Mrs. Trimmer, the doctor told me to tell you, nothing is wrong with your baby.Pediatric nurse over the phone
Do you hold your baby? Some babies just like to be held. Try holding her more. I will order the bloodwork but we won’t find anything. Babies cry, Mrs. Trimmer. That is what babies do.One of the “best” Pediatric GI doctors in the St. Louis area
My youngest daughter, Jenna was the first chitlen in our house to be diagnosed with food allergies and EoE. The experience of getting a diagnosis and treatment plan was beyond frustrating, demeaning, and exhausting. As a result, I was questioning if something was wrong with me, rather than my child since everyone seemed to be suggesting that exact thing. I am not sure I’ve had darker days than those in which I was so exhausted, trying to help my child only to be told her pain was in my head.
Finally, after a nurse practically yelled at me to stop bothering them, I got mad. Furious. And I knew it was time to find a care team that listened to me. A care team that did not make me question if my mom instincts were completely wrong. A care team that could see through my zombie-like state and recognize, I was a mom drowning, while holding a baby writhing in pain for at least 8 hours a day.
After a search of local pediatricians, I made a call and got in with a doctor new to that practice. Dr. S was her name, and she had an appointment available the next week.
I went into the appointment half-angry. I had been burned so many times before. At this point, I had already figured out Jenna’s peanut allergy, so it was proof there WAS at least one issue. But avoiding peanuts was not solving the problem. My child was lethargic all the time, pausing from play just to lay on the floor and writhe in pain, and just plain miserable 85% of the time.
By the time Dr. S introduced herself and asked what was going on during that first appointment, I just let it all out in one long rant. “This is Jenna, she has a peanut allergy. She has been angry since an infant and it is not getting better just worse. She screams, cries, and is so lethargic, it is heartbreaking. I understand she is acting fine now but I am swearing to you, this is not usually the case. She still screams and cries after every meal and bottle. I am not making this up”. Dr. S calmly replied, “I believe you. You are her mom, and I am here to listen to you”. I paused and my eyes swelled up with tears.
That was the beginning of discovering Jenna had more than just a peanut allergy. She had additional allergies as well as Eosinophilic Esophagitis (EoE). From that moment forward, I vowed to myself and my family, I wouldn’t settle for a care team less than awesome. My family deserves it and so does yours. Sadly, some doctors suck. Getting through medical school does not mean they are a great doctor as far as common sense and bedside manner are concerned.
When looking for a care team for your child, I suggest asking yourself the following questions:
- Do I feel comfortable discussing all issues with this doctor? Do I feel embarrassed or dumb to bring up things because they give me demeaning answers or treat me like I am exaggerating?
- How does my child feel in their office? Are they comfortable around the staff and doctor? Does the doctor include them in discussions about their care (if age appropriate)?
- How is the support team? Are the nurses, office managers, billing departments, and medical assistants personable and professional? Or are they constantly bad-mouthing one another? Do they all communicate efficiently? Will they be supportive? Are they sensitive to what my family is going through? Successfully navigating food allergies will require a partnership with your care team!
- Does our care team have adequate experience with my child’s medical issues? How many patients are in their care with the same diagnosis? This is REALLY important if you are treating EoE as many doctors are unfamiliar with the disease.
If any of the questions above are a hard, NOPE, it may be time to break up with your child’s doctor. Keep in mind: many specialists appointments take 30/60/90 days to get an appointment. Start calling around and making appointments immediately.
Dr. S along with the GI doctor she recommended has been a game-changer for my family. After the proper diagnosis and treatments, both of my girls are improving, living a better quality of life. I no longer question my mothering abilities after leaving an appointment. I hope when Dr. S retires, she will let me take her out for drinks. I am told that would be inappropriate now as my child is her patient. Who knew?!?
Have you had a bad experience with members of your child’s care team? Have you had a really great experience? Please let me know in the comments!