The Testing Continues

April 2011

Tylyn’s abdominal sonogram revealed no anomalies. The HIDA scan also was negative for gallbladder problems, leaving us clueless and Tylyn still suffering. Mid April we moved forward with the Endoscopy and the GI doctor in Rochester was now convinced that Tylyn had something going on.

Her blood work showed Eosinophilia (an increased number of Eosinophils in her peripheral blood). In fact her counts went from 9% to 11% to 14% to 20%.

He wanted to biopsy her esophagus, stomach and upper small intestine. Dan had planned on going to California so I accompanied Tylyn to the doctor’s for her procedure. Despite everything she had gone through she was amazingly positive and of course I snapped a few pictures to document the experience, including a picture that was in her chart showing the furrows in her Esophagus. The GI doctor gave us a preliminary diagnosis if EE.

It would be a couple of weeks before received the diagnosis. Eosinophiliac Esophagitis. Despite being ready for this, it took me over. I had been combing the internet for the past week trying to find information and had come up short but everything that I had researched prior to this point now started to fall into place.

Tylyn would now need to have a Colonoscopy done to look at the lower part of her small intestine and colon. The GI doctor was hoping to rule out Chrons and Celiac disease as well.

May 2011

I took the call from the GI doctor while I was at work. He informed me even though Tylyn’s colonoscopy had been textbook; the biopsies reveal her small intestine was ‘infiltrated’ with Eosinophils. I would receive a paper later on confirming the second diagnosis- Eosinophiliac Gastroenteritis. This would be shortly before what I would later on discover to be Eosinophiliac Awareness week.

She would be started on a course of Steroids for the Eosinophiliac Gastenteritis. I was not pleased with the GI’s decision to place her on Entrocourt (Budesonide Oral). I reluctantly agreed after hearing that they were hoping the steroid would knock her Eosinophil levels back to normal providing relief. He expressed that many patients respond to this treatment and in ideal circumstances she wouldn’t have to remain on it long. In addition he reassured me this particular steroid had minimal side effects because it was metabolized quickly. I was partially relieved that the Eosinophiliac Gastroenteritis would be brought under control, helping alleviate the discomfort of her chronic diarrhea.

I went to the pharmacy later that day to pick up the script. Due to wide limits of income, Tylyn still receives Child Health Plus. Price with insurance for a 30 day supply (90 pills) $0. Price if she didn’t have insurance- $1140. When I relayed that information to my family when I returned home she sullenly looked up from the movie she was watching and stated that she might need to change her career choice to guarantee she would always have insurance. This is a depressing thought for anyone, let alone a seventeen year old choosing a profession. This was not a name brand drug, merely a generic.

Working first hand at a pharmaceutical company I know the millions of dollars that it costs to develop a drug, bring it through clinical trials and the market. I am familiar with the steps of drug development. IND (Investigative New Drug), Phase I, II, III & IV Testing and NDA (New Drug Application).

In addition I have worked with the top of the line instruments; HPLC’s (high performance liquid chromatography), GC (gas chromatography), analytical balances, MS (mass spectrophotometers), and FTIR (Fourier transform Infared Spectroscopy) to name a few. I know the costs of columns, reagents and standards. My experience encompasses all these areas but I am completely disgusted over the FDA and federal regulations regarding these patents and release of these products. I can say with certainty the analysts and research scientists are not over compensated and place most of the blame on the pharmaceutical companies who are netting millions of dollars on product.

Alas I have gone off on a tangent. Time to refocus.

She was on the Entrocourt for only a week when she saw a marked increase in her symptoms. Diarrhea and abdominal pain increased significantly along with a new side effect: headaches. The latter was confirmed with the pharmacist as the most common side effect. I made a call to the doctor’s office the morning of my Grandmother’s funeral. The GI doctor was sympathetic in our loss but accounted for Tylyn’s change in symptoms to the latest upset in our family. Annoyed I expressed that it was not related to the funeral at all and proceeded to hang up and tell Tylyn she needed to take it in order to feel better.

The following week we visited a new allergist that the GI doctor wanted us to change to. Off Dan and Tylyn went. The time spent there explained that the Entrocourt could increase the diarrhea and abdominal pain she was having and the dose she was on was a lot but not enough to make a difference. He proposed putting her on Prednisone. His theory was that she was trying to put out a fire with a squirt gun and not a fire extinguisher. She needed to get rid of it once and for all and finally feel better.

