I'm happy to report that we seem to be past the worst part of Operation Wean Raya Off Amitriptyline. (knock on wood) If you missed the first part of the story, click here. She has been MUCH better the rest of the week after spending the ENTIRE day Wednesday crying. I have always been pretty vague with information about the medications she's on, but since one of the main purposes of this blog is to share our story with others who might be having similar experiences, I decided to go into a little more detail about this.
For starters, amitriptyline is not a drug that can be discontinued abruptly. If it is, there are risks of heart arrhythmias and other serious complications. Because of that, we tapered her off of it over the space of about a month. She was officially finished with it on September 4th.
When I talked to the nurse on Wednesday about the problems we were having, she told me that the doctor would probably want to put Raya back on the medication and that she'd talk to her and call me back the next day. I talked to her Thursday and she said that the doctor had written the prescription but wanted to know how things were going before she sent it in. I told her things were moving in the right direction but that it was hard to tell since we had been out of the house the whole day for Great-Grandma's funeral and that I wanted to wait it out and see how that night was. The doctor said that was fine and that I could call back Friday and let them know whether we wanted the prescription filled or not. I decided to wait and see how she did at OT Friday morning and then call. It went great, as usual, so I felt like we could wait it out over the weekend and see if things improved. I really felt like putting her back on the medication would be giving up on her, and that going back on it would be a slippery slope to her being dependent on it. I was afraid that the longer she stayed on it, the harder it would be to get her off, so we decided to let her tough it out, and we definitely feel like that was the right decision.
There have been a few major areas that have been affected by stopping the med: social awareness, sleep (partly due to increased reflux), eating, and moodiness. (keep reading to the end, I'll explain why she was on it in case you missed that part of the story)
She is still a lot more mellow than usual and she gets really quiet around people outside our immediate family. Today we went to listen to a cousin who just got home from serving a 2 year mission for church speak about his mission. Raya spent the whole time there sitting quietly on her grandma's lap, which is SO out of the ordinary for her! I'm not sure if it's an anxiety issue or if her inhibitions just aren't as low as they were on the medication but she was happy and quiet all the way through church. :) When we're at home or not around anybody outside our immediate family (or when she's distracted enough to not notice other people) she chatters and plays and is very vocal. As soon as someone else is around, even if it's one of her therapists that she's known for several months or someone in her extended family, it's like she suddenly forgets how to talk and her lips just clamp shut. She doesn't seem to have anxiety or seem like being around other people upsets her, but she used to be a lot more friendly to people than she has been lately.
For the most part she's been sleeping better since Wednesday too. She gets a little fussy if we give her the other meds after she's already asleep and then she usually fusses a little a few minutes after her night feed starts. That may just be a venting issue since we haven't been venting her at all lately. She's not tossing and turning as much as she was earlier in the week. I've NEVER seen a little kid flop around in their bed like she was. The poor girl just seemed like she was crawling out of her skin and couldn't get comfortable. I could hear her swallowing stomach contents that were working their way up and she was doing a lot of the little coughing that often accompanies reflux too. That has gotten better over the past couple of days.
She's slowly starting to go back to eating crunchy and rough-textured foods again too. I made her some cream of wheat yesterday morning and she still won't touch that. I, on the other hand, thought it was delicious. :) The strangest part about her "eating habits" in the past week is that she will often ask for food that she likes and then refuse to even taste it. She didn't do that before, she would at least take a couple bites even if all she did was spit the food back out. Hopefully she'll find something that she wants to eat again soon.
We went out to dinner at Olive Garden last night to celebrate our 10th anniversary, which was on Wednesday, i.e. the day she cried all day long and then we had the viewing for Raya's great-grandma's funeral that night. Not much room for celebration that day. :) Since we had no babysitter, we took the kids with us. They're part of this marriage too, right? :) Raya ate part of a slice of fried eggplant. (when I say "ate", I mean that she took bites, chewed/dissolved the breading & swallowed some of it, and pocketed the actual eggplant) It was rather disgusting to watch but I didn't care since she was actually trying to eat something again. She also took some bites of breadstick but I made her spit it out when she almost choked on it. Donny gave her a couple tastes of lemon which she evidently doesn't care for. I guess her tastebuds do work a little bit. :)
Her mood swings have decreased a lot over the past couple of days too. She was having CRAZY mood swings that were way beyond that of a normal almost 2 year old. She would be perfectly happy and playing and then for no reason at all, the next minute she'd be flopping down on the floor crying or clinging to my legs crying. She still cries a lot in the car, which she never used to do at all. Being strapped into something (carseat, stroller, high chair, etc) has always been a comforting thing for her but this week she doesn't seem to care for any of it.
One thing that has been hard this week is that she will start crying but then make no effort to express why she's upset. It's like in the heat of the moment she suddenly forgets how to communicate and all she does is cry. I'm not concerned about it because she does still communicate with us when she's calm, but I hope this part doesn't last long because it's very frustrating.
She's also been playing with her brother & sisters more in the past couple of days. She gets sad if they go upstairs to play without her but gets really excited when she sees them and they give her attention. She's getting better at entertaining herself again, thank goodness. :) Here's a picture of Raya playing with her "big" sister (who she's catching up to in weight very quickly) yesterday:
And there you have it. That's what it's like to take a 22 month old off of an anti-depressant that they've been on for almost a year. Just to clarify, she was on it because it helps to alleviate retching and gagging in kids with chronic vomiting and in kids who have had fundoplication surgery (anti-reflux surgery) because retching and gagging are common side-effects of the surgery, NOT because it's an anti-depressant. Raya didn't have the surgery but she woke up every morning dry heaving and/or vomiting and usually did it late at night as well. She was put on amitriptyline out of desperation while she was in the hospital last October because her poor little body needed some reprieve from the chronic daily vomiting that had gone on for almost a year. I have absolutely no regrets about putting her on it and I feel like it has been a great help to her.
That being said, it did its job and we, along with her GI doctor, decided it was time to discontinue it. I was so occupied with watching for the return of her gagging and vomiting that it never even occurred to me that she might have other problems with coming off of it. I wasn't even thinking about it being an anti-depressant because I've always thought of it as "Raya's anti-puking med" so I didn't think about her having trouble with her, um...mental state. Things seem to be slowly coming back together for her and I think she'll be fine. The changes in her personality have left me wondering if the Raya that we've had for the last 11 months was just a hyperactive, hopped-up on anti-depressants version of her and not really her true personality. I never felt like there was anything wrong with her and we loved the wild & crazy Raya, but you can bet your booties that I won't complain if she stays mellow enough to stop climbing on top of the kitchen table and will sit quietly for more than 1.5 seconds at a time. :) And heaven help us when it's time to wean her off of neurontin.
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