Reflux Wean

by Kayte

Over the last month we were successfully able to wean Lola from her reflux meds. Per the doctor’s orders we gave her a half-dose for three weeks, then stopped and monitored for another two weeks. She hasn’t experienced any ill side effects, so today the doctor declared that we are in the clear. It’s a small victory, but having just one less thing in our daily routine is really liberating. It was especially nice to not have to worry about packing and administering it on our most recent trip out of town (especially since we were dealing with liquid growth hormone which had to be carried on the plane, declared to TSA, and kept refrigerated at all time).


GI Checkup

by Kayte

It’s been nearly six months since we visited Lola’s GI so we were due for a checkup. He was very happy with the growth she’s made since starting the growth hormone. Since Lola is growing well and not throwing up as much (or, at all) we decided it’s time to try weaning her from the reflux meds. We’re going to halve her current dose for 3 weeks, then stop completely and monitor for another 1-2 weeks. If she doesn’t seem fussy and doesn’t start throwing up we’ll be in the clear! Then after we successfully wean the reflux meds, he wants us to try to wean the Miralax she uses daily for constipation. It would be great to finish with all of these meds AND be done with another specialist. Fingers crossed that she’s grown out of these two issues.


Weight Check

by Kayte

We took Lola in for a weight check today so we could give an update to the GI. She gained almost a half-pound since our last weight check a little over a month ago. She’s now just shy of nineteen pounds at 18lb 15oz, which is a decent gain for that time period. The GI said to continue with the reflux meds and check back with him in two months.

Max must be growing in spurts. He only gained an ounce in the same amount of time at 25lb 13oz.


Omeprazole

by Kayte

We put Lola on reflux meds a little over a month ago to see if it would help with her self-gagging issues. When we didn’t see any change we figured the meds weren’t making a difference, and Lola was scheduled for a GI endoscopy.

But then her big weight gain month overlapped with the medication, and we wondered.

And then when we finally ran out of the reflux meds and stopped using them, she started throwing up at least one meal daily. Hmm.

So today we called the GI back to discuss. He said sometimes when a person goes off reflux meds the stomach produces a large amount of acid to compensate, which could cause the throwing up. But, Lola used to throw up meals at least a few times a week pre-meds, and we didn’t notice her doing that at all this last month. We were so focused on the meds as they related to her gagging, we might have missed the fact that she was throwing up less (and gaining weight!).

The GI told us to continue with the reflux meds and check back with him in a week. If Lola stops throwing up, he will postpone the endoscopy for a few months and consider the meds as a long-term treatment. It would be both frustrating and amazing if something as simple as these reflux meds was the solution to Lola’s eating/growth issues!


Reflux Meds

by Kayte

We had a follow-up phone call with the GI today to report on the results of Lola’s reflux meds. We told him we hadn’t noticed much of a difference. She still gags herself at almost every meal. We’ve been preventing her from actually making herself throw up, but the behavior is still there.

He said the next step is to do an GI tract endoscopy/biopsy. It’s a short procedure under general anesthesia. The doctor will send a scope down Lola’s throat and into her stomach to look for blockages, inflammation, irregularities, etc. He will also take a few tissue samples for testing. The results will tell us if everything looks normal in there, and can also give us a definitive answer on reflux or possible food allergies.

The endoscopy is currently scheduled for late May, so in the meantime we’ll just keep doing our thing.


Gagging

by Kayte

Today we went to the GI to discuss Lola’s gagging issues. At almost every meal she sticks her finger down her throat and gags herself, sometimes to the point of throwing up. She started this months ago (maybe last fall?) and, thinking it was behavioral, we tried our best to ignore and discourage it. The behavior had gotten worse over the last month. Sometimes it really seems as if there is something in Lola’s throat bothering her, and sometimes if she does throw up she seems to feel better.

