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Wednesday, October 9, 2013

New adventures with Periactin

Ready for story time? (if not, then skip to the row of *************** a few paragraphs down) This one is about a little medication called Periactin. Many moons ago when I took Raya to Ohio for motility testing, the motility specialist recommended a medication called Periactin (generic name: cyproheptadine) that he felt might help her. Periactin is an antihistamine like Benadryl, and just like Benadryl, it has several possible side effects. One of these possible side effects is in increased rate of gastric emptying, which can in turn increase appetite. The reason the motility specialist felt that it would help Raya was because at the time, she was vomiting several times a day despite being fed directly into her small intestine and having her stomach drained 24 hours a day, as well as being on 2 or 3 other medications to attempt to help control the vomiting. He felt that making her stomach empty faster would help relieve some of the sensations that were causing her to vomit.

As is the case with most medications used for motility, the effect on motility is not the intended purpose of the drug and not everyone who takes it experiences the side effect of increased motility & appetite. (motility meds kind of stink, to be honest) Another down side to using medications for off-label purposes is that when the effect you're trying to get is only a side effect, you often end up experiencing the OTHER side effects of the medication, either in addition to or instead of the one you're hoping for.

We were not able to start using Periactin until almost a year after our visit to the motility specialist because antihistamines are not approved for use in children under the age of 2. Although some doctors do prescribe Periactin to kids under 2, ours did not feel comfortable doing that and we respected that. Once Raya turned 2, we decided to give it a shot in hopes that it would help her want to eat more. We knew that drowsiness was the most likely side effect of Periactin, and as such, we were instructed to give it to her before bedtime. That was when we were introduced to one of the OTHER possible side effects of Periactin: insomnia and restlessness in children. It's funny now but at the time, there was really nothing funny about a 2 year old that was awake and angry at 2am demanding to watch Cake Boss on Netflix. (except for the irony of a kid who didn't eat wanting to watch a show about food, that was pretty funny even then) Periactin is most effective when it is cycled on and off, so we did 5 days on and 2 days off or else 4 days on and 3 days off. We found out that each time we cycled it, the side effects we saw were slightly different. They included insomnia & restlessness, drowsiness, extreme moodiness, anger, and a ravenous drive to eat (which was what we were going for). We didn't see all of them at the same time and it felt a bit like playing Russian roulette because we never knew what we'd get next.

In spite of the not-so-pleasant side effects, we actually did see some really great benefit from it. I wrote in one blog post that she had eaten over 300 calories for 3 days in a row, and that the variety of foods she was eating had increased quite a bit. It was really exciting to see a kid who had never eaten even remotely that much and had very little (if any) awareness or understanding of the association between hunger and eating suddenly wolfing down 300 calories a day. Sadly, most of the foods she was eating then are no longer things she can eat because of food allergies, and she got sick shortly after that with a sinus infection and has not eaten that much again since then, but the point is, Periactin CAN make a difference in a child's drive to eat.

We used it for a couple of weeks and then Raya broke her arm and we had to take a break while she had the cast on her arm because I couldn't stand having it be covered in stinky sour cream, which was her favorite food at the time. After the cast came off, we started up with it again. She broke her arm again a few weeks later but didn't have to have a cast on it that time so we continued the Periactin. After about 4 months, we came to the decision to stop using it due to her lack of oral motor skills. It wasn't that she didn't have decent oral motor skills, but they were not sufficient to keep up with the hunger drive that Periactin was causing (when it worked). In addition, she was still working through some significant oral sensory issues that made it difficult for her to eat anything other than her preferred foods & textures. Often, she was hungry but became frustrated when she couldn't eat enough to satisfy her hunger or we couldn't find anything for her that she wanted to eat. In the months that followed, we finally identified several food allergies that we had suspected but hadn't been able to confirm, which severely limited her food choices. Actually, it pretty much eliminated EVERYTHING she had been eating. No sense in increasing a kid's appetite when you take away all their food.

Fast forward to the present, and we have a girl who is almost 4 and has made tremendous progress with her oral aversions, oral motor skills, and sensory issues, and who actually likes to eat again (as long as it's certain foods that meet her preferences at that given day & time...) AND who still struggles with less than stellar gastric motility. This girl still requires large doses of 2 different types of reflux medication and a medication for pain in her digestive tract in order to be comfortable, and those medications do nothing to help with the slow rate at which her stomach empties. With the prospect of doing surgery for the delayed gastric emptying on the table, I decided it wouldn't hurt to give Periactin another go.

