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Sympathy and a message to parents & doctors about reflux

I've mentioned this briefly a couple of times before, but I've had issues on & off for the past couple of years with GERD. In that time, I have gained sympathy for my 3 little girls who all dealt with reflux as babies, and especially Raya who had the worst of it as a baby and still deals with it at the age of 4. Although I know that there's no way I can fully understand what Raya's medical conditions have felt like to her, I thought I was doing a pretty good job acknowledging her discomfort and imagining what she might feel like when her GERD is acting up because of what I've dealt with in the last couple years. After the night I had last night, however, I'm now fairly certain that I had NO real comprehension before and am a bit closer to it now. I decided that maybe if I describe in gross detail how my night went, other parents might have a little bit better understanding of how their children might feel too. (and maybe a medical professional or two might see it and gain something from it as well.)

Being 30 weeks pregnant at the moment, it's no surprise that heartburn is my frequent, if not constant companion these days. Before I was pregnant, I was taking Prilosec in order to hopefully prevent a 3rd recurrence of the esophageal strictures I had to have dilated last year. An esophageal stricture is a band of tissue in the esophagus that becomes tight and restricts the diameter of the esophagus. The tighter the stricture is, the more difficult swallowing becomes. Mine were in the lower end and although they definitely could have been worse (meaning that I was not having food impactions) I had the constant sensation of food being stuck in my throat and swallowing certain things like bread was taking more and more effort. And more water. As much as I didn't like being on Prilosec because of the way it made my stomach feel, it worked better than anything else I had tried (and there were several things, pharmaceutical and not pharmaceutical) and was much cheaper and less painful than another dilation. However, proton pump inhibitors like Prilosec can't be used while pregnant so I had to stop taking it and use Zantac, an H2 blocker, instead. That was my first lesson in sympathy because I learned quickly that although Zantac helps, it doesn't do what Prilosec does and I now understand why Zantac & other H2 blockers alone are not enough for a lot of babies & children with GERD. It's still better than nothing though and doesn't make me gag like Tums.

So there's a bit of history. During this pregnancy, I've spent a lot of nights sleeping propped on the couch because it's more comfortable than laying in bed. Yesterday was my birthday so I ate different food than I normally do and I guess that's probably what was responsible for my miserable night. I put on a documentary and dozed off on the couch. It wasn't long before the heartburn started, and I found myself waking up several times in the next couple of hours because of how badly it burned. It was a MUCH stronger and more painful burn than my usual heartburn. At some point in the night, Raya woke up and got upset because I was not snuggling with her (how dare I!). She joined me on the couch with the standard 2 pillows, 2 blankets, droves of stuffed animals, and her feeding pump backpack. We snuggled up on the couch & went back to sleep.

*This is where it gets gross so stop reading now if you don't want to hear about what a bad night with GERD feels like.*

Shortly before 2am, I woke up more or less coughing & choking on refluxed stomach contents (i.e. vomit). (and for a brief second, I thought about how ironic it would be if I vomited on Raya for a change instead of her vomiting on me...) My eyes were watering, my esophagus and lungs (or maybe just bronchial tubes but whatever) were burning, I couldn't catch my breath, I was on the verge of gagging and vomiting from the taste of what I had refluxed in my sleep, my stomach felt more full than it had after I finished eating dinner, and I felt HORRIBLE. I wiggled my pregnant body out from under a peacefully sleeping Raya and tried in my dazed, half asleep state to figure out what to do next. I was coughing still because I could feel that there was still refluxed stomach contents in my airway, and every time I coughed and something came up, I had to fight back the gag that wanted to follow because of the rancid, bitter taste of stomach acid and digested food. (hypersensitive pregnant gag reflex, remember?) For the next 15 minutes or so, I went back & forth between coughing & spitting into the sink trying to clear the rest of the nasty stuff out and dashing across the bathroom to the toilet thinking I was going to throw up. When that was pretty much over, I had to get the taste out of my mouth so I could stop gagging. I loaded up my toothbrush with about twice as much toothpaste as I normally use and tried to brush the taste out of my mouth to no avail. I used the tongue scraper (which also almost made me gag) and that didn't get rid of the taste completely either so I found a strong tasting piece of mint candy and ate it. When I had gotten the taste out of my mouth enough that I was no longer having to fight the urge to gag and didn't feel like there was stomach acid in my lungs anymore, I laid back down on the couch with Raya. That lasted about 10 minutes and then I had to get up again because I still felt awful and kept coughing, which made my mouth taste like vomit and made my chest burn. I was also still having very painful heartburn. I was awake for a good 2 hours (watching more documentaries on Netflix) before I was finally comfortable enough to go back to sleep but still kept waking up every so often because of the intense burning in my esophagus.

