P’s upper GI test
Yesterday was a bit of an interesting day. P and I went to her usual music class (which we love, and she had a blast bopping around and trying to eat the egg shakers), and then I had to take her to Radiology at the children’s hospital for her barium swallow (upper GI) test.
This is something I’ve been wanting to have done for months, especially since she’s been having the (occasional, but still alarming) choking incidents.
Her original pediatrician reminded us that it would take months to get into GI, and they usually only rush kids in if they’re not gaining weight appropriately. She said she’d put in the referral to get us in the queue, but didn’t. We now have a new pediatrician group with a solid action plan for P. Even though she’s gaining weight and thriving, these new pediatricians want make sure that there isn’t anything structural going on to cause the choking, like a narrowing of the esophagus. They are amazing, and it’s been reassuring to hear that someone else is concerned about her digestive issues and genuinely wants to figure out this question mark.
Within a week we were scheduled for GI, and had our barium swallow test scheduled. Yesterday was the day, and it was something I was pretty anxious about.
Here’s how it works:
-Your baby or kiddo is tested on an empty stomach, and during the X-rays, they have to drink a barium substance. This is a type of dye, so that they can take X-rays while the child is ingesting the barium to check on how it’s processed and if any reflux occurs. Apparently the barium doesn’t taste great, but P was really hungry, so she chugged it down like a champ.
-The tricky part: the kiddo has to stay still for the pictures, which is really hard for a wriggly baby. They put soft sandbags on her arms and legs, and I was right there to talk to her and stroke her hair while she drank the bottle. Even so, she was (rightfully) pissed off. Ugh, I felt so bad.
-They take the X-rays, which takes a little while (the kid lies flat on their back and then they take X-rays on each side), and that’s it!
Here’s the sign they had posted in the dressing room:
The nurses and staff were wonderful. They were so kind and lovely to P -and took turns coming in to say hi to her while we were getting ready- and saw us 30 minutes before our scheduled appointment. I figured I’d show up early since we’d finished music class and were already in the car. They had said not to let her eat for 4 hours before the test, and it had just hit 4 hours, so I thought if maybe we could get in early, she could eat sooner. (She was so hungry, poor goose.) When I told the receptionist the P was pretty hungry already, they took us right back. It was amazing.
I was also thankful I could be right there with P while she got the X-rays done. They gave me a lead smock to wear, and I could talk to her and hold her little hand. When she started bawling, I wanted to cry along with her. Even though she won’t remember all of this reflux stuff, she’s been “doctored” so much. It’s been a lot of appointments and testing.
The radiologist was in the room with us (along with two helpful techs), and unlike any time where I’ve had X-rays, he told me exactly what he saw while it was happening. (Usually they make you wait until the doctor can review the X-rays to hear any ideas of what’s going on or the results.) The good news: he didn’t see anything structural going on. There was a small amount of refluxing after she drank the bottle (expected), but all of her digestive organs and systems seemed to be working as they should. We are so thankful.
Our sweet nurse went to go find a toy for her -each kid who has to get X-rays or testing done gets a toy- and came back with this beautiful homemade blanket. She said that volunteers drop them off for the babies, and she thought maybe P would like it. Just seeing the blanket reminds me that an actual person made it with a lot of love, and it was a very sweet little gift.
With P, I’ve definitely stepped out of my comfort zone. I’ve been a lot more persistent (aka annoying) with the phone calls and reminders to doc offices and insurance, because I know the squeaky wheel gets things done. With Liv, I was afraid to take her to the pediatrician by myself for her to get a shot, and now I’m regularly toting both kids to doctor and specialist appointments. You just do what you have to do.
Cheers to crossing this off the list, and looking forward to our GI appointment next month.
If any of my fellow reflux mama friends are anxious about this test, it wasn’t nearly as bad as I thought it would be. Let me know if you have questions or need anything from me.
xoxo
G
Home for the holidays
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So glad it’s nothing structural!
thank you!
I’m glad it went well for her. Good to hear she doesn’t have anything structurally wrong. I had one refluxer with a normal test and one that had a structural defect. So it’s good to get it done just to make sure. What are your next steps?
thank you. i’m so glad, too.
so next, we’re getting an appointment with an ENT (depending on that, we’re getting blood work done to test blood sugar levels) and seeing GI in july to see what they say about everything. the ped also wants me to try a bottle of alimentum formula to see how she does on that compared to the elecare. i’m a little freaked out about it
Great news! You must be so relieved!
yes! giant sigh of relief
Oh man. So glad that Ms P is okay. Our third was born in April and our fears of having another reflux baby have been accurate. He has it and was started on zantac immediately which isn’t helping. He cokes OFTEN and our current pediatricians are so laid back about it. Drives me crazy. Currently on the search for a new ped bc after dealing with a reflux (angry baby) for almost 18 months with our middle child there has to be something to help this one. (I feel so bad when he screams and cries for hours, plus my sanity needs a break).
oh man. that is so rough. the choking is THE WORST. our first ped was very casual about it and i was like “she STOPS BREATHING.” hope you find a new ped that you love. have you guys tried prilosec? that helped p more than the zantac
hope you get some answers (and sanity. i feel ya) very soon
Great job following up mama! P is lucky to have you. So glad there’s nothing structurally wrong. Hope you get additional answers soon <3
thank you so much <3
So glad it wasn’t anything structurally wrong! I’m sure that was a relief! I’ve had the testing done (as an adult) and I have to say, the barium is pretty terrible. It’s the consistency of glue and a bit grainy, like an antacid. Flavor isn’t terrible, but also nothing I’d want again either! Having it done as an adult and knowing what that experience is like, I have to say P was a champ! Way to go, Momma!
yes! it looked pretty nasty but thankfully p drank most of it with no probs. glad it’s over
xoxo
I’m so happy for you that nothing is structurally wrong! My son is 6.5 months, I can’t imagine having to go through something like this. I hope her reflux issues continue to get better!
thank you so much! happy that we’re getting some answers
I’m so glad you switched peds! What a mess! We did this exam along with a swallow study (he apparently aspirates a bit when drinking) and it was a huge eye opener. We did this at 8 months and he’s 10 months now and doing much better (no more oatmeal in bottles) as he’s standing and cruising on furniture.
