Gastroparesis, ketosis, and an abscess...oh my!

It has been a rough few days! We are currently fighting against a return trip (we were already in the ER on Saturday) to the hospital because KayTar still isn't doing well.

It all started Thursday afternoon when KayTar made me stop her feed and she promptly vomited it ALL up while I was rushing to get her venting equipment. We did clears that evening and slow formula on Friday morning. We managed to get her to school for part of the day and part of her party before going to get her already scheduled flu shot (maybe we should have skipped this!). Friday she got about 16 ounces of Elecare plus 8 ounces of Powerade over night for a total of 24 ounces, rather than her normal 32 ounces in a day. Normally a deficit like that isn't a big deal, but when we checked her urine on Saturday, she was already spilling a large amount of ketones. Not good! It has been years since she has decompensated like that and I was quite worried we would end up in the hospital on Christmas if we didn't get her buffed up, so I called the on call neuro and he agreed we should bring her in to get fluids.

This was our first time in the ER with our protocol letter and we were taken back quickly! The rest of it was sloooow once we were back and hooked up, though. KayTar was not thrilled with any of it, except for the Angry Birds toy she got for a reward for the IV and the teddy bear we got at registration. I was a teeny bit frustrated that they forgot to order half of her urgent labs until hours after she had been on D10 and fluids, so they were all normal by then...who knows how they were when we got there! We were discharged around midnight and headed home. It was a long afternoon/night. (And I was forced to watch Santa Paws. Good Lord.)

Sunday morning, I noticed that KayTar was wincing when I gave her meds and plugged in her feed, which is totally weird. I consulted the collective wisdom of my tubie parent friends and Heather suggested that it may be an abscess and to feel around for a lump or ridge. Bingo! There it was...right where it hurt worst. I took a photo at the pediatrician's request and she decided to treat her with oral and topical antibiotics. We started them midday yesterday. I don't know if the brewing abscess caused the earlier vomiting, feed intolerance, and decompensation, but we are hoping that treating it will help. Unfortunately, last night she was spilling ketones again!! And when I tried to vent her, I pulled out a lot of old formula. It is like nothing is moving through. We can run feeds for a time and it is fine until it hits maximum capacity and then we can't get anything more in. Ugh! We hooked her up to her pump last night to try and get 16 ounces of Powerade in over 12 hours, but she unplugged herself in the night (and now there is red Powerade everywhere!!) and I don't know how much she really got. Grrr.

This morning her glucose was low-ish (62) and she was spilling ketones still. We are trying to alternate 4 ounces of Powerade (dye-free!! I learned my lesson!) and 2 ounces of formula at a rate of 60ml/hr (2 ounces an hour for those of you that don't speak this language). At last check, she was still spilling ketones, but her glucose was at 80. She has diarrhea now, though. She is also getting congested. I am at a loss as to what exactly is going on and we are struggling to avoid a bounce-back to the ER. I don't think they will let her go unless she starts tolerating normal feeds if we have to go back. This is the first time we've dealt with both a gastroparesis flare AND metabolic problems and they are both working hard against us. So if you are the praying type, please pray that we can get this under control and avoid another hospital trip. KayTar would be heartbroken to miss Christmas at home!

A little off-kilter.

Wednesday was one of those busy kind of days; full day of classes for me, quick stop home for lunch, then off to get the kids...girl scouts for KayTar and musical theatre class for BubTar, at overlapping times, of course! KayTar was super fussy at scouts...she cried 3 times, which is very unlike her! We stayed long enough to complete one activity and then we left at the break to get BubTar to class and because I don't think she could have handled anymore. After we dropped BubTar at class, we came home (which wasn't the best plan, his class is an hour and it takes about 15-20 minutes each way depending on the lights) and KayTar did most of her homework. She was in an oddly cranky mood, just not her normal happy self for some reason. On the way back to get BubTar, she started to look pale and tired, so I suggested she close her eyes and rest. She dozed off a little, I think, but when we arrived she woke up. She said that she couldn't walk and I needed to carry her. She was very limp and let me tell you, it is no easy feat to carry a limp almost 7 year old! My stomach was up in my throat, too, because it was very reminiscent of the onset of her neuro episodes. She perked up a little after we got back to the car, though. It was just all very unsettling. As a side note, BubTar LOVED his class. Theatre is here to stay! We put KayTar to bed early to be safe, even though she seemed okay, and she woke up a couple of hours later, fussing about her eyes hurting. I don't know if the whole afternoon was just build up to a migraine or what, but she quieted down after some ibuprofen and seemed fine in the morning.

