And the duck goes QUACK

Today was the first time I have cried in a while about Tylyn.

I realize that doctors are human and their errors are sometimes honest mistakes, even if those mistakes cost people their lives. Tylyn’s condition is not in a critical sense of life threatening as a heart attack or cancer might be, but the complete lack of compassion and acute care is disheartening.

Perhaps it is because of the road blocks her current doctors have put up. Inept at best I can not even stand to neither hear their voice nor their name.

It started with a call to Dr. Nightmare Allergist office to get Ty’s blood results. Normal. But wait- no Eosinophil count as there was no Diff. To make a long story short- why am I concerned with her count? The icing on the cake was when she relayed the doctor’s message verbatim about my referral inquiry that went along these lines:

Patient’s mother has been informed numerous times before that a referral would not be done until the patient has been reevaluated by our facility also will need to discuss with GI doctor about referral.

In addition he kindly added he was coordinating her care through Colorado with facilities and staff that he personally knew.

And might I add here- who gives a shit?

Perhaps it was teh nurse's icy tone after I said that I didn’t want to talk to Dr. Nightmare anymore. Perhaps she became annoyed about my concern of Ty’s Eosinophil levels remaining elevated for 6 months which can put strain on her heart and other organs.  

Perhaps my irritation continued with the inability to see the new GI doctor sooner. Though Ty’s stools are being questioned, it is considered a second opinion which does not allow prioritizing.

Makes you wonder how many people die waiting to get a second opinion.

Lastly, when I found out the real culprit for ordering the CBC without the diff, (although the hospital lab staff assured us the req did mean differential), would be the PCP, they regretfully informed me most likely the insurance wouldn’t cover a retest. This was due to her having two normal blood results back to back.

Remember the first one they didn’t do right either.

Morons would be a strong understatement for Dr. Nightmare, Dr. G and her PCP.

Sadness does not cover my emotion. If I had to describe it perfectly it would be a mixture of: despair, hopelessness and fatigue.

I look forward to closing my business and letting Daniel take over. How can anyone have the strength to interact with anyone after dealing with this on a weekly and sometimes daily basis?

I’m trying to stay positive but in the midst of the roof leaking because of the ex-husband, the crappy contractors that won’t show up or return a call (and when they do they tell me September) and my flipping car needing service constantly, I have little patience for doing teh grunt work of my daughter's health care.

It seems this is common though. A client yesterday told Dan her daughter was diagnosed with Fibromyalgia but that was only after fighting with doctors for four years while they had her do physical therapy. Her daughter was still angry about the doctor's ignorance. She is the same age as Tylyn.

I am currently taking a class for a new medical degree and am sickened by the description of the healthcare reform that promises a better system for the patient. One that allows easier referrals and electronic healthcare records that can be accessed instantly.

Our current healthcare system is fill with doctors such as these that are overworked, understaffed who have atrocious amounts of student loans and insurance costs and no time to provide adequate care that is outside what we can all find on google. What does this result in? Demanding to see a patient so they can write a referral. Perhaps it is their egotistical, self centeredness that makes the ability to see past their own opinion unattainable.

I’m not sure if he wants me to pay some more money one more time. My daughter has been to his office twice since he promised her a miracle cure. I’ve asked since June 1^st for a referral. I’m beginning to grow leery of NJH & CH if Dr. Nightmare represents the doctor’s there.

I think I need to do more research before a let another “duck” set back my daughter’s progess. But then again, currently we have no where to go but up.

Loading up my arsenal...

I am a full advocate for representing oneself. In this statement I lump in educating yourself whether it is looking into buying a car or house, taking out a loan, changing careers or your health.

What I am not cool with is playing secretary to businesses that are involved in my child’s acute care or being the most active in her treatment.

So, one can assume I am going somewhere with this.

A phone call to the insurance company today revealed no movement on Dr. Nightmare’s end or the GI doctor. Calling the GI doctor revealed they have no records in their file of the faxes I have sent over. I am to check in tomorrow and see if the secretary managed to locate them.

