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Neuro and GI follow-ups, part 2

After we got done with Raya's neuro appointment, we had an hour to kill before it was time to see her GI. We stopped at the nurse's station to get her sticker & Dum Dum (peach-mango, the only flavor she's interested in right now) and then went across the street to get lunch. I was starving. She was getting tired by then and had to touch everything in the sandwich place. Then she got upset because I said we were going to get in the car and go back across the street to the clinic and eat in the car instead of staying there to eat. They had said they'd call if the doctor got back from lunch early so I didn't want to be across the street if they called us. Then she got upset because the guy only gave me one water cup and their lids didn't fit it so I didn't let Raya carry it. Then she got upset because I grabbed her when she tried to run away in the parking lot. Then she got upset because I put her in her car seat instead of letting her climb in (sllooowwwwwwllyyyyyy) by herself. Then she got upset because I helped her buckle. (you get my point)

I knew it was not going to be a pleasant visit with her in that sort of mood. She perked up again in the waiting room when I let her play a game on my phone but then she only got to play for 2 minutes before the MA came to take us back. I didn't let her carry my phone so she got mad. Thankfully we had already done her weight & height because she wasn't feeling very cooperative by that time. I gave her my phone back when we got into the room and she showed me a happy face. Then the doctor came in a couple minutes later and I had to take the phone away from Raya again because she started dialing. For the next 10 minutes or so, she made it difficult for the doctor and I to carry on a conversation.

There was a lot to talk about at this appointment. Dysmotility was at the top of the list. Well, actually, the first thing we talked about was Raya's weight. The MA had mistakenly written down 14.06kg instead of 14.6, which made it look like she had lost a pound since July. Thankfully, I had also looked at the scale and written the weight down. We quickly re-weighed her with clothes on to see whether she was closer to 14.06 or 14.6 and with clothes, she was 14.7. Glad I caught that or we would have spent most of the appointment freaking out about her losing so much weight in 2 months. 14.6kg was still nothing to be excited about. She has weighed exactly the same at her last 3 visits, which means she hasn't gained an ounce since May. In all honesty, it's pretty much my fault for not being more vigilant about counting her calories so we'll be paying closer attention.

Other items on the list included:
-low energy levels recently
-"allergy shiners", aka the dark circles under her eyes that are typical of kiddos with allergies
-still complaining often of throat pain (from reflux)
-skin rashes that correlate with ingestion of food she's allergic/intolerant to have been showing up when she's not eating any of the problematic foods
-has been waking up at night more often
-has had more big meltdowns in the last week than she has in a long time, which we think is food/pain related
-and of course the delayed gastric emptying

For her reflux, we had weaned her off of Prilosec (a proton pump inhibitor, or PPI) to see how she would do off of it and put her on Zantac (an H2 blocker) instead. Both meds reduce stomach acid but by different mechanisms. H2 blockers would be like turning off the light switch, and PPIs would be more like removing the light bulb or disconnecting the electrical wiring. Or something like that. :) She's not necessarily horribly worse than she was with the PPI, but she's not better either. We decided it's time to put her back on a PPI even though it makes me sad to have to do that. We're going to try Nexium for a while (in combo with the Zantac she's already on) instead of Prilosec and see how she does with it.

**I have to interject something here. I've had people ask me if the fact that we're suppressing Raya's stomach acid production could be the reason for her delayed gastric emptying since it could be inhibiting the breakdown of food in her stomach. (I've questioned it before myself, actually, and discussed it with her doctor multiple times.) My answer to that is no. We've had her on varying levels of acid suppression in the past few months (and throughout her whole life), and even at the most minimal dose of the weaker medication (on which she has miserable reflux symptoms) her stomach still does not empty properly. It is not a matter of the level of mechanical & chemical digestion going on in her stomach, it is a motility problem, which can be either a neurological problem or a muscular problem, or a combination of neurological and muscular. As much as I wish she did not need acid suppression therapy, not giving her medication for it does 2 things. First, it makes her feel crappy and have poorer quality sleep from waking up choking on refluxed stomach contents. Second, it puts her esophagus at risk of long-term damage since esophageal tissue is not meant to be exposed to highly acidic stomach acid. Left untreated, acid reflux can cause things like esophageal strictures, ulcers, and histological changes that can eventually lead to cancer.**