Thursday was a totally normal day, but when I picked KayTar up, she was crying. A friend had a Wish You Well letter (when the kids are out sick, their classmates fill a Wish You Well envelope with letters and stickers of well wishes for them to get when they get back) and KayTar thought it was one that she had lost after her absence. It wasn't, but she was sad because she remembered she had lost hers. Anyway, she cried so much that her nose got super snotty and I didn't have a tissue or napkin to give her, and she either forgot how to breathe using just her mouth or elected not to, because she stopped breathing and started turning colors! On top of that, I thought poor BubTar was going to have a heart attack in the backseat with her. We talked her through it and I had BubTar model panting with her mouth and she started breathing again. I know that the worst that would have happened was that she would have passed out and started breathing...but yikes! Where those self-preservation instincts when you need them?

Friday was mostly normal, but there was more uncharacteristic crying at OT, because as she was tracing and cutting out her handprints, they were turning out like "Voldemort fingers"! It was the worst thing to ever happen, evidently. The rest of the day was fine, the weather was nice and we played outside a bit before the boys left to go camping. In the evening right before we were going to leave to go get dinner, she started complaining of stomach pains, climbed into bed, requested her hot pack, and in less than 30 minutes she vomited up her entire last feed and a lot of bacon bits. It looked a little too much like chipped beef to me. Blech! Looks like it might be the return of her gastroparesis symptoms, unfortunately. We took it easy on the food and feeds yesterday and she didn't have any pain, but last night she told me that she was too full for any bedtime medicines or she might throw up. I hope that she hasn't entered back into that cycle of daily or near-daily stomach pain. The Augmentin seems like a stop gap at best and then I don't know what will come next...I'm a bit worried it will cause her quality of like to take a little hit (meds with unpleasant side effects, more time hooked up to feeds, ect), but hopefully not. My fingers will be crossed that she has a great week this week and the weirdness of this week was just a minor bump in the road!

GI Plan, take two.

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!

Back here again...

KayTar is having motility issues again. :(

Last Wednesday and Thursday, she as nauseated at lunchtime. I thought it was probably just from getting back into the school routine, though. Then on Monday morning, as I was leaving the kids' school after helping out in the library for a bit, I was surprised to find KayTar in the clinic! She seemed okay, but was there with tummy pain complaints. She laid down with the warm tummy bunny and chatted with the nurse and me, and bounced off to class not long after feeling better.

That night, I heard her calling me over the monitor and went to check on her. She said, "My meds are leaking on me." (meaning her g-button was open and leaking a little) I felt her shirt and it was soaked! But her button was closed, so it hadn't leaked. I turned her lamp on and was surprised to find her covered in Pediasure! She was insistent that she didn't throw up, so I checked with Josh to be sure everything was plugged in properly when he unhooked her from her feed and turned to pump off, thinking maybe we had fed the bed, but he said everything was plugged in and she was dry when he turned her pump off. The Pediasure was partially processed upon closer inspection, so she clearly vomited, but she didn't wake up or even know it had happened! That makes me super nervous, because if you don't wake up when vomiting, you don't protect your airway! She used to do this, but we usually heard it when it happened (coughing or some signal it had happened) and we had hoped she had outgrown it. Boo.

She had tummy pain at bedtime on Thursday night and again Friday night. Shortly after saying her tummy hurt, she vomited. She threw up undigested food that she had eaten roughly 10.5 HOURS before vomiting. Almost half a day earlier. It was still recognizable; chewed and swallowed, but that was all!

I'm not super thrilled to be seeing the return of dysmotility symptoms so soon. We started her on Augmentin on October 18th and started seeing improvement around the 24th. Things got progressively better through November and by early December she was *almost* back to baseline, the pain had stopped and she was back to normal feed volumes (but not normal rates). We never quite got there, but we were close enough to be pleased with the progress. But here we are mid-January and those old symptoms are back. At her GI appointment, the doctor said that we can go up quite a bit on the Augmentin, which is good, but if it only takes a couple of months for her body to adjust to the medication and subsequently need a higher dose...this probably will not be a long term solution, especially if this is a progressive problem. Of course, without the benefit of a diagnosis, nobody can really tell us if it is disease progression or what to expect down the line. So, we'll just continue to take it a day at a time and try to make the best decisions we can for her, with the information we do have.

For now, I've slowed her feed rate back down, but not had to reduce the volume. I'm also making her take a break from meat, hoping that the effort her gut would need to process that might be better used to process her formula more efficiently. If she continues to struggle this week, I'll put a call into the GI about increasing her Augmentin dose, too.

Almost, but not quite.