Tylyn liked him because he was cute, not enough to win me over at this point. When she texted me the information he had told her I called the doctor. He posed his argument and I rebuttaled with hard data about steroid use, particularly Prednisone. He explained his point once again and said he thought it was a good thing Tylyn would be feeling better in 24-48 hours after starting the Predisone. A small time, he noted after suffering for years and possibly having both the Eosinophiliac Esophagitis and Gastroenteritis since birth. I said I wouldn’t tolerate long term use of two steroids. He agreed and said the Prednisone was only a short term use, two weeks, with a high dose at the beginning for seven days and a gradual wean.

Against my better judgment I agreed, though not before informing him that if she did not have an improvement she would be going and seeing the clinic in Cincinnati or Denver. He downplayed my threat but reassured me he knew Dr. Furuta and this was the best care she could receive in this area and ‘this wasn’t his first rodeo’. I will leave out my own colorful words here. He also decreased the Entrocourt at this point to one a pill per day instead of three.

Day 1- No change. Diarrhea, headaches, nausea, stomach pains.

Day 2- No change. Diarrhea, headaches, nausea, stomach pains.

Day 3- No change. Diarrhea, headaches, nausea, stomach pains.

Day 4- No change. Diarrhea, headaches, nausea, stomach pains.

Day 5- No change. Diarrhea, headaches, nausea, stomach pains, joint pain.

Day 6- No change. Diarrhea, headaches, nausea, stomach pains, joint pain.

At this point Tylyn and I headed Florida. I had booked a trip for just her and I back in April to get away from doctors, tests and the drama that seemed to follow us from week to week. So much for 2011 being better. I was dealing with a girl who was upset she left her prescription anti-diarrhea medication at home even though it provided little relief.

Spending time with Tylyn in Florida made me realize how much Ty used the bathroom. We had flown in on Friday and visited Ft. Lauderdale, Miami, The Everglades, The Keyes and were going to leave on Monday, Memorial Day. Sunday night as we laid in separate beds getting ready to fall asleep I listened as she complained about stomach pains and how bad she felt. Exhausted she concluded it was because she was now weaning off the steroids and therefore body wasn’t receiving as much of a dose.

Tylyn fell asleep while I laid awake thinking of the 1000mg of Tylenol she had donned to get her daily headache to go away. She wasn’t happy and I couldn’t fix it. I felt like a failure as parent and as we flew home on Monday and Tylyn visited the restroom during our three hour flight I realized I thought once we had a diagnosis it would change everything; the way she felt, how she was treated for the Eosinophiliac Esophagitis and Gastroenteritis and hopefully a change in lifestyle for her.

I was wrong.

June 2011

When we returned home I called the allergist and relayed that Tylyn was not feeling better but now was having a lot of joint pain. The message was relayed to the doctor who relayed back. ‘Why is she still on the prednisone?’ With irritation I replied, “Because she is only at day 10 and she is weaning off until day 14?” The nurse revealed that the doctor was booked for two weeks. If Tylyn was having problems, they suggested she could go to her PCP.

Infuriated I called the GI doctor. He patiently told me his thoughts of the course of action I should take. Wean her of the Prednisone and the Entrocourt as there was no change. I mentioned Denver and Dr. Furuta again. I also threatened to seek out a second opinion with Dr. Scagnelli that was still practicing. In fact I had already booked an appointment with him.

I was tired, exhausted and drained at being my daughter’s supporter, advocate and seemingly the only person who could look at the data objectively.

The GI surprised me and supported my decision to seek another opinion. He told me that because Eosinophiliac Esophagitis and Gastroenteritis was so rare, if this was his child he would take them to the Eosinophiliac Clinic in Cincinnati or Denver. He did not discourage me from seeing Dr. Scagnelli who had also treated this disease, he just suggested going to the best place due to its rarity. He also empathized with my frustration of empty promises by the allergist with no resolution.

I called Dan and discussed. After agreement I called both facilities. Cinncinati’s recording stated they worked on a volunteer basis and would return our call when they could. To date I have not heard from them, it has been three weeks.

Children’s Hospital (CH) in Denver called back that day. I talked in length to Kim, someone from the program. She was patient and understanding. She offered to pass my information onto the program coordinator, Joann.

Needless to say they have been true to their words. Kept deadlines, offer information and discuss their program. It took less than one week for Tylyn to be accepted, which included having all her records transferred from the five different doctors that had treated her over a three month period. 

Prior to her visit yesterday with the allergist yesterday she had been doing better since off the steroids. No joint pains, headaches are gone, weight gain subsided. The only problem abdominal pain is continues,as the diarrhea and fatigue.

But we made it miraculously through prom despite a rocky day prior. Good thing the boys baseball team won sectionals and they moved it. :) Now if we can only stay stable until our visit in Denver on October 27^th.

Above: Tylyn at Prom

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