KayTar has had abdominal pain every night since Thursday! We haven't gotten a normal volume of formula in her in several days. Yesterday we were only able to give her two feeds and then we tried a third (slow) feed after she was asleep and the pain had subsided, but when I went to check on her, she had unplugged it because it was making her uncomfortable and we had been feeding the carpet for who knows how long (long enough for there to be a visible puddle of formula if I pressed on the carpet!). Five nights of pain is MORE than enough, so I did some research and we are going to change some things in hopes of making this better for her.
I found this article last night, which has a LOT of good information in it about gastroparesis. It is a tough subject to get quality information on and many physicians are not familiar with it. There is also this article by the same people which is newer and has more specific information on the nutritional needs/deficiencies and how to treat them, but since KayTar's nutritional status is still good, the first article covered the specific information I was looking for more succinctly. The main tips they outline in the articles are:
1. Smaller, more frequent meals, which facilitates improved gastric emptying.
2. Use more liquid calories (solids in the morning, transitioning to liquids later in the day).
3. Glucose control (if hyperglycemia is a contributing factor, it isn't for KayTar).
4. Avoid medications that slow gastric emptying (the only one KayTar takes is Benadryl).
5. Limit fats (but only if you have tried the previous 4 steps without success)
6. Limit/avoid fiber which can form bezoars or ferment in the slow moving gut, making things worse.
7. Treat bacterial overgrowth, if suspect.
8. Monitor and replace iron, B12, vitamin D, and calcium.
We decided to start by reducing her feeds from 8 ounces to 6 ounces today. And we let her have solids during the school day, but have transitioned to liquids/purees since she has been home (and powdered parmesan cheese...not sure what that counts as!). We will give her system a couple of days to adjust to this, but if this doesn't help sufficiently, then we will further reduce the feeds to 4 ounces as at time. It is kind of a pain to maintain that sort of schedule, but figurative pain for us is better than literal pain for her, so we will do whatever she needs us to do to help her feel better. If none of that helps, we will cut out solids for a couple of days to see if that helps, and then slowly add things back in as she tolerates it. I would hate to have to go that far, because she does get enjoyment from eating the few foods she will eat and it goes against everything in me to tell her that she can't eat. Additionally, I just spoke with the GI nurse and she said that the doctor wants us to increase KayTar's Augmentin dose from 5ml of the 200mg strength (QID) to 6ml (still QID) for 2 days and if it doesn't cause diarrhea or any other negative symptoms, she wants us to increase it to 7ml after that period. (On a side note, the turnaround time at the satellite clinic is AWESOME, less than 12 hours!) She is also being referred to a motility specialist.
I'm hoping that one or two of these small changes will be enough to relieve her pain. I just hate that she is hurting every night and I can't fix it for her. I'm so thankful that otherwise she is doing well; she is able to go to school, she is healthy, and the pain is mostly limited to the evenings before bed...it could be worse in a multitude of ways. Hopefully we will get this under control for her soon!