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Monday, June 25, 2012

Welcome to My Nightmare

We started giving Lily Tenex about four weeks ago to help her with some of her impulsivity. . . tooth grinding/spitting (which is much reduced now anyway)/heavy breathing, hand wringing, etc. Because she's tiny, the doctor started her out not with half a tablet of the lowest dose, but with a quarter. We ramped up as follows: 1/4 tab every night for a week at bedtime (to get her system used to it), 1/4 tab at breakfast and before bed for a week, 1/4 tab at breakfast and a half tab at bedtime for a week, and now we're at 1/2 in the morning and 1/2 at night.

I don't know what I've seen so far for sure, but one positive, that is invisibly disguised is that . . . well nothing seems to have changed. In terms of Lily's personality, joys and hatreds, she's the same little girl. And maybe she's even been a little more low key. This is a big departure from the stimulants experiment more than a year ago. Her potty accidents continue to be very low, sometimes none during a day, sometimes one or two. Her appetite is unaffected. Her sleeping seems mostly unchanged. Mostly.

Sometime after we ramped up to 1/2 a tablet at bedtime Lily started waking up in the middle of the night and calling us. Every night. This hasn't been a big deal for us because we put her on the potty, and then take her back to bed and she essentially falls back to sleep within a few minutes. Is it a pain in the ass waking up every night at 12:30 or 1:00 because Lily's awake? Kinda. Does it beat the shit out of the Chinese fire drill we used to do when she'd wake up, pee the bed and we'd eventually hear her moving around in bed and have to change bedding, get her on the potty, change her clothes, put her back to bed and get her settled down? Absolutely. She wakes, calls one of us (it's usually mommy), we arrive to a dry little girl who we take to the potty and then put back to sleep. I'd live with that arrangement indefinitely. Developmentally, it's a big step foreward. Lily is calling us and telling us 1) that she's awake and allowing us to help her 2) get on the potty. It's a win.

Last night I put Lily to bed around 9:00. It had been a long day for her, the details of which I'll have to cover in a different post. Bedtime for Lily is usually much earlier, with one of us (we take turns with the kids) getting her upstairs, teeth brushed, story read, on and off the potty and under covers by 7:45 or 8:00. Although she fell asleep in the car ride home from my parents' house, by the time we had her ready for bed she was wide eyed again, though clearly sleepy.

I lay next to her and stroked her hair, whispering her prayers to her complete with pregnant pauses allowing her to fill in the blanks.

"Dear. . . " I began.

"God," she completed.

"Bless. . . "

"Mommy and Daddy and Emma and Lily"

"Ayyyyyy. . . "

"MEN!"

"Very nice, Lily."

I recited my nightly litany to her. "Lily," I began, getting her attention, "I love you. I believe in you. I am proud of you." She accepted this silently, tired eyes gazing alternatively between me and the ceiling when her lids weren't drooping slowly over them.

She wrung her hands, picking at her index finger and I inserted my finger into her palm and she clutched instead at that, stopping without protest, her body calming. We lay like that for fifteen or twenty minutes. Leslie came in to wake me from what she imagined must be my slumber and Lily looked up at her. Leslie backed quietly from the room. It doesn't typically take that long for Lily to find sleep and she was very quiet.

When she finally did shut her eyes for the night, I rolled as smoothly as I could from her bed and put up the railing. She moves quite a bit in the bed and when the rail's not there, and even sometimes when it is, she finds herself on the floor or almost on the floor.

I went downstairs to pack lunches (although I took a lengthy pre-work break to watch Season 2 episode 6 of Game of Thrones) while Leslie dried Emma's hair from her bath. When Emma was ready for bed I went back upstairs and gave her a kiss goodnight while Leslie read Half Blood Prince to her before bed. I returned downstairs and started making lunches.

Around 10:15 Lily started to whimper. She'll whimper as she tries to get comfortable sometimes. When she's sick that whimpering can turn to coughing and that coughing turns to vomiting, but I really didn't expect that last night because she's been pretty healthy. I listened as I worked. Her whimpers got louder.

I finished up the lunch I was working on and resolved to head upstairs to check things out. During the time it took me to formulate that plan her whimpers ratcheted up to yelps then screams. I had no idea what was going on, but started sprinting for the steps. I took them two at a time and pushed open the door to her room, not knowing WHAT I would find.

The first thing that struck me was that the nightlight had burnt out. Had she awoken and gotten scared because it was so dark? I didn't know, but in order to see I had to turn on the overhead light in her room, flip the rail down and sit next to her whispering words of comfort, hoping to get her settled down and back to sleep. Her eyes squeezed shut against the too-bright light.

But she didn't settle down. She kept alternating between pained whimpers and shrieks of terror. I picked her up wondering if she was laying on her arm wrong or something, but she wasn't, and I patted her back telling her it was a dream (had she had a nightmare? I had no idea) and that it was okay and that I was there and it would be alright. She didn't calm down.