When things had calmed down a little after the first big episode and I wasn't feeling quite so desperately awful, I could not help but think of Raya. {pardon me while I get a kleenex...or a handful of kleenexes *sniff sniff*} Now that she's starting to be able to communicate how she feels physically, she tells me more things than she used to. It used to be that she would get a certain look on her face and I'd guess that she had just refluxed into her mouth, but I didn't really know what to do for her about it. Now, she gets that same look on her face and tells me, "Mommy, I have puke in my throat." or "Mommy, I have puke in my mouth." or "Mommy, I have a yucky taste." and she'll ask for "a Tum" to help with the burning and something to get the taste out of her mouth. She tells me every single day that her throat hurts. I've never told her no when she asks for Tums (unless she's already hit her daily limit) because clearly, if she's asking for something like that then she needs it, but now I GET IT. It feels AWFUL. Thinking back on all the times that I knew she was refluxing as a baby and all the times she spit up or vomited bile (which I can only imagine tastes 100x worse than normal vomit), I feel horrible knowing that she just had to live with that taste in her mouth since she was so orally aversive that trying to put something in her mouth to get the taste out would have only made her vomit more. Last night was certainly not the first night that I've ever had stomach contents end up in my mouth or the first night I've been uncomfortable because of GERD. I think we've all had those little moments where we bend over too far after we just ate a big meal and something makes its way back up, or we burp and it's not just air that comes up. What I felt last night was far beyond that though, and I imagine that's probably closer to what GERD can be like for a child like Raya.

What struck me was the feeling of confusion and panic that I woke up with as I was choking on horrible tasting refluxed stomach contents that I had inhaled in my sleep and trying not to vomit. This is what broke my heart as I thought about what that feeling must be like for a baby like this:
This is Raya 7 days before her first hospitalization. I took the picture at 9pm, which was probably 3-4 hours in to her nightly fuss-fest. She was miserable. She cried all the time, and I think last night gave me a little more insight into how she must have felt. How terrifying must it be for a baby who does not have the ability to understand what is happening to them? I could at least think to myself, ok, I'm not dying here, I can still breathe, I just need to cough it all out, take a Zantac, and pop some antacids and I'll eventually feel better. I'm an adult that's capable of doing all of those things for myself and my brain doesn't shift to fight-or-flight mode. I already know what it feels like to be the parent of a miserable refluxy baby. I've had more than one of those. You run out of things to do to help them feel better pretty quickly. You try all the things that your friends & family swear will cure their reflux. When none of that gives the relief they need, you take them to the pediatrician and maybe to a GI doctor and put them on expensive medicine and maybe an expensive specialized formula to try and help what you haven't been able to alleviate for them with the things you've already tried. The doctor tells you they've done what they can & you'll just have to wait for them to outgrow it. "Don't worry, Mom, it's just reflux. It's not a big deal, lots of babies have it. She'll outgrow it." Well guess what, Doctor. If those poor babies feel ANYTHING like how I felt all night last night, it IS a big deal. It is a HUGE deal, and no freaking WONDER they cry inconsolably all the time! No wonder they can't lay flat and don't sleep through the night or nap unless someone is holding them and no wonder they stop eating as soon as they've taken enough to make the discomfort of being hungry go away! No wonder they become afraid of food and would rather feel the pain of starvation than risk the terrifying and painful feelings of refluxing acidic stomach contents. (Did I mention it's after noon and I still don't feel like eating because my esophagus is still on fire and feels raw and my stomach still feels full even though I haven't eaten since dinnertime last night?)

I am not professing to have all the answers to dealing with GERD. Obviously I don't have them or I would not have had the night I had last night and my 4 year old would not still be on adult doses of 2 different reflux meds, without which she is miserable. What I do have is an inkling of what it must feel like to experience miserable, painful, and scary symptoms and not be able to do anything about it except refuse to eat.