We talked again about her current dosage of gabapentin, which is used to help control her visceral (gut) pain. She's been on the same exact dose for well over a year and has grown a decent amount in that time. (except for between May and now...) As I mentioned yesterday, the neurologist said that the half life of gabapentin is fairly short so it is common to give it 3 times a day instead of twice a day. (that reminds me, it's time for her mid-day dose...) We're going to increase her to 3x daily and see if it helps with the pain she's having.

The biggest issue we had to discuss was Raya's motility. To sum it up, there's not much left to try except for botox (which both of her insurances denied emphatically) and surgical intervention. We've been discussing for months now that it might be time to consider a fundoplication surgery for her persistent reflux as well as a pyloroplasty to deal with the delayed gastric emptying. The consensus is that a fundo would be too risky for Raya because of her history of retching & vomiting, so we definitely don't want to go there unless she has a drastic increase in reflux symptoms or complications from it.

As far as the delayed gastric emptying though, without being able to get insurance to approve trying botox, that option is probably off of the table. Her GI is going to talk to one of the motility specialists at Boston about it because she thinks there's a possibility that if it was done at a motility center, insurance may cover it. My personal feeling is that since botox is temporary, I don't see a point in flying across the country to do something that's going to wear off in a few weeks but I am interested to see what she has to say about Raya's case. Having already done motility studies, I don't see much of a point in going out of state for testing again unless they have an actual treatment option to offer.

We are now discussing more seriously the option of doing a pyloroplasty to help Raya's stomach empty more normally (but hopefully not too fast). For reasons I'm not going into, it would be better to do it sooner than later so we're going back for another visit in 6 weeks instead of 2-3 months. In the mean time, she's going to be talking with the motility doc in Boston and get back to me in the next week or two about what to do next.

Recently, I've caught myself saying things like, "Not that I want to rush into surgery..." and then thought, wait a second, we're not RUSHING into ANYTHING!! We've been patiently dealing with this for her entire life! We've tried darn near everything there is to try, including medications, natural remedies, diet changes, feed schedule changes, feeding her intestine instead of her stomach, and "movement therapy," and yet here we are.  Yesterday morning, I was about to give her the morning doses of her medications and she stopped me. She said her stomach was full of formula (her words, not mine) so I vented her. There was 7 1/2 hour old formula in her stomach, which is concerning enough in and of itself, but there were also tiny bits of peaches that she had eaten for breakfast the day before. That means the peaches had been in her stomach for no less than 19 hours. Suddenly, I understood why she (and subsequently I) had gotten such a crappy night's sleep. That is not normal and it's not okay! How can we ever expect her to eat 100% orally when that's how her stomach is functioning?

Anyway, overall it was a productive visit and I feel like we will be making decisions soon about moving forward with the pyloroplasty or not. Incidentally, we are in agreement that a pyloroplasty could significantly improve Raya's reflux by increasing her rate of gastric emptying. That would be awesome.

After her GI appointment, we stopped by the nurses' station again to get another Dum-Dum and sticker and then stopped on the way out to schedule her next appointment. The recurring theme the whole time we were at the clinic was, "Oh my goodness, she's getting so big! I remember when she first started coming here and she was just a tiny baby!" At least 4 people said it. It's crazy to think about how long we've been going there and how much time we've spent there in the last 3 years and 8 months.

She was super crabby by the time we got home and had another big meltdown. I just let her roll around on the floor and throw her fit and while she did that, I turned on one of her favorite Leap Frog videos. After a few minutes, she stopped moving and just laid there and watched it. Hopefully we won't have to do school + 2 specialist appointments in one day again anytime soon!

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