We are on Nutramigen which our GI recommended over Alimentum due to the DHA and a few other things he thought was better.
We never had choking but projectile spit ups and spit ups at night (he would sleep through it). We are slow on weight gain and are also seeing a feeding therapist.
I also recommend an ENT! Reflux can cause congestion, mouth breathing, ear issues, etc. We have all of the above and are getting tubes next week.
Big hugs and thank you so much for writing about this. XOX
ugh. it has been a roller coaster, but i’m so glad things are finally happening! how does he do with solid foods?
they put a referral in for an ENT, so i’m hoping we’ll get in the next couple of weeks. apparently p’s tonsils are pretty swollen which could be affected her digestion.
sorry to hear that you’ve been through this too, but happy your guy is feeling much better. i will ask about doing the nutrimagen instead of alimentum. at this point, if she can drink something that isn’t $20 a day that would be amazing haha
xoxo
The nutrimagen is $40 for a can that lasts about 3 days – much better!
Solids was very iffy in the beginning as he’s a mouth breather. The feeding therapist said he’s prioritizing breathing over chewing and swallowing. He’s done much better in the last two weeks and I think once he can breathe we’ll be good.
They might need to remove her tonsils or antnoids. Your peds might be able to call the ENT and see if they can get you in sooner. Best of luck!
that’s interesting because p is a mouth breather too. the ped mentioned that her tonsils look red and swollen so we’ll see what the ENT says. they put in an urgent referral so we’re hoping to get in this week or next
thank you for the luck!!
Glad the test went well!! She’s so freaking cute!!
I had to taste that barium during training when I did modified barium swallows as a grad student for speech therapy. It wasn’t great in my opinion, but a couple of my classmates liked it! It can cause some constipation as a warning. So glad P doesn’t have anything structurally wrong! A little reflux after swallow is normal, as long as she’s not then aspirating on that. I hope you guys figure out a great plan of action and little P doesn’t experience more scary choking episodes!
I like the part at the end where you mentioned that with Liv you were kinda scared going to the ped by yourself of her getting shots, but now that you have two and P needs special care, you’re a total go-getter because you have to be. Gives me hope because I think I’ll be the exact same way. Taking my baby to the doctor alone seems so scary right now (she’s not born yet).
seriously, i used to be scared to go ANYWHERE with liv (especially the doctor). you get the hang of it, and do what you have to do 🙂 you’ll be amazing. excited for you!
Hi! I’ve been following your blog for years but thought I’d finally chime in. I’m sure you’ve been googling up a storm since P was born, but just wanted to tell you my son’s story–not to cause alarm but to give you maybe another topic to bring up with GI doc. His barium swallow test showed reflux too, but months and many visits to all sorts of specialists later, he has been diagnosed with Eosinophilic Esophagitis (EOE). It’s most common in white males, so praying P doesn’t have it, but some of her symptoms sound eerily similar. Just wanted to throw it out here in case you’ve never heard of it.
that is good to know- i’ll google it now. i’m excited that we’re going to an ENT next week to get some more insight for what may be going on
Good–hopefully that helps! My son had two sets of tubes and his adenoids and tonsils out before we realized he had EOE. After researching EOE I realized that some kids display symptoms of upper respiratory issues like that. It’s hard to say if he would have still had all the surgeries if we had diagnosed EOE earlier. I can’t let myself think too much about the past but instead go forward from here. Best of luck for your sweet girl!
how did they diagnose it for you? did he get a biopsy of his esophagus? did it show any inflammation or swelling in his upper GI test?
They put him on acid reducer for 2 months and then did an endoscopy that included a biopsy. We thought it was an ENT issue at first because many of his symptoms were ear, nose and throat area. Adenoids were big and infected and came out first. ENT did a scope to see them, but the scope only saw the upper nasal cavity. Still had issues after they were removed, and tonsils continued to swell to the point it was dangerous. So we got his first endoscopy done at the same time he got his tonsils removed. He is also a mouth breather and wheezes when he gets sick and has eczema–all EOE symptoms though not everyone with EOE is affected in those capacities. Right after the endoscopy was completely, the GI doc showed us images and you could see how it was swollen. The biopsy came back a week later and revealed the eosinophil count of 80, which is over the 15 count threshold. So they based the diagnosis off the eosinophil count and his choking/vomiting and food allergies. We thought he only had one food allergy at the time (cashews), but turns out he has a ton and we’re still trying to figure them out because with EOE you don’t always have typical allergy symptoms, but a reaction in your esophagus. If you have any questions feel free to email me too. EOE is still so unknown in the research realm but is becoming diagnosed more and more frequently. GI docs typically team up with Allergists to figure out a treatment for EOE.