Your experience with Periactin?

For those whose preemies take Periactin as an appetite stimulant, can you tell me what your experience is? How often do you give it? What times of the day? Do you notice increase in appetite, tiredness, hyperactivity?

My son started taking it about 3 weeks ago. We are only giving one dose, before lunch. Since starting it, he has slept well for naps (about 3hrs). But if we give him a dose in the evening, he is restless all night long and wakes up hungry in the middle of the night. Our instructions were to start w/ one dose and then give 2x/day. I can tell he does have more of an appetite on it. This past weekend we decided not to give it 2 days (I've heard they can build up tolerance and many people give it during the week and not on wkends). However, he didn't nap at all those 2 days (lays in his crib awake, kicking, and babbling for a couple of hrs).

Your experience?

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Oh my, i have no idea why no one has prescribed this to my daughter.

She has never expressed hunger, they decreased her feeds by 20-40% and she had no reaction.

Is that why Henry is on it?

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Hopesmom, it is definitely something that could be tried. The team of drs Henry used to have never mentioned it, but then again, they were never concerned w/ making sure he was "comfortable" either. Henry's new team of drs have done several things to make him more comfortable and increase his appetite. First of all, they switched him from Prilosec to Prevacid... this change was the biggest for him where he first started asking for food. Then we tried Erythromycin, for gastric emptying, but he didn't tolerate it. Then he had an endoscopy where we discovered his Eosinophilic Gastritis. He gets ingested Pulmicort for that. Now we are trying Periactin. I believe Henry's success in feeding and weight gain are due to a fine balance of meds, all which are aimed to make him comfortable. Periactin is an antihistamine w/ a side effect of hunger.

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Thank you so much. It sounds like Hope's and Henry's problems are very similar in symptoms and all. I hear from everyone,"Oh she'll turn around, she'll be hungry,Its because she is tube fed," i tell them she wasn't born with a tube, she has had plenty of chances and time to tell she was hungry, there is something else going on.

I am glad you have found out Henry's issues and i know it must be a load off your mind. I am constantly thinking, which is something us preemie moms do, OCD helps with the thinking as well. It seems as if i dream up ways to help solve her problem even at rest.

Thank you so much, By the way we talk al ot on here and i never knew your name, I am Stacie, thank you for all the wonderful posts.

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Henrysmom-My dd just turned 4 and has been on Periactin for over 3 years. We have done both the 5 days on 2 days off and continuous dosing and I noticed no difference in effectiveness when we took her off for 2 days at a time. We definitely see an increase in appetite although it was much more dramatic in the beginning. When she first started she was taling 2 ml 3x daily. She currently weighs 28 lbs and takes 5 ml 2x daily. She used to get drowsy but that was only the first couple of months she was taking it. (I didn't mind because I figured if she's sleeping, she's burning less calories.)
Our GI says there are no long term negative effects so we are going to keep giving it to her until she "catches up" or the GI directs us otherwise.
Hopesmom08- My dd also never showed any signs of hunger and it is still a very rare occasion when she does. I believe it is a combination of physical problems (constipation, reflux, very large tonsils) and behavioral issues. The physical stuff along with our anxiety and frustration contributed to the behavioral aspects of the problem. We have been to feeding clinics, nutritionists, behavioral specialists, GI, etc and really had no success until we saw an ENT who noticed her tonsils were enlarged. We decided to have them removed as a last resort before getting a G-tube and it improved her feeding issues a lot. Not perfect, but much better. There is another mom on this board that had very similar issues and decided to try the tonsilectomy and last I heard, was having pretty good success with feeding since her dd has recovered. This may not be the issue for your dd but I wanted to put it out there anyway.

