Belinda believes she has been having swallowing issues for about three years now. When she first mentioned it, Ben and I would tell her to chew her food more, or drink more water with food. He and I have always had problems where food gets stuck in our throats, so we didn’t worry about it. She didn’t make much of a fuss.
After a while, she began complaining that she was throwing up a lot. She was also going through some anxiety and depression over issues with friends, so I thought she was saying that to get out of things. I didn’t see any evidence of vomit. When she told me it was in the bathroom trash can, I would look and there would be just chewed up food in there. I told her that wasn’t vomit, and she didn’t push it.
Then we were at our homeschool co-op and we were at lunch. Belinda was eating, and then she stopped and sat very still. “Are you okay?” I asked and then she held up a finger. And then she crossed the room and discretely regurgitated in the trash can. And then suddenly everything horrifyingly clicked into place.
We went to her pediatrician, Dr. Cosby, shortly after. Looking back at emails from the doctor’s office, I believe that was in September 2022. Dr. Cosby thought Belinda might have reflux, and prescribed medication for her. Belinda took it and it didn’t do anything. So she got a different prescription. It also didn’t do anything.
After this, Dr. Cosby referred her for a swallow study. It took a while because first they had her down for a regular swallow study, and then realized she was supposed to have one with a speech therapist present. So that happened on March 29, 2023 at Integris Baptist. Belinda drank water and ate crackers while they looked at her with an x-ray. The techs all discussed how off her results looked, and they kept having her swallow to try to get everything down. It didn’t go down.
From there, Belinda was referred to the OU Children’s gastroenterology clinic. She started seeing the Nurse Practitioner, Jacee Harcourt, who also thought it was reflux and put her on another medicine. Around this time I had to coach Belinda to not say “throw up” or “vomit” anymore because they always zoomed in when she said that because they thought she might be bulimic. Instead she would say she “coughed it up” or “forced it up.” After the medicine for reflux also failed, Belinda had an Upper GI Endoscopy on August 3 at Children’s.
In late August, Belinda couldn’t swallow anything and she almost fainted at dance and I got scared. She told me she hadn’t been able to get any water down either. I was able to get an appointment at Children’s with her and got her there they next day. When they realized she had lost 30 pounds, they admitted her to the hospital. We didn’t even get to go home and back. They got an IV in her and started fluids. My notes say she had a Floroscopy Upper GI on August 24. She also had an NG tube put in during the hospital stay, and I don’t know if the Upper GI was part of that or if they were different procedures. I was just glad that they were taking this seriously.
I finally mentioned what she’d been going through for the first time on facebook, on August. 29.
A friend told me this reminded her of her sister’s Ehlers-Danlos Syndrome. I didn’t think much of it (lots of people have told us about their swallowing issues during all of this) and then I googled it and a person was stretching their skin away from their face, which Belinda can do. So that was startling. I mentioned it to the doctors on call and they definitely did not think much of that. I felt shut down and unheard.
Yuck, looking back at facebook I reread after this how much trouble we had with the home health people. First it was terrible finding one with our insurance, and then it was terrible getting the supplies we needed. It’s awful that things have to be so stressful when you’re already dealing with so much. I did get help from a homeschool friend who has a daughter with a g-tube, and she gave me a lot of reassurance and advice. I’m so thankful for that.
Anyway, we met Dr. Altaf around this point. Both Dr. Altaf and Jacee Harcourt seemed to believe Belinda had Rumination Syndrome. This is a rare disorder where basically the person swallows food, then throws it back up, and it’s a mental thing but they don’t realize they are doing it. I did not accept this because she wasn’t even getting the food to her stomach.
Sometime in here, Belinda’s cat Rosemary pulled the NG tube out and we had to go to Children’s and get it put back in, which was traumatic. She kept it in until partway through October, at which time she had gained the weight back and the doctors allowed her to remove it. She did it at home and I videotaped it and that was a wild ride.
I really disliked running the feeding tube machine and keeping everything clean and taking care of it. But I had to do it. She had to have feedings starting at 6 am and going every three hours until midnight. I know she took it out shortly before halloween because she was happy that she didn’t have to have the tube in her nose with her costume.
Jacee Harcourt told us about something called a Motility Study, so we got scheduled for that with Dr. Altaf. And then we went in for the appointment and Dr. Altaf didn’t want to do that, he wanted another barium swallow. So Dr. Altaf ordered at Fluoroscopy Esophagus Barium Swallow on November 3. Again, he said it looked fine. Still, we pressed. So he scheduled the Motility Study, which is also called a GI Esophageal Manometry Test. And all this time, Belinda was choking several times a day.
Here’s part of what I wrote in my journal about that day at Children’s:
Today was harder to be calm and cool and do my goals for this month. I did okay, considering the things that happened. First, we had to get up early to have Belinda at the hospital at 8:25. We got there in the nick of time, but then I got confused and thought we needed to take the E elevator to get to 9E. I had remembered how we took a special elevator to get to the right spot when she was in the hospital, and also how I took the L elevator to 9 once, and ended up in a weird surgical area and had to get help from a janitor getting out. So we were directed to E, but that ended up being Presbyterian hospital and was not right. So we finally got to 9E and it was the same old gastroenternology clinic we’ve always gone to. And we were 20 minutes late. They were cool though. We met the new doctor and he decided to have Belinda do another swallow study instead of the motility study. That was hard to hear because we’ve been waiting so long for this. But we did the swallow study right then. And then it showed the swallowing going a lot better. But I’m not convinced it’s really better because she’s still choking 2-3 times a day. I know they think it is rumination, but I don’t. I’m just tired of all of this. So now we don’t go back for another two months. At least she doesn’t have an NG tube any more! Can you imagine if we’d managed that this whole time and then we didn’t get the study? I do need to call Lincare and get rid of their equipment. I don’t want to pay to rent it any more.
Continued in Part 2
