Sometimes, you have to stick up for your kid, even if it means burning bridges. We have had a few bridge fires throughout this special needs journey. The first one was probably with the infectious disease department at Children’s Hospital; I thought they were not taking Gracie seriously, they thought I was hysterical, it didn’t end well. Thankfully, we live in a city with two hospitals for children, so we had other options for Gracie’s care.
Next, there was the whole unpleasantness with Anchor Center. I will probably never forgive Anchor for the way it treated us. It’s too bad, too; before things went south, I had dreams of working there or even being the executive director someday. Now, I can’t even see their logo without feeling angry and hurt.
Today, the bridge with Gracie’s current GI specialist burned to a fiery crisp. Or at least, I assume it did. I would know for sure if the doctor had gotten back to me.
Gracie was supposed to have her endoscopy under anesthesia last week to determine whether the lesions on her small intestine had healed from three months of a gluten-free diet. The doctor wanted it scheduled at 2 p.m. because it was easier for him, completely disregarding my protests that it would be harder for Grace that way. I wrote a post about it. After writing that post, and after talking to a good friend who’s been on this path longer than us, I decided to bring my concerns to the doctor’s attention. I emailed his nurse the Thursday after our appointment, five days before her scheduled scope Tuesday afternoon. Despite having been quite responsive when I sent Gracie’s diagnostic information, I never heard back from the nurse about my question—no confirmation email, no note to say she would ask the doctor, nothing. Red flag!
Flames sparked under the bridge.
My email apprised the doctor of my concerns—I’ve never believed she has celiac disease, but think instead that she had an intestinal infection last August and September, and if it was an infection, it seems that the lesions could have healed on their own in 11 months. I should have also said that even if she does have celiac, three months is probably not enough time to heal her intestine, since she is known to heal very slowly. I did say, though, that since the doctor did not scope her immediately prior to beginning the GF diet, there was no way to know if the diet had helped her or if she had healed on her own, and that I did not want to subject her to anesthesia unnecessarily. I tried to be very politically neutral, knowing that the doctor’s ego could be inflamed by my questioning of his practices. Alas, the silence on his end has spoken volumes.
After sending that email, I thought more about how horrible it would be for my child to spend the entire day NPO (nothing per oral, a/k/a no food) before the procedure, and how she would not be able to control her behavior or her hunger. On Monday, 48 business hours after sending my email but approximately 24 hours before the scheduled procedure, I called the doctor’s office to reschedule, telling the receptionist, “I don’t care how long we have to wait, I just want the procedure to be first thing in the morning.” Turns out they had an opening the following week. Another red flag! While still on the phone, I told the receptionist that I had emailed my concerns to the doctor but he had not responded. She assured me that she saw the email on the top of his desk, and he would respond the following Monday when he returned to the office. I warned her that I would be forced to cancel the procedure again if he did not.
The flames under the bridge were starting to grow at this point.
I waited all day yesterday for a call or email from the doctor, but none came. That printed email on his desk is probably buried under a stack of files by now. He may have read it, or maybe not, but because he did not respond right away, I’m sure he never will.
In the meantime, Gracie has been—well, off, for lack of a better word. Her behavior is not as exemplary as usual, she’s not eating as well as usual, she threw up Sunday night (perhaps precipitated by my insistence that she eat her corn), she’s not sleeping as well as usual, she’s just not quite right. She doesn’t have a fever or any noticeable infections, but she has a giant pressure sore under her cast, so my mom-alarm is going off. I emailed her pediatrician for advice, and she said that I should get Gracie into ortho before next week (her follow-up was scheduled for Monday morning). Today, I called ortho and spoke to one of the PAs who knows Gracie well. I expressed my concerns, noting that it could just be paranoia, but the PA said that if I was worried we should check it out. Thank goodness for doctors who understand! No red flags there—what color do they use for all clear, or grateful? Green flags, maybe? Green flag! The PA set us up to go in tomorrow morning, right at the same time Grace was supposed to be going under anesthesia for her scope. I was not too sorry about the timing.
I called GI again to cancel the scope. The exasperated-sounding receptionist asked me why I was cancelling. I told her it was because Grace had another urgent medical matter, and also because the doctor had not addressed my concerns. She said she would write that it was for other medical issues. No one wants to hear from the concerned parent at that office, apparently! Because the receptionist did not convey my full message, I decided to email the doctor’s nurse again. I forwarded my previous email with a note that I had to cancel the scope because of other urgent medical issues, and I would wait to reschedule until the doctor addressed my concerns. Do you think she responded? Nope, crickets. Total black hole. Total red flag.
The flames have nearly engulfed the bridge now.
We have been through enough for me to know that the relationship with this doctor is irreparably broken now. He will not call, and his nurse will not email. Thank goodness it’s not a specialty we really need, like infectious disease. No, GI has done nothing for us at this point except make our lives harder. Certainly they have not helped.
The only problem is, we still don’t know for sure whether Grace has celiac disease. I don’t think she does, but I can’t be sure. Because of that, she has to remain gluten free. We can’t take the chance—being on a GF diet won’t hurt her if she does not have celiac, but it will hurt her to take her off the diet if she does. There’s no choice. We will do the GF thing for a while, possibly months or years, since we have no doctor to guide us now.
Sometimes, Mama’s got to burn the bridge. Sometimes, you have to tell doctors that you don’t agree with them. Sometimes, doctors are okay with that, and other times they don’t want to see you again. It’s the price we have to pay. Ain’t no one gonna hurt my girl, though! No one’s going to subject her to an unnecessary medical procedure. She goes through enough out of necessity. This Mama Bear—or pyromaniac, I guess, to keep with the burning thing—will fight to the end to keep her girl safe. I love that kid. She’s my baby and I won’t allow someone else to hurt her. Not even a doctor.
Why didn’t the dr do blood work for celiac? My daughters GI did a celiac blood test when concerned about it- no scopes or anything. It was negative so he crossed it off his list of concerns.
He did – it was negative. He said, though, that for younger children who may not have developed the blood antibodies yet, the scope is more accurate.