Lee Aase (@leeaase) published a blog post · February 23rd, 2010
Hayley's POTS Story: Getting Answers at Mayo Clinic
Editor's Note: The following was written by Christine Lairmore of Lake Arrowhead, California.
When our daughter, Hayley, turned 14 on March 8, 2009, we took her to Disneyland to celebrate. After a day full of riding rides and eating junk food, she woke up vomiting and kept vomiting all night long and all the next day. Our previously healthy daughter never stopped vomiting after that day, sometimes vomiting up to 12 times daily. Severe abdominal pain followed about a week later. I started by taking her to her regular pediatrician, who thought it was a flu and advised minimal eating, increase fluids, etc… just wait it out. It never got any better.
Watching our daughter suffering and not getting better, we took her to our local ER, fearing dehydration or something more serious. They ran some tests, suspecting food allergies (mainly Celiac Disease), did some x-rays of her abdomen, and ultimately sent us home with a prescription for Zantac. Days later, the blood test came back positive for Celiac Disease. We promptly put her on a gluten free diet, but there was no improvement to her condition.
Next we sought help through a G.I. specialist at Loma Linda Medical Center. He at first thought she was just constipated and prescribed a treatment plan for that. When she continued to worsen over the next week, he then performed an endoscopy – which showed mild gastritis and duodenitis and, more importantly, it ruled out Celiac disease. However, this doctor kept saying she was fine, nothing was wrong, and there was no more testing or medicine he could do. I told him her pain was worsening, she was still vomiting 8-10 times daily, she doubles over from her abdominal pain, she complains of dizziness, begs and cries for help, and I am at my wits end. They prescribe Miralax for constipation, which gives her bowel accidents she can’t control, and at age 14 she has to wear a diaper during long car rides. I have to literally beg the doctor, against his wishes, to perform a colonoscopy because she is still in so much pain and I fear we are missing something important. The doctor still has no answers and continues to say that the pain is “all in her head.”
With the colonoscopy, they find there are spasms throughout the colon – consistent with lymphoid nodular hyperplasia. The doctor himself never calls me with the results. I waited 10 days and finally called and got the nurse to tell me the results. She says the report rules out microscopic inflammatory bowel disease, the colon appears normal, and that my daughter needs a therapist for counseling. That was the last contact I had with that doctor.
Hayley is still vomiting up to 12 times daily, with the average being 10 times every day. She can no longer attend school, she cries all night laying in bed, and begs me to help her. As a mother, this is an unbearable situation to be in and I don’t know how to help her. I am trying to get medical help, but so far all of the doctors are letting us down by saying there is nothing wrong and it’s “all in her head.”
I will not give up until I find someone who can help. Next, I try a different medical center farther away from our home, but more renowned – Children’s Hospital Orange County (CHOC) – and make an appointment with a pediatric gastroenterologist. While waiting for that appointment, Hayley gets so bad that I have to take her again to the ER – but this time I drive the 1 hour to the CHOC ER. They don’t have any answers, but they finally prescribe some medicine for the pain – Tylenol with codeine (something the previous doctors would not do). Also, they move up her appointment with the G.I. doctor by 3 weeks so she will not have to suffer so long.
Before the G.I. visit, once more I take Hayley to the local ER because of the pain. They tell me her blood pressure was different between standing and laying down and they called this orthostatic blood pressure. However, when I asked what this was (is it dangerous?) they said it was probably just because she was dehydrated. Later, her blood work showed that she was not dehydrated. Like always, I kept all of her records in a notebook and wrote down everything the doctors said or did. Finally the CHOC G.I. doctor appointment arrived. When they checked Hayley’s blood pressure, it was 60/40. They checked it 4 times in a row and seemed very alarmed that is was so low, yet they did nothing to further investigate it. The CHOC G.I. doctor investigated many G.I. possibilities but could not find a diagnosis. We also checked Hayley’s blood sugar for days to rule out diabetes. However, after extensive blood tests, etc. – the doctor had no diagnosis.
Next, things got a whole lot worse. Hayley threw up for 2 days straight without eating anything. She vomited mostly liquid greenish bile, when I saw her violently vomit a large amount of matter which looked like a formed bowel movement. I was so worried that I again took her back to the CHOC ER, and this time they finally admitted her into the hospital. She had what seemed like every test and saw what seemed like every doctor over the next 3 days and nights. She was put on anti-nausea medicine, same as she was taking at home, but much stronger, so she stopped vomiting. That was an improvement, but it did not address the cause of the vomiting.
The G.I. doctor then came in and, before he even examined Hayley, said to me that “You will never get a diagnosis for her. You’ve taken her to too many doctors, gotten too many tests/procedures, and had too many opinions.” He went on to say that the likelihood of getting a diagnosis went down with each new doctor we saw and what Hayley needed was therapy. He spent 5 whole minutes with her. I told him to leave – he was done “treating” my daughter. As for the other testing – her MRI, barium swallow, barium enema, psych test, 5 minute neurological consult, blood work, and rheumatology panels were all normal. She was put on Zofran and an appetite stimulant and sent home. Her abdominal pain never stopped (nor was it ever explained by any of the doctors at the hospital) and her vomiting resumed within 1 week after returning home.
