I have been away for a long while. Not just from writing, but from my life itself. I tell people it is as if someone hit the pause button in my life. This week the play button was pressed and I am back. THANK GOD!!!!
Since January, my oldest daughter has been sick, and in the hospital for 8 weeks within the past 3 months. My family has been tested and tried for all it was worth. The uncertainly of her health was exasperating, stressful and overwhelming. It all started with a flu. It seemed typical enough, but after 5 days of vomiting I had to take her in to the hospital, and that is where the drama began.
She was initially treated for dehydration, and then as the pain worsened she had her appendix removed. The appendix was not the problem, and so the vomiting and pain continued. I felt confident that the doctors would figure out her case, considering that Children's Hospital of Pittsburgh(CHP) is ranked in the top ten. I could not have been more wrong. Never in my life had I witnessed such incompetence. I am not referring to all her doctors, there were some amazing people that helped my daughter recover. Oddly, they were not the doctors assigned to her case, they were acting as advocates trying to help my daughter get better.
The gastroenterology department was awful. Every time I complained, I was told that what I was experiencing in dissatisfaction was "the nature of GI". Am I to assume that miscommunication, egoic behavior and poor follow up are all natural occurrences in GI departments? According to the staff at CHP, that is exactly the "nature of GI". On several occasions, testing and medications were started without ever mentioning to us what the tests or medications were for. They never gave us a clear diagnosis. The best they could do was send us to a psychiatrist who told us our daughter was doing this on purpose and was probably a bulimic. I am a family nurse practitioner, and never in my life have I heard of "catching" bulimia after a bout with influenza. According to the psychiatrist, Dr. Benhayon, that is exactly what her problem was. She was being rewarded with attention for her vomiting, so she was voluntarily behaving this way in order to keep herself in the hospital, and get more attention. He even told this to my daughter, who became enraged at his suggestion. All she wanted was to get better and go back to school. According to specialists at CHP, my daughter wanted a central line and a nasal jejunal (NJ) feeding tube as a way of attention seeking. Everything they said could not have been further from the truth.
Obviously at this point, I was not at all pleased by her doctors. The were contemptuous, egoic, self idolizing, incompetent doctors, who would rather misdiagnose than admit they had no clue what was wrong with her. They would rather over medicate, with the appearance of helping, when in fact they were doing harm. How does that fit into the Hippocratic oath? IT DOES NOT. The only positive thing Dr. David Keljo, her GI doctor at CHP, did was to refer me to Dr. Carlo De Lorenzo at Nationwide Children's Hospital in Columbus, Ohio. This referral came with a caveat, Dr. De Lorenzo has a 4 to 6 month waiting list for motility studies, which is what her brilliant doctors at CHP (note the sarcasm) thought she needed. They were comfortable keeping her on tube feedings for that time frame until she could be seen. If it were not for the help a very special person, we would have been left to deal with an NJ tube to feed our daughter for 4 to 6 months, before we could even figure out what was wrong with her. This amazing doctor made a simple phone call for us, (he was not in the GI department), and got us an appointment in 3 days! I cannot even begin to tell you how this event changed everything and led to a speedy recovery. I thank God that this doctor had my daughter's best interest at heart and not his ego.
Once arriving in Columbus, we saw Dr. Carlo De Lorenzo right away. Within 5 minutes, he had a diagnosis. He was certain, and said nothing else could be the cause at this point. Granted, he had all the testing that CHP had done to look at prior to seeing us, but he really did not need to look at them to diagnose her. He was the first doctor to ask my daughter to drink something so he could visual what happens to make her vomit. She had rumination syndrome: not gastroparesis, not bulimia and not some motility disorder that the doctors at CHP labeled her as having. He asked us if anyone had every brought up the diagnosis of rumination in the course of our hospitalizations. To no ones surprise the answer was, "no", I had never heard that word before.
There is no physiological process that will make someone vomit within seconds of eating, other than rumination syndrome. Dr. Carlo De Lorenzo was certain, with out any doubt, that this was her problem. She had vomited so much from influenza, and then from an appendectomy, that she had developed a tic that made her vomit. He took her off all her medications, except prevacid (to protect her throat from the acids when she vomits). He recommended an inpatient treatment program in order to cure her of ruminating. The only inpatient treatment program for rumination is at Nationwide Children's Hospital. THE ONLY ONE. This meant another wait to get into the program. We had to wait 8 weeks for her to admitted and treated.
The most disturbing part of my daughter's care was: no one at CHP brought up this diagnosis, they over medicated her, and never made any attempts at follow up. The only supposed help we were directed to, was behavioral health and the psychiatrist, Dr. Benhayon, who told us our daughter was bulimic and this was all in "her head". He suggested celexa for abdominal pain and a poor attempt at hypnosis. This is what pediatric psychiatry at CHP had to offer us. If we did not take the celexa, there was simply nothing they could do. They could not even offer us a female psychiatrist. The one female they offered, would not see her unless she took celexa or some other form of psychiatric drug.
In my professional and personal opinion, the care we received at CHP was the worst possible. Their only comments were: "this is the nature of GI" and "unless she takes these drugs there is nothing we can do". How is it possible for a highly ranked facility such as CHP to allow this kind of care to happen? Mysteriously, Dr. De Lorenzo had worked at CHP in the past, so it is difficult to imagine that the doctors at CHP had not heard of rumination. Believe me, it is something I wonder about all the time.
I am not writing this diatribe just to denigrate CHP, Dr. Keljo and Dr. Benhayon. I am writing it with hopes that it may help someone, when and if they google the words: gastroparesis or rumination. I was told that some children come into the inpatient treatment program at Nationwide, after being on TPN or tube feeds for over a year. These children suffer over a year or more because of misdiagnosis. The treatment for rumination is not rocket science. It is simply a program that focuses 24 hours a day for 2 weeks, on swallowing food and keeping it down. They learn simple techniques that retrain the body to stop vomiting. My daughter suffered much longer than she needed to because or poor medical care. I hope that someone might be helped by this story and find their way to better treatment.
Rumination Syndrome is not voluntary. The disorder has also commonly been attributed to a bout of illness, a period of stress in the individuals recent past, and to changes in medication. The overall process of rumination is involuntary. My daughter is now doing well and has returned to school, ballet lessons, and playing the piano. For months, she thought she was dying and that all doctors were awful. Her faith in good people and doctors has been restored, because of the wonderful staff at Nationwide Children's Hospital. Someday she will take this experience, and use it to make her a better doctor, nurse, or whatever she wants to become.
I have learned through out this process to always trust your instinct. Do not believe everything a doctor says the first time around. GET A SECOND OPINION! Unfortunately, I learned that nice patients and nice parents get ignored. Unless you speak up, make yourself heard, and insist they communicate with you: you will be ignored, and you or your family member will suffer. The saying, "the squeaky wheel gets the grease",is absolute truth. Thank God I started to squeak.
This is great reference material, and was written by the doctors who cared for my daughter.
Have you ever had a similar experience in a hospital or with doctors who don't really listen to what you have to say?