My cell phone rang loudly in my purse as I was waiting for a test to determine if there was something wrong. The calcium in my blood was going up, a sign that perhaps the small glands on top of the thyroid, called parathyroids, might not have functioned right.
Everyone in the waiting room looked at me disapprovingly. Doesn’t she know to read?
“NO Cell Phones.” A big red sign clearly stated right in front of me. I felt ignorant. I was ignorant!
I stepped out of the waiting room and looked at the number calling me. It was the girld’s school. I answered because why would the school call at 11:00 A.M.?
“This is the Nurse, Natalie is in my office, she is throwing up and needs to go home.”
I drove quickly and grabbed my pale, half-fainted daughter. She was petite, a gymnast, diver and swimmer, an active, happy 12-year old. Why was she suddenly throwing up?
“Did you eat something?”
She shook her head,’ No.”
The next day I kept her from school and because the “bug” wasn’t going away and she was dehydrated, I took her to the E.R of our local Hospital, Abington.
She was admitted, but the doctors didn’t know why was she having this odd problem, which was occurring suddenly, as one was talking to her. She clearly had no will of her own or saying in what was happening.
Now she had a slight fever and abdominal pain and after a few days of running irrelevant tests it was decided her appendics might be the problem.
After the appendectomy she stopped throwing up and two days after the surgery we went home happy she was going to be fine in time for her 13th birthday and Christmas.
A week into our new-found bliss, the nightmare started again, even more violent.
I took her to Children’s Hospital in Philadelphia.
Puzzled looks. She was again dehydrated, pale, weak…
She was admitted in the hospital, first in the Adolescents Department, but soon it was decided she had a gastro intestinal problem and was transferred. Tests and more tests. She was given enormous quantities of acid blockers and other medications meant to make her stop and “keep” the food.
I called my clients, cancelled all appointments and slept on a chair by her bed. She was loosing wait so fast, the doctor informed me if something was not happening soon they will have to put her on a feeding tube. But nothing was getting better and for days I watched my child unable to keep food and disappearing to 86 pounds!
The endoscopy showed she was healthy. All tests showed she was fine. She looked like a ghost and loosing more and more wait. I feared she’d die!
One afternoon, I had to leave my post by her bed to go to my office, as rent was due. I asked Kevin to replace me at the post by her bed, for a few hours.
I came back as fast as I could.
“Did anything happen? Did any doctor visit?”
“Yes, a team of psychiatrists.” He announced. “They asked if we had marital problems in our family and I told them yes.”
Now they wanted to see Natalie and evaluate her psych. Since the tests showed she was in perfect physical health, there was one answer: It was in her head! Our marital problems were traumatizing her…
The possibility that perhaps the tests weren’t the right tests never entered the doctors’ minds, especially that the father confirmed we had problems in our family and now, the poor child, subconsciously was vomiting because of us!
The team of three therapists and a psychiatrists interrogated her, as she reported to me, for over an hour and told her she, Natalie, “trained” her throat to reject the food, but with a lot of work, they will help her learn to eat again.
Natalie had always been precautious, outspoken and as young as she was, the absurdity of the diagnisis, made her walk out of the meeting.
Oh, now this was even worse. The patient wasn’t cooperating and her mother, me, was totally crazy too and rejecting what was now a done diagnosis of a psychiatric condition which much later, I learned it was called conversion disorder. In all fairness to the psychiatrist, now I know that a diagnosis of a mental disorder was made after ruling out any medical conditions. So, it was in fact the mistake of the medical doctors who told the psychiatrist Natalie was physically healthy. I wished we, especially Natalie, knew the way people are diagnosed then, because that incident triggered a life-long mistrust of therapists in my daughter. I could not blame her, I could only wish she would accept there are good therapists around and not all medical doctors misdiagnose. Only an exceptional doctor has the confidence to admit not knowing everything and always being opened to learning more. Isn’t this how new discoveries continue to be made, isn’t this the essence of progress in science?
