GI

We Have Weight Gain!

Posted on by bostonkisses

Yep, that’s right! Little Miss Sassypants is maintaining her weight, and even gained a little more since her pulmonary appointment in April! Woot woot!!!

Dr. M. was really pleased with the progress she’s making, and we’re now officially out of the “danger zone” for her BMI. Her percentile dropped very slightly, but she also added almost an inch to her height, so that’s going to mess with her BMI and all.

John and I were prepared to push for the g-tube, but we’re in agreement that it’s ok to hold off for now, and just keep working to make sure Judith keeps her weight up with a high calorie diet. We read her the riot act last night, and told her that she’s going to have to cooperate and make sure she eats, otherwise she’ll lose weight again, and then we’ll have to go forward with g-tube placement surgery.

Spawn of Satan

Posted on by bostonkisses

So since Judith’s weight hasn’t made a huge improvement, her GI decided to try an appetite stimulant to see if that would help her gain more. Granted Judith did gain almost 2 lbs. when we had her at the pediatrician, and that put her back up to the 2nd percentile for BMI, but she’s still within the really “dangerous” zone for a CF kid since she barely has any body fat and no reserves to fall back on if she would get sick. Ideally, she should be at the 50th percentile or higher so she has some wiggle room when she does get sick, so we need to do what we can to get her weight up, especially since there are direct correlations to better lung health when CF patients have higher BMIs.

Judith’s GI wanted to try the medicinal route before we move to discussing more “invasive” methods (like g-tube placement). We filled the prescription for periactin, gave it a try, and ended up having to pull her off of it for a week because her behavior was declining. The last time she behaved like this was when she was on prednisone during exacerbations last year. Stopping the periactin for a week gave her system time to reset itself back to it’s baseline, and her behavior improved.

Fast forward to a week later, when it was re-introduction day. I gave her an evening dose per her GI’s instructions, and about a half hour later it was pure hell in my house. Naturally all of this happened on a night when John had meetings at church, and I was flying solo through the massive meltdowns. She had 3 big meltdowns in the span of an hour and a half, 1 of which lasted for 20-25 minutes and consisted of full out kicking, shrieking at the top of her lungs, and throwing things at me. The other 2 weren’t quite as long or as violent, but were still pretty intense. Judith decided to go to bed a few minutes before 7p (a little over an hour before her normal bedtime), and was zonked for a solid 12.5 hour stretch. If I was able to handle alcohol, I would’ve had a nice, stiff drink after dealing with the demonic behaviors that were triggered from the periactin. Seriously, I was thisclose to calling our pastor or even a priest to see if they performed exorcisms, because these reactions are so not typical of Judith!

I had to send an immediate message to her GI doctor, letting them know that we can’t have Judith on this medicine, especially with her going back to school next week, and if she would be on it long-term, sending her to kindergarten with these massive mood swings and outbursts of anger. After talking to some other CF moms whose kids took periactin, this isn’t a super common occurrence, but it has happened for others; the mood swings, anger, and other changes were too intense and too much, so they pulled their kids off the med as well. I did notice that when a drug has the potential for a negative behavioral effect, Judith will react, and it can be extra intense because of her autism.

Thank God it was only 1 dose, and it was able to work through her system so we didn’t have a lot of lingering effects the rest of the week! Her GI doc will be getting back to us sometime within the next week to discuss other options, but after discussing this at length with John, we’re both ready to wave the white flag and push for g-tube placement. Neither one of us really wants to put Judith through this, but we feel like we’re out of options and don’t have much of a choice anymore. There are a lot of positives we can get from her having the tube, and we’re ready to do whatever it takes to get her weight up into a healthy range, ideally to a point where it will help her with her overall lung health.

GI

Posted on by bostonkisses

Tuesday was Judith’s latest follow-up with her GI doctor at CHOP. The appointment itself went well, and we’re certainly still pleased with her new team. I, however, am frustrated, because Judith lost weight again. Her height increased, which means even more havoc on her BMI, which is now officially off the charts. Ugh.

We’re making some changes, and are still waiting for some of her test results to come back so we can see if there is anything else underlying that’s contributing to the issues. But the results that have come back so far are normal, so that’s a plus.

We’re going to start her on Pediasure 1.5 so we can try to get more calories into her system. Up until now, we’ve used the regular Pediasure, so she’s going to have to adjust to only getting vanilla flavor (right now, she only drinks the chocolate). I need to take her to her PCP in about a month for a weight check, and if she’s still not gaining weight adequately, we’re going to try an appetite stimulant. And if that doesn’t help, then we’ll be looking at g-tube placement.

I’m baffled, and I’m being harder on myself than I probably should be about this. Poor weight gain is nothing new for this child; it’s been this way since day 1, literally, and you’d think we’d be used to it by now. I think it’s the not knowing what’s causing this that’s triggering a lot of anxiety over the situation. Judith’s GI did say that Judith will likely need even more calories than what they typically aim for for a person with CF because she’s so active. It makes sense that Judith is burning through even more calories, because it’s rare that this kid sits still for any length of time! We’re still trying to work out the exact number to aim for, but it’s likely going to be really, really high. How I’m going to manage to cram that many calories into a kid who doesn’t like to eat much of anything is a mystery.