Now that I've turned that into a lengthy narrative...we started Periactin again yesterday after about 18 months off of it. The instructions on the bottle said to give it to her at bedtime, but given our previous experience with Periactin-induced insomnia I decided to take my chances on daytime drowsiness instead. It was quite a day. Thank goodness I decided to try this little experiment while she's off on fall break from school because she was moody as heck all day and most of the time, just flat out angry. Maybe "hangry" is a better word. (you know, hungry + angry) She was hungry, but refused to eat anything but potato chips. I offered her different foods all day long and she was still getting her tube feeds, but all she wanted was chips. I cut her off after one serving's worth because she doesn't need to eat chips all day. It was frustrating to have her refuse everything I offered her because what good does an increased appetite do if she refuses to eat anything?!

Finally in the afternoon she asked for a fruit cup. The only problem was that we didn't have any fruit cups. I offered her an applesauce cup but she didn't want that, she wanted a "FRUUUUUUIT CUP!!!!!" {insert angry growl}, and it couldn't just be canned peaches that I cut up and put in a bowl for her. (I asked.) So I did what any good mother in that situation would do: recruited one of the other kids to help me deceive her.  I had Cole hide in the pantry (which is nothing more than a closet, it's not a walk-in pantry) and chug a partially-opened applesauce cup. He covertly handed me the empty cup and I carefully wrapped it in a hand towel, carried it over to the sink and rinsed it out. Then I put it back in the towel and distracted Raya for a minute. I can't remember how but I got her to leave the kitchen long enough for me to get out a can of peaches & open it. She was clinging to my legs and whining the whole time I was cutting up peach slices (with the plate pushed back to the back of the counter where she couldn't see it, of course) and carefully filled up the empty applesauce cup. I poured a little of the juice from the can into the cup, pushed the aluminum lid back down, and covertly took it back to the pantry and told her, "Oh, look, there IS a fruit cup in here for you!" My little covert operation almost failed when she insisted on getting the fruit cup down herself, but I saved it by offering to open it for her, which meant that I had to take it from her. She watched me peel the aluminum lid off, got a fork out of the drawer, and for the first time all day, happily walked to the table to eat.
After that I had to high-five Cole for helping me out. He was pretty excited that it worked. She only ate about half of it so I put it in the fridge for her to eat later.

Aside from being "hangry" all day, the poor girl was SOOOOO tired all day long. I'm sure that contributed to her moodiness. At one point, the big kids hurt her feelings and made her cry and I thought maybe if she laid down she'd fall asleep. I let her watch Daniel Tiger's Neighborhood on the iPad in my room hoping that she'd doze off. Of course that didn't happen, but she did spend about the next 3 hours sitting quietly on my bed watching her show. (don't judge, sometimes you have to just not rock the boat)

Today has been a better day for her emotionally but she really hasn't been interested at all in eating. She had some potato chips this morning (her favorite breakfast), ate her leftover peach cup for a snack this afternoon, and then had a few more chips for dinner. She hasn't been as tired or angry today either but she also had her respite provider come and play with her so that kept her entertained. We'll finish this 5 day cycle and probably do one more 5 day cycle, but if we don't see an increase in her intake or in her gastric emptying after that, we'll probably stop using it.


  1. I laughed so hard reading your post because this has been life in my house the last few days. My daughter's developmental pediatrician recommended putting her back on Periactin to see if it helped her appetite. She never acts hungry and refuses to eat most of the time, though she doesn't struggle with motility issues (I don't have any residual food three to four hours after her feedings). I took her off of it a few months ago because she was cranky and not sleeping well. It's been more of the same this time around, but I'm trying to stick with it because her eating has improved. I'm giving her melatonin or another herbal kids sleep remedy because she's still awake after 10pm. I had my husband go in our room last night where I thought I left her asleep in our bed and he was greeted with "Hello Papa!" and we had a 45 minute chatter fest while her sleep meds took effect. We've had major moodiness during the day too, temper tantrums in an otherwise sweet little girl. I'll try giving the meds at a different time and cycle her off it. Thanks for the laughs and good tips to try!

  2. I used Periactin for approximately 6 months to relieve an allergic reaction and it worked extremely well. It did make me drowsy though, therefore I halved the dose I was recommended.


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