Meanwhile, Natalie continued to lose wait and the tube was scheduled to be inserted in a couple of days if some miracle didn’t happen.
Angry and desperate, I checked her out of Children’s Hospital in Philadelphia and took her at Saint Christopher’s, the other large children’s hospital in the city.
The new doctor ordered only an x-ray of her abdomen and looked at her: pale, thin, ready to faint.
“Your daughter has a severe intestinal bacterial infection and because she was treated intensely with acid blockers it got worse. Acid kills bacteria and because acid was blocked this aggravated the condition.
“But she had an endoscopy.” I protested. “They took samples and they were all negative!”
“The infection was in her small bowel, where the endoscope probably didn’t reach. She needed Flagyl, a strong antibiotic and also Nystatin, which was an antifungal. It would prevent fungal infections because she was to take an antibiotic.
Suddenly I wasn’t crazy, I was just the grateful mother of a very sick child! No long explanations, no “looks.”
After less than a week, Natalie was back to her own happy self and went back to school. She was eating normally and surprise, the throat which she so skilfully trained to not accept food, was accepting it again!
Gratitude would be an understatement. My child was not going to die, she was not crazy, I wasn’t crazy. What a relief.
But the entire trauma of being in and out of hospitals for three months, of being doubted by so many reputable doctors and my child traumatized by the very people, the therapists, who were supposed to help her, took a toll on both of us. It had been a life-changing experience.
I had insomnia and obsessed with the whole nightmare because deep in my heart I believed if there would have been flexibility in the doctors’ thinking, they would have concluded what Dr. Blecker at St. Christopher concluded in 15 minutes by looking at an abdominal x-ray.
The root of the problem, I thought, was at Abington Hospital when suddenly, after her appendectomy, she felt fine for a few days… why? Why did she feel better and then the problem attacked her again with a vengeance.
In the middle of the night, I had a revelation:
Wasn’t it routine to give patients a strong dose of antibiotic before surgeries, to prevent possible infections following the procedure? I bet, I told myself, she was given a strong antibiotic before her surgery and when the antibiotic warn off and the symptoms of infection came back and she started throwing up again.
This was a theory. I needed to prove it to myself I was right.
With that thought in mind, I took the elevator to the basement of Abington Hospital, to the hospital file room. I asked the clerk. I wanted a list of all the medications Natalie was given while in their care. I waited, and waited and she finally produced a printed list. No antibiotics listed on it.
“Are you sure this is the complete list?” I insisted.
She looked at me with the same look as most doctors: “Crazy, pushy, no good!”
I didn’t even care they thought I was crazy, I was getting used!
“That’s all the doctor ordered for your daughter!”
“Are you sure? I think she was given an antibiotic before her surgery. Isn’t it routine before surgeries?”
I had a point… she stopped arguing and the look of “she is crazy” disappeared.
“Well… there is only one other way to know for sure, if we go to the hospital pharmacy and look up their list. It almost NEVER happens, everything the doctor orders goes on this chart, but… may be because it was a one-time shot the antibiotic wasn’t written in her chart.”
The clerk and I went to the hospital’s pharmacy and she asked to see all the medications ordered for Natalie while in the hospital.
We went down the list… and bingo!
Before the surgery she was given a strong dose of… Flagyl!
That’s all I needed to know to stop feeling crazy.
I never sued the hospitals which almost killed my child and implied we were both mentally ill, but because I had a “thing” for justice and sometimes it may have looked like craziness, but it wasn’t, at least in my heart, it’s a matter of principle. I needed to know we were not crazy!
The lessons we learned were to ALWAYS trust our gut, in an abstract way, certainly! Also to have good health insurance which would allow a second opinion because to stay alive is not a luxury, the alternative is… death!
And finally, after all. that’s why it is called the practice of medicine, it’s not a science… or is it?