End of the Line
Next on my list of places to try was Children’s Hospital Los Angeles (CHLA), which is about a 1-1/2 hour drive from my home. Hayley saw another pediatric gastroenterologist who suggested a pain clinic and therapist consult. The doctor at the pain clinic said they could not help her because she was “functional” and we lived too far away. Again we were told to get therapy to deal with my daughter’s “obvious psychological issues.” By this time, I had found some information about POTS on the internet (after looking up orthostatic blood pressure) and asked the pain clinic doctor what he thought about this possible condition. He said it was basically not a real diagnosis and that it had no real scientific data or research to back it up. He was extremely dismissive when I told him I had read about people who sounded a lot like my daughter. He felt my daughter was making herself sick, for whatever reason, and needed therapy. Keep in mind that he met her for less than 10 minutes and never examined her before making his astounding diagnosis – he only reviewed all of my old doctor’s notes, tests, etc. This truly was the end of the line as I felt there was nowhere else to go.
A YouTube Video
So, one night after 1:00am, I can’t sleep, as usual, thoughts of my daughter rolling in my brain, I was on the internet. I was researching symptoms – Google searching orthostatic blood pressure, vomiting without obvious causes, abdominal pain, etc. Somehow, I came across a YouTube video of a young teenaged girl talking about having all of the same symptoms as my daughter. Now you have to realize how shocking this was. I had been doing internet searches for months, so had my husband, but to no avail. I guess that I was just never going to give up! So I kept re-wording the way I put the symptoms in, re-ordering them, etc. And I finally saw a blog about a girl talking about her symptoms, which led me to the YouTube video, which I watched, and she was a patient of Dr. Fischer’s. Well, it was like someone had told me I just won the lottery. Here was a teenaged girl who sounded exactly like my daughter getting help from this doctor, who was researching this syndrome, which seemed treatable with medicine, diet, exercise, etc. – I nearly screamed!
The next morning, as early as I could, I called the phone number on the website and Dr. Fischer’s secretary answered and I told her my daughter’s brief history. When she said these words to me “yes, it sounds like your daughter has POTS, and it sounds like we can definitely help her here,” I broke into tears. I can’t tell you, after the 6 months of living hell we’d been through, she was like an angel to me. She told me to send her a brief history and that they would triage my daughter and call me with an appointment! I couldn’t believe my daughter might actually be getting to see a Mayo Clinic doctor! We went from “nothing is wrong with your daughter” to seeing a Mayo Clinic doctor in a heartbeat… I was speechless. I said thank you, hung up the phone, and got right to work on the brief history write-up.
When I had finished and faxed it in, they called me back pretty quickly. I was so nervous and skeptical at this point thinking maybe that they would say she didn’t have POTS or need to be seen, but they said yes, she did sound like she had POTS and that we were getting an appointment. We were thrilled! The only hard part was waiting the 3 months for the appointment, as Hayley had suffered so much and continued to suffer during this time. I emailed Dr. Fischer to see if we could get the appointment moved up, but he said that would not be possible and that we should utilize or local doctor in the meantime. As mentioned before, we have had no help or success with our local help. These were the longest 3 months of our lives.
Hayley at Mayo Clinic
When we finally got the Mayo Clinic, we were blown away. No more doctors who see you for 5 minutes then say “there is nothing wrong with your daughter.” We were scheduled to see 6-7 specialists over 5 days with a host of tests in between. Basically, Monday through Friday, 8am till 4pm, we were busy. Each doctor did his/her own full exam, as least 45 minutes worth, and was extremely thorough. They stayed in the room and talked with us and answered all of our questions, never made us feel rushed or stupid, and made us feel like our daughter would get better. Each specialist did his/her own exam based on his/her own field of expertise, not based on reviewing some other doctor’s notes or reading some other doctor’s opinion.
I was just amazed at the thoroughness and level of professionalism displayed by every single member of the Mayo Clinic team. I’m not just talking about the doctors, but the nurses, aides, techs, receptionists, everyone we came into contact with involving our daughter’s healthcare. After having had such a horrible experience for the previous 9 months, it was such a pleasant dichotomy to finally have happy, positive people who definitely believe in you and know your child is ill and are ready and eager to help. As a frustrated, tired, and frazzled parent on the verge of a nervous breakdown, I can’t convey enough appreciation and gratitude to the remarkable staff at the Mayo Clinic, whom I will highly recommend to anyone and everyone I know in the future. I especially commend Dr. Fischer and his staff, he is the best doctor I have ever had the pleasure of meeting and has a great bedside manner for working with adolescents and their families.
In closing, it has been 7 weeks since our return from the Mayo Clinic. With the regimen of medication, diet, and exercise prescribed by Dr. Fischer (and others), Hayley’s recovery has been nothing short of miraculous. Her vomiting quickly tapered down and has finally gone away. Her abdominal pain has slowly subsided and is now a mild inconvenience, rather than a debilitating condition, which makes her daily life and sleeping entirely manageable. And, most importantly, she has gained 9 pounds (she weighed about 74 pounds when we first arrived at the Mayo Clinic). And finally, just last week, Hayley has returned to high school on a part-time basis. It’s a start, and we hope to have her back full time within the next several weeks.
Editor's Note: Mrs. Lairmore submitted this story in January. Last week her husband, Robert, followed up with a note saying, "By the way, Hayley just started back to school full-time this week and all is going well. Her recovery continues to amaze both me and her mother."