Best of luck to you and yours.
Laura

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Hopesmom08- I also wanted to say that I know how you feel about people saying, "oh, she'll eat if she gets hungry enough" or "here, let me try, I can get her to eat" or "as long as she's staying on her own curve". What they didn't understand is that she was on her own cureve but only because we were battling her to take very ounce, every bite! We didn't keep her on her curve by just feeding her when she was hungry, she was NEVER hungry! It is so frustrating when people minimze the problem but they don't live with it evey day so it's easy for them to be non-chalant about it. I just wanted you to know that you are not alone. I totally understand where you're coming from.
Laura

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Hi Stacie,

I'm Amanda. Yes, it is such a relief to have figured out what is going on w/ Henry! We still have some issues. He has a very sensitive gag, so when he stuffs too much food in his mouth or gags on an odd texture, he can vomit and completely empty his stomach. Although the Prevacid has made a HUGE difference in his eating, we still think there's some reflux issues. He occasionally vomits an entire meal for no apparent reason, which we think may be due to reflux. He still vomits about once daily. And of course, we see it as lost calories. He also still has issues w/ spoon feeding and purees, although its getting better. Also, he still doesn't drink from a sippy.

You sound like me... I have spent hrs and hrs researching possible causes for Henry's lack of weight gain (they could probably fire me at work for the amount of time I've spent online!!!). I haven't spent as much time recently since he has been doing so well. I think I do believe that our kids eventually "grow out" of these issues, but I think its the drs' responsibility to find out what those issues are so we aren't dealing w/ all this frustration and resorting to tube feedings until they do. I think they either don't care, are ignorant, or don't have the time to really sit down and figure out what is going on. That is why it is so important for us to be our children's advocates. WE are the reasons so many of our preemies finally find comfort and healing. We may not have found the diagnosis, but we push for its discovery. Sorry to ramble!

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Thanks Laura! We are giving Henry 2.5ml once/day. We started out giving it at night, but he had a few very restless nights, so we decided to do it before naptime. That worked out well and he was sleeping well for naps. Today we decided to give it after he woke up and he ate awesome today! Over 1000 calories! He even sucked down 4 1/2 oz in 10 minutes after his nap! He drank it so fast we were afraid to let him run around b/c we thought he might chuck it up!

We were told to increase the doses to twice a day, but as I mentioned, he doesn't sleep well at night if we do. I'm really confused as to why he sleeps well at naptime but seems to have the opposite reaction at bedtime. Hmmm. Thanks for letting me know that you haven't experienced any bad side effects. Have you ever taken her off it to see if she would eat the same amount w/out it?

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Wow! 1000 calories is amazing!
Jacklyn has been off for a few weeks, even a few months at a time and we can tell a difference, just not as much as we did in the beginning.
She has always slept really well after we gave it to her. I've never heard of it causing excitability but I believe it could happen. If we give her other meds that usually cause drowsiness, like Benadryl, she is restless at night.
If once a day dosing is working, I say stick with that until you notice it being less effective, then maybe you can try a really early dose in the morning and one right after naptime?

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Been there done that! My daughter is 6 and is still on prevacid for reflux, although she is down to only 15 mg a day and we are thinking of taking her off to see if she really needs it anymore (will be the first time in her life she is not on some sort of reflux med - yeah!). By the way, prevacid by far has worked better than any other reflux med we have ever been on.

Still to this day I'm not sure Katelyn really feels hunger. I would say she didn't eat what I would consider "well" until within the last year or so. Eating has always been a struggle and sometimes still is. Starting around the age of 2 1/2 we tried Erythromycin for gastric emptying which seemed to have an effect for a while and she tolerated it well. We used periactin for probably close to 2 two years and if memory serves we gave her 2 doses a day (maybe 2.5 mg each) and we cycled it. We tried 5 days on 2 days off and the 2 days off didn't seem to really help. So, we switched to 2 weeks on, 1 week off and that seemed to work the best for us. I think cycling does help. We did notice increases in her appetite and we felt like it worked the majority of the time.

Hopesmom08 and laurakennedy77 - I can so relate to all the all the comments about how "they will eat when they are hungry" and so forth. People just don't get it. My relatives all learned very fast with Katelyn - every one of them came in with the "I can get her to eat - here let me feed her" approach and every one of them left defeated and having a better appreciation for our challenge. My SIL just learned how "difficult" it is to feed Katelyn (she has 5 year old full term twins) a couple of months ago when Katelyn stayed over with them for the weekend (they recently moved close by). She used to say "don't worry about it - she will eat when she is hungry" and she doesn't say that anymore. And I think Katelyn eats pretty well now. Still a struggle sometimes, but a different struggle from back in the days of projectile vomiting. Now it's more a battle of wills.