Parents, if your baby is experiencing reflux that is affecting their personality, demeanor, sleep habits, eating habits, or ability to gain weight, be proactive. If you are breastfeeding, keep a detailed log of what you are eating and your baby's symptoms and look for patterns. Keep a detailed log of what your baby is eating and drinking as well, including the quantity (or time if breastfeeding), how long a meal takes, the baby's mood while eating, whether or not they keep it all down and an estimate of how much comes back up if they don't, whether they seem fussy or gassy in between meals, and anything else that you feel is significant or unusual. Do all of the standard reflux things, like keeping the baby upright for 30 minutes after he or she eats, talking to the pediatrician or GI about adding rice cereal to help the milk or formula stay down (and add calories if weight gain is slow), use gas drops, feed smaller amounts more frequently, stop part way through a feed to burp the baby, and avoiding foods that are known to cause excess gas or reflux. There are also natural remedies and dietary modifications that can help with reflux. The more information you are able to provide your baby's doctor about what you are doing to alleviate symptoms and what seems to make them better or worse, the better able he or she will be to assist you in finding the root of the problem and addressing it. Going to the doctor is not cheap and specialists can be difficult to get in to, so being prepared going into appointments helps you maximize your time and money by making more efficient use of the appointment time.

Not all reflux needs to be overseen by a specialist. A baby who spits up all the time but has no signs of discomfort, is still on track with weight gain, is not showing signs of aspiration of reflux (i.e. pneumonia/respiratory infections), and is not having difficulty eating is probably just a "happy puker." I had one of those. She spit up until she was 18 months old and it drove me crazy. We could only feed her light colored food or we ended up with spit up stains all over the carpet. Most of her baby clothes were totally trashed from all the spitting up. BUT. In spite of seeming like she spit up more than she kept down, she still stayed on track with weight gain and she was a good eater. She did not need reflux meds, she just needed to keep eating and keep growing and wait for her lower esophageal sphincter to mature so it could keep everything down. In stark contrast, my other two girls were miserable refluxers who could not lay flat to sleep, had to be held upright for a while after being fed, cried and arched their backs because of reflux, and had difficulty gaining weight. THEY needed to see the doctor for their reflux, but the first one did not.

As much as it pains me to say this, your child's reflux will not be fixed overnight. It could take a long time. For some kids, making a few small adjustments to feeding routines or starting them on a reflux med can make an immediate difference. For others, it takes much longer. There are other medical conditions that can mimic or cause reflux, and sometimes it takes diagnosing underlying conditions to finally be able to relieve the reflux. Understand that there will be a process and it will take a lot of patience. Don't assume that because one doctor has not fixed your baby's reflux as fast as you think they should, that another will be able to. There is nothing wrong with seeking a second opinion but it is important to stick with one doctor long enough for him or her to get the full picture of what is going on with your child before you jump ship and go to another one.

One more note to parents. Learn what reflux looks like beyond the obvious symptoms of spitting up, crying & arching during & after feeds, and things like that. If you are having to go to great lengths to get your baby to eat and drink, something is not right. If the only time your baby will take a bottle or nurse is when he or she is asleep, there is a problem. If your baby will only take an ounce or two at a time and then stop, there is a problem. If your baby seems to spit up more than they keep down, there is a problem. If your baby is crying inconsolably for hours at a time, there is a problem. If your baby is projectile vomiting rather than just spitting up, there is a problem. If your baby is a "happy puker" but keeps coming down with upper respiratory infections, there could be a problem. Any and all of those things are warning signs that reflux is at least worth discussing with your child's doctor, and some of them may point to something beyond reflux. My point is not to scare anybody, but I want parents to know that they should not just try to tough it out or suffer through it. I am especially feeling that way after the night I had last night. No baby should have to go through months of feeling that way, and no parent should have to go through watching their baby suffer through it.