Reflux (especially baby/child reflux) is a super complex, sometimes invisible, condition that can cause all myriad of problems such as fussiness, low weight gain, vomiting, eating issues, ear-nose-throat complications, etc. Preemies especially are at risk for reflux (2/3 of our NICU friends have it), but Lola never had any of the obvious symptoms so we never put her on reflux medication. But with this gagging behavior getting worse, the GI suggest we try reflux meds for a few weeks to see if that made a difference.

The medication is the same as OTC Prevacid, but obviously Lola can’t swallow a pill yet, and she only needs half an adult dose. We got a prescription for these capsules that have little acid-blocking beads inside. The capsule pulls apart and we divide the beads into two doses, sprinkle them on a spoonful of yogurt, and Lola eats it easily. So far so good. We’ll see if it makes a difference.


Back to the GI

by Kayte

Monday we had another follow-up appointment with the GI. I think we left with more questions than when we arrived, but that’s sort of a good thing because he didn’t immediately diagnose her with a “problem.” Since she is still following her own curve he still isn’t immediately worried. But since she’s also not exhibiting any “catch-up” growth there could be an underlying issue. He said we’re sort of at a crossroads where we have to figure out if her size is constitutional (the way that she is meant to be) or pathological (a problem that can be treated).

He thought a visit with an endocrinologist would be a good idea. He also ordered some bloodwork that may or may not tell us something conclusive. In the meantime we’re just supposed to keep doing what we’re doing.


Gastro

by Kayte

Lola had her follow up appointment with the GI today. He weighed her in at 15lb 1oz – a 12oz gain since our last visit. The doctor was happy with her weight gain – especially considering the month she just had. Lola is following her own curve and appears perfectly healthy, if somewhat petite. He again stressed the importance of not stressing about food and just letting her eat what she wants. For now we’ll just continue to track her weight at our normal pediatrician check ups.

We may be entering a new phase of eating. Around a year old (developmentally) kids are supposed to transition from liquid nutrition (milk/formula) to regular food. I had been worried that Lola hasn’t been eating her bottles post-op, but the GI said she might just be making that transition. Their due date was Sunday so developmentally they should be around a year old now. We just have to make sure she’s getting enough calcium and iron from the foods she’s eating, and the prospect of being bottle-free is kind of exciting! They’re becoming more and more like little people all the time.


GI

by Kayte

Today was a very feeding-focused day for Lola.

At lunch time we had occupational therapy with a feeding specialist. The therapist was able to get Lola to eat a decent amount (3oz) with lots of stimulation, play, and mess. The best part is that the OT didn’t see any physical issues in terms of oral motor skills or swallowing. Lola is still a little immature developmentally, but there’s nothing standing in her way. The big things we need to work on are her focus and giving her lots & lots of oral stimulation which will activate her senses. Her favorite stim during lunch were these jiggler toys – they’re sort of like a high-powered electric toothbrush with a vibrating toy at the end. Lola loved it.

After OT we went straight to the pediatric gastroenterologist (GI). He spent a long time (1-1/2hrs) talking with us about her history and what’s been going on with her eating. (Of course as I’m telling him how poorly she’s been eating she pounds a 4oz bottle in front of him which she never does at home…) The GI doesn’t appear to be overly concerned with her weight just yet. He wants to run a few preliminary tests (blood work, stomach X-ray/ultrasound) to see if there’s anything obvious going on. He also prescribed some reflux meds in case that’s an underlying cause. He said in the meantime the most important thing is not to stress – if there’s something medical going on, stressing/pushing during meals isn’t going to make a difference; and if it’s a behavioral issue stressing/pushing will just make it worse! He told me to stop tracking feeds/calories (awesome! It drives me nuts…) and also said that I could keep breast feeding (double awesome! I had shied away from BF, fearing she wasn’t getting enough and not being able to track it). I like this level-headed, common sense approach.

So now we just wait for test results and monitor her eating/weight. I’m not sure if it had something to do with the therapy session, but between lunch with the OT, the bottle at the GI and a really good dinner when we got home, Lola had one of her best feeding days in a couple weeks! Maybe today was the corner she needed to turn…