 KayTar had a really great week this week. She is back on 8 ounce bolus feeds four times a day and she went all week without extra visits to the nurse for abdominal pain or headaches! Thursday night, I was contemplating writing an email to the pediatrician to tell her how well things had been going...then 20 minutes after I had this thought, KayTar called out that her tummy was hurting. Blurg! I cannot adequately explain how much I want to get her back to baseline. We are getting close, several months and two new meds later, and I'm glad we are getting close...but we just can't get her all the way there.

I called her GI on Friday and spoke to the nurse. Before we just accept that this recurring pain is just part of her new normal, I want to be sure we aren't missing anything we can fix. When she saw the doctor last, there was no pain, just decreased feed tolerance and increased reflux...so I wanted to make sure she had all the information. The nurse spoke to the doctor and called back, but I was out and she spoke to Josh instead. She said to take KayTar off her motility medication for the weekend and start her on probiotics and call to update on Monday. The problem is that KayTar's pain preceded starting the motility meds, and it actually the big reason we went ahead and started the medication, so I already know that isn't the cause of the pain. I'm not going to risk ruining the fact that she is finally on normal feeds again without them having all the information, so I called back, but no one returned my call before end of day Friday. So, I started her on probiotics, but didn't take her off the motility meds...not until I talked to them to clarify the order of events a bit better.

We have had a good weekend. Josh's birthday was Friday and he had the day off, so we spent it together. We spent half of it at the kids' school, eating lunch with the kids and helping out with Jump Rope for Heart, then had dinner with Josh's family in the evening. Yesterday, we went to Turkey Trot at the kids' school, my niece's birthday party, and then Josh and I went out to eat with our best friends for dinner. It was a fun night! We picked up the kids after and shortly after we got home, KayTar grabbed her eye and said she had a headache...and a tummy ache. I gave her Motrin and heated up her rice bag for her tummy. She fell asleep pretty easily spite of it. She said it had been hurting for a while, but she wanted to wait until she got home to tell someone. I reminded her that she needs to speak up as soon as she starts feeling bad, so we can help her feel better sooner.

I hate that she is still having pain for no discernible reason. I hate to think that we may really have lost her baseline for good...which makes the possibility that she has something progressive carry a bit more weight. In truth, I've spent a bit more time thinking about that lately than I'd like. I still have no idea what I'm going to do next semester yet, though registration for classes is open now. But, I'm glad her feeds are back to normal. I'm glad she had a great week at school and only had pain twice. I'm incredibly glad she is still happy, bubbly, bouncy KayTar and she takes these little bumps on stride. That is truly a gift.

Monday morning update: She didn't tolerate her 8 ounce feed this morning. She called down and asked me to turn it off because she was feeling pukey. She only got a little over half of it before feeling yucky. We're trying 8 ounces again for her midday feed at school, so we'll see how it goes. I really need to knock on wood when posting good news of any sort...when will I learn?!

A Halloween Joke from KayTar.

KayTar picked her Halloween costume yesterday, a skeleton. She was wearing it around the house yesterday, trying out different skeleton jokes so she would have some good lines for Halloween. At one point, we were shooing her out of the room to go play and she said, "Or I could go BONE myself! Get it?! BONE MYSELF?!" then she started laughing and pointing at her costume.

We almost DIED! We certainly got it, but she sure didn't!

We told her not to use that one for Halloween...I can just imagine her telling someone, "Give me some candy...or I'll BONE you!" Oh Lord...that kid is a hoot.

PS:  She doesn't have a UTI (the culture was clean). She is still having near daily abdominal pain and she is down to 4 ounce feeds. I don't know what is going on, but we're going to try the motility meds starting tomorrow. I don't know what else to do for her.

This weekend was sponsored by...

Miralax and Underjams.

KayTar has been having some GI issues again. For a couple of weeks now, she's been going several days between bowel movements (which means her constipation is getting out of control) and we've toyed with her Miralax dose, but haven't been able to work things out easily. She has been waffling between liquidy stool and nothing...so this weekend we upped the Miralax and stayed close to the bathroom! KayTar enjoyed some movies and relaxation time in my bed and we got things moving. I think she is all cleaned out now, the tricky part will be finding a dose that keeps things moving from here on out. She actually had fewer accidents this weekend than she normally does, because things were running like clockwork. I'd send her to the toilet after a feed and she'd take care of business. However, we can't keep things THAT loose for long, because she would be losing too much fluid that way. So hopefully we find the right dose for her!

