, I wonder if she doesn't have some mito dysfunction that is causing her inability to tolerate heat, her endurance issues, and her tired issues. Clearly she doesn't have mito disease, but maybe something isn't working right. Of course the dr will probably look at me like I have 5 heads and think it's all WOO.

  7. Thats how Tommy has been for 2 years with sleep!! He just sleeps ALL the time. As soon as his head hits the pillow BAM he's out. It's been the cause of ALL of his problems at school. He refuses to work because "im just too tired". He'll go into the sensory room and conk out. Food issues are RAGING here. Always have been. He will eat nonstop. I really don't think there is a limit to what he will eat. Right now, he's going through a condiment phase. I caught him in the fridge the other day. At half a container of cool whip. 2 hours later he ate a full container of ranch veggie dip. In the past, he's drank a jar of dill pickle juice. Squirt ketchup into his mouth. Weird stuff. I told this to the psych yesterday and he just giggled. These meds cause hunger usually. I know that... im just baffled with the condiments. So, the alarm is back on the fridge. Now when you open the door, alarms go off lol THAT SUCKS!

  8. I need an alarm. Our fridge is such that the lock things don't fit. We have locks on the pantries, but we forget to lock them a lot since we are in and out all the time. Ugh. I think we are just going to keep a locked box in the basement with snacks and try to control it that way. It sucks b/c it means Ben, who is totally reasonable about his food intake, can't just go get a snack like a normal person. Of course, I could probably use the snacks hidden away, too..ha.