periactin to stimulate appetite?

[sncmom]

DD2 has athetoid CP and has always struggled to gain weight. She hasn't been on the charts in ages, but she had been creeping back up over the past 8 months. Then 4-6 weeks ago, her appetite (or at least her food intake) has plummeted. We just had her 2-yr check today and she was 20.4 lbs. I had been hoping for at least 22.
Anyway, we've been discussing periactin with her dev ped and today with her primary ped as an appetite stimulant. I was just wondering if anyone had tried it and what their experience had been. TIA.

[Dom&O]

We just started it this week, so I can't really give you a ton of information. I will say that he did try a few new foods, and for him that is HUGE! It makes them sleepy, and cranky (if they get cranky due to tiredness) so you may want to give her the dose before nap/bedtime. Other then that the side effects are minimal so I would give it a shot and see if it helps her gain some weight.

[2boyzmama]

It's funny you say you were aiming for 22 pounds at 2, so were we! We didn't make it either Connor was barely over 20 pounds at his second birthday, he had been 21, but then got rota virus and lost a bunch of weight, and it took him months to gain it back.

Periactin was brought up for him too, but his intake is not the issue (he does eat!). AND, his syndrome is known to be associated with slow gastric emptying, constipation, reflux, etc and all of those are exacerbated by cramming larger quantities of food in the kiddos. It used to be pretty standard course to give all kids with his syndrome g-tubes and try to get them to grow faster that way, but the medical community is finally catching on that it's leading to a cascade of problems with the slow emptying, constipation, reflux, leading to nissens, enemas, etc etc etc.

In Connor's case, once I finally got ahold of the growth charts for his syndrome, and when we took into account his hypotonia, his weight really isn't that bad. Yes, he's small, but his height/weight ratio isn't "that" far off really, and like I said considering his low muscle mass it makes even more sense.

Interestingly...when I was talking to the Dev Ped about this (it was GI that wanted him to try Periactin) the Dev Ped kind of rolled her eyes and said "GI wants everyone to fit in a box, and even wants my spastic CP kids, who will never be on a growth chart, to gain weight and it just isn't reasonable."

So we didn't do it. Obviously difference circumstances could mean that it's worth trying, but when taking the big picture into account for Connor, Periactin wasn't the answer. Have you plotted your daughter on the CP growth charts? Our Dev Ped said something about those charts, so they must exist. Maybe 20 pounds is reasonable.

[sncmom]

2boyzmama, I take your point about growth charts. And I think the issue is more the shape of curve than where she is on it. This is her second kind of plateau where she fell off of her own curve. And she is in a decent place on the regular curves for head circ and height, and those have stayed fairly steady (height is always tricky in a 2-yr-old who cannot stand the doctor). I wish there was a magic wand...

[preemiemamarach]

We did use it at around 14 months when DS was severely FTT. it DID work- doubled his intake from approximately 20 ounces of elemental formula a day to 40 ounces. Unfortunately, the increased intake (we'd just started elecare) caused him to have a severe reaction to the corn syrup solids in the formula, and we had to discontinue it (and a huge, unrelated saga followed).

So, I'd say definitely try it. Huge difference for us in the week we used it. Also, to give you a little hope, at 15 months, we thought our son would NEVER be on the charts (he had no increase in weight or height for 9 months from 9 to 18 months, I believe), and he's now in the 80th% for both height and weight at 35 months (35 pounds and almost 39 inches). Part of his incredible appetite these days is from the anticonvulsants he takes for seizure disorder (we discovered he has a brain lesion this past january), but some of it is just that his appetite turned on at around 22 months!