Doctors (and PAs, NPs, and nurses), when a stressed out, sleep-deprived mother brings a baby into your office and goes through a list of the baby's symptoms, please for the love of Pete, do NOT tell them it's "just reflux" and their baby will eventually grow out of it. Your job is hectic and stressful, but please be patient and listen, and give the parent the benefit of the doubt. It may very well be the case that the child IS suffering from reflux, but understand that even for babies that don't seem miserable while they are in your exam room, reflux can be horribly painful. (I promise, it's miserable.) Please take the time to listen before simply prescribing Zantac or Prevacid and sending them off on their way. Dig deeper. Find out what the parents have already tried in order to alleviate the baby's symptoms. Make sure the parents know all of the little reflux tricks, like elevating the crib mattress to a 30 degree angle, keeping the baby upright after a feeding, feeding smaller amounts more frequently, and fortifying with rice cereal. If they have not kept a detailed log of symptoms and feed schedules, have them do that and see if you can help them identify a pattern that would lead to eliminating offending foods or figuring out a more successful feeding schedule. Know that they are coming to you because they are desperate for your help, and help them. Look at the child as a whole. Beyond "just reflux," if you see a baby that is projectile vomiting, refusing feeds, losing or not gaining weight, having recurrent respiratory infections, or becoming increasingly reliant on "dream feeds," dig deeper and don't write the baby off as just another "happy puker" even if they don't seem particularly uncomfortable while they're in front of you. If the parent tells you that the baby is crying for hours on end, believe them, and don't just tell them they have a colicky baby. Try to help them figure out why the baby is so miserable and help them understand what their options are. Speaking from the perspective of a parent, I can also tell you that it is crucial to help parents understand that successfully treating reflux (and underlying medical conditions that might be discovered in the process) will take time. Tell them that there are things that can give relief fairly quickly but that there may not be a magic quick fix for everything the child is experiencing. It DOES take time for a child to outgrow reflux, and some never do. Be honest and forthcoming with them so that they know you are truly interested in helping them. If you are going to order a test or lab, explain to the parents what you are hoping to find or rule out by ordering that particular test and why it's important. By explaining your plan of action to them and explaining what tests you're ordering and why, you will spare them the trauma of what they might find on Google if they attempt to research on their own. If you are a general pediatrician or family practice doctor and aren't sure what else to do for the child, help the parents find a good pediatric gastroenterologist who will know what steps to take next.

On a final note to doctors, please be careful with the language you use when you speak to parents. It is obviously important for you as a practitioner to be sure that the baby is being properly cared for, but it is possible to do that without making the parents feel as if they are on trial. Chances are that they already feel guilty and like they are failing as parents because they can't make their baby feel better, and the last thing they need is for the doctor they are seeking help from to say things that make them feel worse or like it's their fault. Guidance and correction can be given without being accusatory. They need to feel that they can trust you or else the partnership you are all trying to form with the purpose of caring for their child will never be successful.


I didn't mean for this to be so long, but I woke up this morning still feeling awful, both physically and emotionally, and felt like I needed to not let this go without speaking up. For some people, reflux is not a big deal. Some babies spit up and that's just the way it is, and they do grow out of it. For others, (as I have learned) it is incredibly painful, unpleasant, and can be very scary. It can do damage to the esophagus (again, I learned that from personal experience) and anything else it comes in contact with (i.e. teeth, sinuses, etc.). Just ask the baby clothes that Ashtyn and Kaida wore. When I got them out for Raya to wear, I found that one of the shirts that used to have a very cute printed pattern all over it had a large patch down the front where the pattern had literally been eaten off the fabric by spit-up. Not exaggerating even a little bit. Bottom line, if your baby is miserable and you are miserable from them being miserable, do something about it, and get your doctor to help you do something about it. NOBODY should have to feel like that and there are ways to help.

Comments

  1. Thank you for posting this!
    I'm the mom of a severe reflux tubie (now former!) and people just did. not. get. it.

    Now that that is out of the way, I do want you to do me a favor and take your blood pressure, though. Stomach issues that severe could be a sign of HELLP syndrome and is very, very serious. Hopefully it is "just" reflux but check yourself out, too.
    (and the two can feel very similar. My first pregnancy- it was HELLP (liver failure hurts!). Second pregnancy I was convinced it was HELLP again, turned out it was "just" reflux that time.)

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  2. Great post -- I'm mom to a tube feeder, who now has a nissen fundoplication and is on reflux meds and specialized formula to alleviate his GERD. I also developed severe GERD myself after a twin pregnancy and when the available medications no longer helped, I too had the Nissen -- a tough surgery, but well worth it for me.

    I think so many of the negative behaviors we seen in kids with special needs (health and/or developmental) can likely be attributed to reflux pain. It truly is miserable and debilitating.

    ReplyDelete
  3. Yes - excellent! I am printing this out and keeping it on file! I was always very frustrated when told, "we just have to wait and see - she'll grow out of it!" In the meantime, all of us suffered. What finally did the trick for us was switching to a blended diet and reducing quantity (turns out she is also very volume sensitive).

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