Raising the Bar

Oh I love writing good updates on feeding! Last week we restarted Sofie's Prilosec. We just went back to exactly the same Prilosec/Zantac combo she'd been getting before we made the changes the week of Christmas. We expected to wait a week to see if it would have any effect.

We were surprised and happy to notice a change the very next day. After bouncing between 5 and 13 ounces per day on oral intake, this is what this past week looked like:

Thursday (restarted Prilosec at bedtime) - 7 oz.
Friday - 15 1/2 oz.
Saturday - 19 1/2 oz.
Sunday - 21 oz.
Monday - 17 oz.
Tuesday - 21 oz.
Wednesday - 18 oz.
Thursday - 20 oz.

So the Prilosec got her back on track for the volume she had been taking prior to the changes we made with her reflux meds. Apparently she does have reflux and it does bother her quite a bit, even though she doesn't show any signs of it other than not wanting to eat.

The little stinker also pulled out her NG tube on Monday, and since she's been thisclose to her target hydration volume of 23 oz/day, we just left out the NG this week to see how she'd do. She's done well, but seems to be at a plateau right around 20 oz for the day, and although that's MUCH better than last week, it's still not enough to keep her from continuing to lose weight.

Her weight bottomed out at 15 lbs even and was hovering there all last week. After eating better this week she was slowly working back to 15-1, 15-2, but still barely hanging on. I talked to Dr. Y. on Thursday and told him Dana (Sofie's dietitian) and I had talked about starting Sofie on the Periactin (appetite stimulant) and thought that maybe now was the time to start it. He agreed that she just needs that last little boost.

Dr. Y. said we could expect to see her appetite start to increase about 4 days after we start the Periactin and that usually it causes around a 50% increase. Since she's taking about 20 oz per day by mouth, it's possible that she may increase that volume to 30 oz. per day. I told him I'd be giddy if it worked that well!

He said he usually keeps kids on it for 2-3 months straight and that's generally enough time to "retrain" the brain that the increased volume is what they need to eat to get full. He said then we'd try to stop the Periactin for a couple of weeks and see how she does without it. If her appetite were to decrease, he'd probably restart it for another 2-3 months. He said he's never had a patient on it for longer than 6 months.

The Periactin is an antihistamine that has the side effect of increased appetite. Using it as an appetite stimulant is an "off label" use, but many medications are used for "off label" purposes. Other common side effects are the same as any other antihistamine (like Benadryl) - dry mucous membranes (mouth, lips, eyes, etc.) and drowsiness are the most common.

We started the Periactin last night (Thursday night). Today she took two monster naps, and I thought she seemed a little sleepier than usual, but surely it wouldn't work that fast? She was also eating more today, even by 10:00 am this morning I noticed a difference. I weighed her this afternoon and she had gained 6 oz. since yesterday. I reweighed her several times and was looking under the scale like there might be little lead weights hanging from it. Could this be working already?!?

Day 1 of Periactin, Sofie ended up taking 25 oz.!!! This is a new record for her. Right now she's still tube free, and I hope it continues!