After a couple minutes I put her back on the bed and tried to get her to drink water. NO! I asked her if she wanted mommy but if she said yes, I couldn't tell. Was there a perceptible calming? It wasn't apparent to me, but as she lay on her back and I talked she did calm a little. I told her I was going to get mommy, then crossed the hall to where Leslie had fallen asleep with Emma and woke her, telling her I needed her.

TYPICALLY that means Lily is throwing up because she's had a coughing jag, but Leslie blearily crossed the hall and I explained. She lay down next to Lily and tried to calm her. I sat next to them both. I can't remember whether Leslie asked for it, or I just noticed it, but Poopers, Lily's stuffed puppy, was in her swing, and I retrieved it and handed it to her. She was still sobbing and whimpering. Leslie asked if I had a blanket for her and I said no, but grabbed one from her drawer.

We tried asking about scary dreams but got nowhere. Eventually I asked Lily what a puppy says and Lily responded through sobs, "Woof woof." I smiled encouragement and continued.

"That's right, Lily!" I was being uber-upbeat. I hadn't really wanted to be high energy, thinking that it would wake her up and get her too alert to get back to sleep, but nothing else had worked, and calm happy awake Lily beats the shit out of sad horror-stricken sleepy Lily any day.

"And what's a monkey say?"

"Oooh ooh, ee ee," she replied.

She had calmed dramatically. I had no idea why. Was it giving her something to focus on? If it was a bad dream was it just distracting her from the memory by giving her mind something else in replace? No idea.

"Do you want your monkey?"

"Yes," she replied meekly.

I got her monkey and handed it to her.

"There's pink monkey, Lily. What color is his coat?" (I swear that question isn't as stupid as it sounds. He's a pink monkey, but he has a coat that's green)

"Green," she said. She was almost herself again.

"Good job! What color is Poopers' hat?"

"White."

"And?"

"Red."

"Yeah, Poopers has a white and red striped hat!" I started thinking about how to get her back in the mood to sleep, "Poopers wears his striped hat to bed, Lily. He sleeps in it."

Leslie told me later that at the mention of sleep Lily started getting agitated again, but we moved on from it into safer waters, making. . . conversation, for lack of a better word until Lily was calm.

The whole thing freaked me out more than a little bit.

Leslie stayed with her as I kissed her on her head and told her I loved her. I replaced the 7.5w nightlight bulb with the lowest watt bulb left in the house (25W) before I left. It was way too bright, but I figured it beat the alternative. She fell asleep a short time later and Leslie put up the rail and left her room.

"What the hell was that?"

"No idea."

We talked about the idea of nightmares, and how her response to the distraction seemed to have worked, and to remember that little trick in the future. We wondered whether the bulb burning out had made it worse. Really though we have no idea. I've heard of kids on ADHD meds (but this was stimulants, I thought) or Melatonin having nasty nightmares. Lily never has.

"When it's time to meet with Dr. Cheerleader, we're not going to the next higher dose," Leslie said.

"What do you mean?"

"Well, before we got to the 1/2 tablet at night, we were seeing some good effects but no bad ones. She's more tired at bed time, and she goes through a sleepy spell in the morning, but nothing bad. Now that we're on 1/2 tablet, she's waking up every night, and napping in the afternoon, and maybe her body will get used to it, but right now I don't think we should go to a higher dose."

We don't know whether the nightmare was medicine-induced or not, but it's the first one she's ever had (if indeed that's what last night was), and we're looking for what's changed. Her big sister made her share of tearful treks down the hall, fleeing nightmares to comforting parents; maybe Lily is just at that stage in her life where she's starting to develop fears that are capable of manifesting themselves in dream form. Or maybe it's the medicine.

I don't know, but if it's a side-effect, the sheer terror she went through last night is not worth any amount of impulsivity abatement. We have an appointment on Wednesday with Dr. Cheerleader (assuming I can find her office), so I'm keeping an open mind until then.




Happier moments in her bed

30 comments:

  1. I'm glad to hear that Lily's slep patterns are improving, and I'd just like to say that you guys are doing a great job.

    And managing meds can be tricky. It can often be trial and error, so if 1/4 tablet works, then only give her that amount. just talk to your doctor about it so she's on point with you.

    I hope everything goes well.

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    1. I am reading your blog for the first time. It is crazy how you automatically feel connected to people who are going through or are going through the same things you have gone through. I just recently starting writing notes about my sons Autism it has been a great form of therapy for me. My husband won't even read them. I am happy the two of you take care of your children together, how wonderful that must be. I am envious. I commend you both for also being careful about meds. Dr.s are so quick to write those Rx's. As I was told "It will make your life a lot easier." Keep up the good work and God Bless you Both....

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    2. the blogging community has been great, and blogging has been wonderful therapy for me. . . reinforcing and great for keeping spirits up. Thanks for reading!