In other GI news, we increased KayTar's feeds last week and it started out well, but she had some post-feed tummy pain a few times and then she vomited up her entire feed Friday night. She said she was too full. It was the first time she has vomited in a good long while (for her anyway) and the increase in formula volume was the only real change. Saturday morning, we went back down to 6 ounces at a time and she's been okay, mostly. She also threw up last night (a few minutes prior to puking, she was crying because she wanted to sleep in my bed for a third night in a row). I couldn't figure out where her puke bowl was in the dark (it was hiding under the bed) so I had to run her to the bathroom and we didn't quite make it all the way. There was a bit of a trail left behind us. Yuck. She seems okay, though...just part of being KayTar, I guess!

I'm a little disappointed that the transition back to 8 ounce feeds was not a success. While 6 ounces at a time is totally workable and much better than 4 ounce feeds, I just don't like that we've lost ground or that we're looking at a new normal for her. Although KayTar has a history of new issues cropping up on her, this is the first time I feel like we're likely seeing a decline in organ function (well, other than her progressive hearing loss). Her reflux and constipation have gotten worse and her volume tolerance has decreased. It is SLIGHT, so slight, but it is still a step in the wrong direction. Her GI doctor did write a prescription for Augmentin to be used as a prokinetic agent (200mg, 4 times daily) to try to get her back up to normal feeds, but I'm torn about starting that at this point. IF this is progression, then we are likely to see more at some point, and if we pull out the big guns now, there won't be many next steps to take LATER when we might be looking at a more significant decline. We can live with five 6 ounce feeds every day. It is a little more inconvenient, but not too much of a change overall. But if in a year or two years or three years, she starts to tolerate less and less volume, I don't want to be out of options. I'm getting ahead of myself, I recognize that, but these long term concerns are a factor in what decisions we make right now. I think at this point, we're going to keep her at 6 ounce feeds for a couple more weeks and maybe attempt another transition. I'm not sure if time will make any difference, but it is the course of action that seems least risky for her right now.

The GI Plan.

KayTar had her follow-up appointment with her gastroenterologist yesterday. Dr. R is one of my favorite doctors and not JUST because she has let me shadow her service before! She is always interested in KayTar as a whole child, not just a GI tract. She talks with both of us and even allows KayTar to have a bit of stage time to tell jokes/do impressions or whatever she happens to think up. I have never felt rushed in one of these visits, which was especially appreciated this time as we had a bit more to discuss than usual, since KayTar's GI system has been the biggest troublemaker lately.

First, we discussed the gastric emptying scan. She confirmed it was abnormal and that KayTar is having motility issues. I asked if the half-emptying time is volume-dependent (meaning that it always takes her stomach 73 minutes to just move 1.5 ounces out) or not (meaning that 4 ounces would move through in the same time frame if it was half of the stomach's contents), and she said in MOST people, it is not volume-dependent and the stomach should half-empty in the same time threshold whether there was 3 or 8 ounces in there to start. However, she qualified that with a "BUT, this is KayTar, soooo I can't say if that is the case here or not. Her motility may worsen with increased volume." Basically, the scan was enough to confirm the clinical symptoms we were observing in her sudden volume intolerance and increased reflux, but it can't give us more precise information.

Then, she gave us the new plan. She is switching KayTar's PPI from Prevacid to Nexium, which we will start tonight. Then, in two weeks, she wants us to try to transition KayTar back to her normal formula volume. If it works, great! If not, then we will start giving KayTar a dose of Augmentin prior to every feed as a prokinetic to help induce more normal motility in her gut. If we are still unable to get her back to regular feeds, we will just continue with this smaller/more frequent feeding schedule, and follow up in January. She said she likely will not order any further testing until summer (at the earliest) because she doesn't want to disrupt KayTar's school schedule and the next tests are rather unpleasant. She said that if her overall intake and growth continue to be good, we may put it off until it is really necessary to put her through. Hopefully one or both of the new medications will help get her back on track, but if not, I'm fine with the plan she has laid out for KayTar.

Finally, we discussed what might have triggered this change. She said it may be a post-viral phenomenon from her relatively minor viral infection in June...but probably not. She said it may just be "a KayTar thing", which is the category most things fall into. She also said it could be disease progression (what disease? we don't know!), but that said she'd like to ignore that last one and that I probably would, too. She is definitely right about that. Losing ground is one of the hardest parts of any disorder/disease, I'm sure, but it is especially hard when you don't even know what disease is causing it to happen and if it might be preventable if you DID know what you were up against. So, for now, we are just going to keep on trucking and not worry too much about that aspect of it. We'll try the new medications and then go from there, depending on what the results are. The new feeding schedule isn't the worst thing to ever happen, in fact, she hasn't vomited once at school this year (knock on wood), but it is more disruptive for her and for the people caring for her, whether at school or at home....so if we can get her back to "normal" (or maybe even up to 6 ounces every 3 hours), I think everyone would be pleased!

Completely unrelated photo ;)