As for the weight gain, I monitor weight for length or BMI and as long as she stays at 50th percentile I'm ok. She is 6 and only weighs 36 pounds. She is barely on the charts for weight and height. There were years where she would stay the same weight for the entire year. Even over the past year she has only gained around 4 pounds. I used to worry so much about the weight and we used every calorie enhancer out there. But she is healthy and happy and that is what matters.

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Thanks Laura,

I think we'll try giving it to him first thing in the morning and see how that goes. I think I agree... maybe we'll just keep it at one dose until we think he may benefit from another dose. We were thinking the same thing... give a second dose after his nap. We were concerned that the Periactin may cause hyperactivity. Antihistamines caused my 6yr old to become wired when he was young. Fortunately, they no longer have that effect on him.

1000 calories is amazing! We are so thrilled when he hits that amount! And he didn't vomit yesterday either, although he came close at dinner! We gave him the Periactin again when he got up this morning. A little bit ago he shoved in 1/2 piece sausage, 1/4 biscuit, and 1/4 donut in less than 20 min! I am so happy w/ the way he's been eating! He's come along way from force feeding bottles and taking 1hr to drink 4oz!

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Thanks aplus67,

I guess at this pt we'll just give it continuous unless we think its not as effective. I guess we'll cross that bridge when we get there.

I'm not sure what your family genes are like in respect to size, but I can understand how you feel w/ Katelyn and her size. I have a 6yr old son who was actually born FT weighing 7lb 6oz. He turned 6yrs in Oct and only weighs 38lbs. There's one kid in his class that is smaller than him and he was a micropreemie! My DH and I joke sometimes when we think Henry has eaten more calories at a sitting than our 6yr old! Both our families are on the small size, but we are planning to take our oldest to an endocrinologist just to check some things. Henry has been checked out (endocrine and genetics) and everything is fine. We have also experienced the family thinking they can feed our kids. In time, they all seem to eventually realize our struggles!

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Henrysmom - they do come in all shapes and sizes whether they were premature or full term. The majority of my family is average size (although my brother is 6 feet tall, but I am 5 foot 5) and my husbands family is on the tall side - he is 6 foot 2. We recently started seeing an endocrinologist because Katelyn has premature pubarche and we wanted to make sure that everything is ok hormonally and that she is not going into puberty early. All her blood work was normal, so we are thinking it is just premature pubarche. However, she also has advanced bone age which may indicate that she will stop growing sooner than normal. But, who really knows. It doesn't matter to me where she ends up in terms of height and size as long as she is healthy and happy! That is what is most important.

Good luck with the periactin - it sounds like it is making a difference for Henry.

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I am definitely bringing this up at Hope's GI appt. on Monday.

I don't want to be pushed around ny the specialists.
I always tell them to what if she is like 5 and won't eat, oh she'll grow out of it.

I know she needs meds and i am going to get her the help she needs. I just feel so bad when she can't communicate to tell me what is wrong, iam so thankful for goof motherly intuitions that i rely on to help her.

Thank you for your suggestions and i am surely going to bring this up.

Oh also did your docs. alwyas want to add add add calories, and then your kids won't eat because their food is to enriched.

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Hopesmom08 - Yes, the drs always just pushed us to add calories and get volume in. It's really frustrating and so obvious that they have no clue what its really like. You can't force a child to eat. We had a nutritionist once tell us to aim for 24oz a day. Really? Come on... doesn't she think if I could get that in him, I would! I've never been big on giving kids lots of meds, but I can definitely see that the right meds and the right doses have made a HUGE difference w/ Henry. Before Henry was 1yr he wouldn't tolerate calories added up to 30cal/oz. We'd just keep the calorie content to the amount that we knew he was comfortable taking. Fortunately, his drs now trust us and believe us when we say he will or will not tolerate something. Then they work w/ us to get to a good balance. We are very involved w/ the dosing on his meds. If we think its too much or not enough we just explain to them why and then we adjust as needed. I actually feel like we are a part of the team. Good luck and I hope you are able to find that w/ Hope's drs.

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Thank you so much.

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