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  2. I'm so sorry. Having kids on meds for any reason is nervewracking and I can remember going through the same "Is it the meds or is it just Charlotte?" routine. I hope things settle down for all of you!

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  3. :( Poor Lily. So hard when they can't tell you what is wrong. Meds are so tricky, and we have def had our share of side effects. K was on Tenex for a bit, until the day the school nurse called and told me her blood pressure had dropped and she was as white as a ghost. It was scary stuff...the kid could barely sit up. And, yeah, no amount of abatement is worth the really bad side effects. Hopefully it was just a one time thing for her...

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    1. Yeah, and it IS a blood pressure med, so that totally makes sense.

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  4. Yipes. That sounds like a scary experience for everyone. I can still remember nightmares I had when I was three. Not to wish bad dreams on anyone, but I do hope it turns out just to be an ordinary scary dream and not anything to do with the medication.

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  5. The hardest part is trying to figure out the cause. Leslie sounds like she has very strong instincts and data to back it up. That's the best you can do. Toots had bad, bad side effects when I first gave him Melatonin and I learned from Jen (^^) that it can have side effects even though it is not a prescription med. I took him off for a while but he was going to be at nearly midnight and getting up at 7:30 so I cut his dose in half and it seemed to do the trick.

    I worry about teeth grinding in Toots just like you do about Lily. I wonder if it is associated with the night seizures he has but I doubt it. I too grind my teeth sometimes. Maybe she was grinding and hit the wrong spot and hurt her jaw. I've done that before and it is painful. I would think it might be hard to explain, especially with the communication difficulties, sleepiness, and a hurt jaw...

    You know what's best. Well, at least once you get there, you'll know best. ;) Maybe you should ride with Leslie (or at least put on your running shoes...)

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    1. Bah! I have good instincts too!!!

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  6. Oh, that stinks. Lily's night issues last night are quite reminiscent of Tate's. Although, we've always had them. I wish she had been able to tell you what had happened...it's so hard when we can't get to the crux of the matter to fix it. Glad that she settled down and was able to sleep a bit. Good luck at the doctor this week!

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    1. Just going to try really hard to remember Poopers says woof woof in case it happens tonight.

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  7. Could it have been a night terror? It's not the same as a nightmare, and often includes sitting bolt upright and screaming. Pretty common for kids.

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    1. Common or not, it's a first for Lily. . . ever. So we still wonder. . . is there something different that might have "caused it".

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  8. Yikes. Poor kiddo. Poor you & Leslie.

    I went through a phase of sleepwalking that scared the crap out of my parents. No idea where it came from and it seemed to go away on its own. My mom still tells the story of my dad finding me one night in their bedroom in the middle of the night patting their bed, sound asleep. When he asked what I was doing, I said, "Your bed's on fire, I have to put it out." He apparently was VERY CAREFUL not to wake me up and put me back to bed, because he read somewhere if you wake up a sleepwalker they will lose their mind so of course he believed it. He still mentions the time I tried to burn him alive in his bed. I think he's kidding. Probably.

    I hope it's better tonight. Sending good, restful thoughts your way.

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    1. hmm. . . are you SURE he didn't wake you?? #seewhatididthere

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  9. Been there recently too. Hang in there. When we had a similar experience - started to see negative side effects as we ramped up dosage - we also slowed down. Doctor was patient and agreed to go that route. Ultimately, that particular med was not for us.

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    1. that particular med, Tenex? Or that particular med that you were having issues with? (ie, same med?)

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  10. Nightmares are the worst. I used to have them regularly as a kid. I can even remember some to this day - one involved being bitten by a million tiny alligators. It could be the medication. I have crazy dreams when I take melatonin.

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    1. i used to dream about thousands of snakes draped everywhere.

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  11. I love your bed time routine.

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  12. ugh. hang in there, matey. getting that dosage right is key.

    we use a rail too, but i saw this on reddit today and it seems like a good idea:

    https://imgur.com/jZjAR

    -jon

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    1. I have a noodle at home too. I don't know if that would be enough to keep her from falling over the edge. . . but I also think it might be. . .

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  13. I'm in awe at the patience you and your wife posses. I hope the sleep issues resolve themselves.

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  14. Getting ready to start Katie on Intuniv. Same drug as Tenex in extended release form. I've read nothing about nightmares. GREAT...as if my kid doesn't have a hard enough time staying asleep. *sigh* I guess we'll see how it goes.

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    1. We talked to Dr. Cheerleader about it yesterday. She said that although meds affect different kids differently, she's never heard of anyone getting nightmares from Tenex. She DID indicate that this is about the time in her development (or age. . . not sure which, or if it makes a different) where "night terrors" are common.

      Kim referenced it in her comments above, and I sort of just blew it off because I really didn't know what "night terrors" even were, having never experienced them myself (or my older daughter).

      In summary. . . I don't think you need to worry about it.

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