Wednesday, May 13, 2015

May CF Clinic Appt

On Monday Olivia had her 3 month routine follow up at the CF clinic. After Olivia's last GI study for the delayed emptying, we have yet to hear anything back from GI regarding a diagnosis or what if anything, they would like us to do going forward. A huge bit frustrating for sure on the lack of follow through and communication. Even if there isn't really anything to report, it'd be nice to hear that too, not just be left to wonder. Thus of course, I voiced my unhappiness with the lack of follow through at our appointment Monday but that about fell on deaf ears as no remarks or excuses or apologies or anything were made.

After the delayed emptying study had come back normal and the upper GI and the barium study and we were able to clean out Olivia if she was having a bout of DIOS, Jeff and I decided we needed to do something to intervene with the downward spiral Olivia's weight was taking. Olivia had been off of periactin since November because of the altering effect it had on her mood combined with the lack of usefulness it was having. But, we were at a loss, her g-tube tolerance was decreasing, the amount of food she'd consume by mouth was continuing to decrease and was next to nil and her weight was dropping. In March she was down to 41 lbs. Thus Jeff and I decided to start the periactin back up in April. Ground needed to be gained and with no known or diagnosed medical reason for her lack of eating, we decided to give the periactin a go. I'm thankful to say that it worked. Her appetite was turned on like a light switch immediately after starting it and the amount she'd actually eat increased tremendously. We were able to begin her nightly g-tube feeds at the goal rate of 75mL/hour and then would slow them down to about 60mL/hour around midnight so she wouldn't wake up as full. Thus things were definitely looking up. With the nicer weather, we've been able to spend more time outside and do more things which has helped her anxiety some.

So aside from the frustrations Jeff and I shared with lack of follow through from the GI team, her appointment on Monday went well. She's grown taller and in just a little over a month has gained over 3 pounds. Her BMI is over the 50th percentile goal. Her lungs sound good and we will continue with psychiatry for her anxiety.

Jeff and I both expressed that this weight gain is due to the periactin and not the g-tube. Living and seeing all that we've gone through for nearly a year with the g-tube and knowing the amount of weight she actually lost even with utilizing the g-tube nightly, the one thing that has been the most successful for Olivia throughout her life thus far is using the periactin to get her to gain weight, that is when it is actually effective which it most certainly was this last go around. We don't know how long it'll be this effective for, as over the course of 4 plus years, toward the tail end, the amount it would increase her appetite wasn't much at all. Perhaps having been off of it now for over 5 months has made it more effective now that we started it back up. If history repeats itself, we know it won't be this effective forever. Thus, we will keep using it while it works and if it becomes less effective and/or with the terrible mood swings, we will look into something else, i.e. marinol. Olivia's been off of the periactin now for just a few days as we use it for a 3 week on, 1 week off cycle and already her appetite has tanked, eating but a few bites/day. For the past 3 days now she's woken up at 4:00 am crying out. We were able to prevent vomiting, until this morning when she got up at 4:00 and was so worked up that she proceeded to puke every last thing up. Again, we know anxiety plays a role in this too, but we also know that the periactin opens up the stomach, so both Jeff and I question if the lack of using it now has caused her system to slow just enough that the tolerance to the feeds is even less or if this morning's episode was pure anxiety and mental. Regardless, it's exhausting but nothing new, it's so often 1 step forward 2 steps back.

Thus, we will get through the rest of this week, hopefully without too much weight loss given no periactin and no appetite and then start it back up Sunday and see how round 2 goes.

I still have a hard time wrapping my head around the fact that a child, CF or not, can literally have no appetite. With the use of the miralax, judging by her daily stools, we know she's getting darn near cleaned out each morning, thus she shouldn't be blocked up and her test results proved "normal" on her GI system that I find it so hard to believe she just isn't ever hungry. I'm not exaggerating, yesterday she literally had a few nibbles of food and that's it. It just blows my mind. When I asked our CF team about this, I was told nothing besides that there is a small percentage of the cf population that literally have no appetite. We weren't told how to go about managing this other than relying more on the g-tube which we already know isn't all that effective for Olivia, unless we utilize it more often, not just at night. For now, we will continue with the periactin cycles and nightly g-tube feeds and see if this continues to keep her weight up.

Provided all goes well, we won't return to CF clinic until August. At this appointment she'll have annual studies done (chest x-ray and blood work) along with the glucose half day procedure to check for CF related diabetes which will be a yearly test for her going forward. We'll continue to meet monthly with her counselor to help with anxiety and hope we can get it somewhat decreased by fall when she starts kindergarten . . . man oh man, we have a long ways to go.