Unfortunately I had to give her an update; Tylyn has not been feeling well. It seems the Pentasa has provided no relief. In fact yesterday was very bad for her, seven BM which were the consistency of sand or ‘cornmeal’ in her words. She had to sit down at work because she was so sick, the pain very intense, the nausea and pain unbearable.

A quick Google search reveal little on the BM consistency. A few hits though, linked to Celiac. The tests have been negative (4 times in total). I wonder if the allergist will test for gluten on the patch test.

The IBD results are back. Drum roll……. Negative.

I’m shocked.

If you believe that I have failed to convey the sarcasm that drips from the words.  Still, another test that has been done chalking Tylyn’s total of 22 negative tests to include the following list:

Celiac’s (x4)

Crohn’s (x3)

IBS

IBD

RA

Leukemia

Barium Enema

Barium Swallow

HIDA

Ultrasound

CT

IgE Milk RAST

SPT for food allergies

Anti-Islet Ab test

C-Diff

O&P

and countless other’s I have forgotten

Hey guys- how about some patch food intolerance testing?

Grrrr.

I have ordered two books to try and alleviate Tylyn’s symptoms. Although she has been ruled out for Crohn’s/ Colitis , IBS  and Celiac’s  I think she may benefit from trying a few meal preps targeted to eliminating preservatives, gluten and other possible triggers from her diet.

The books I have researched and chose to add to our list sport a lot of valuable information from patients that were not responding to pharmaceutical medications. In some cases the patients have full relief, while most have partial relief. I know in my internet travels I have seen reoccurring cross references to controlling all these diseases, including EE & EGE with diet. Why not? We have got to start somewhere as Pentasa is prescribed to UC and Crohn’s patients anyway with the most common side effects being abdominal cramping, nausea and diarrhea. For once I would love to see it list green stools.

They won’t arrive from Amazon until next week, by then the first phase of patch testing will be complete. If I can reduce Tylyn’s symptom’s by 50% through diet, that would be wonderful!

Here are the books I am going to try:

Breaking the Viscous Cycle

Healing Foods: Cooking for Celiacs, Colitis & IBS 

I am interested to see how her data will reflect diet changes and I feel better knowing that there is one more stone turned over in trying to make her well.

If anyone would like to check out how a medicine rates prior to using it check out Ask a Patient.   I was given this as a tip from a coworker and friend and have found it immensely helpful including my research about Singulair.

Educate yourself, be an advocate for you and your family and take charge of your life.

Bad paperwork

Tylyn decided to watch My Sister’s Keeper last night. She has already seen the movie and why she would want to see it again is beyond me. For those of you who haven’t see the movie, stop reading right now, for those of you who have, feel free to continue.

We were watching the end and Tylyn asked me why the daughter was consoling Camren Diaz. Her point was why shouldn’t be the other way around.

As I watched it for my second time, tears streaming down my face, I could not come up with an answer. It was a valid point but I could not break away from the mother’s pain of her sick child. To those of us who have children it is completely understandable, how hard it is to give up and let go, not in just times of death but in difficult times of sickness as well.

Always wise to his words Dan answered that the daughter got it, she knew she was going to die and had accepted it. It was the mother that was still in denial and fighting. His response made me cry even harder.

Earlier that night we had picked up Tylyn and gone for ice cream. Driving around we were talking about random things and the subject turned to her one day having children. I tentatively brought up a subject I wanted to discuss in Denver.

“Ty, I know you really want to have children someday, but what if you find out your child will have what you have? “

It isn’t a guarantee or even a fact. I just know her grandmother had GERDs and I have had problems with my throat and allergies that is worse than my mom and Tylyn is worse than me so……. Will her child be worse than her? A chilling question but a valid one I feel especially since many of the articles relay the information that GERDs is similar to EE and often is a misdiagnosis.

Silence came from the back of the car.

After a long pause she replied, “I’ll adopt. I don’t want anyone to have what I have.”

That is a very mature answer for 17 and humbling also. She obviously doesn’t know the costs of adoption or if there is even enough data to prove or disapprove whether this is hereditary although the link is strongly suggestive.

She does understand now that it’s not normal to be sick after eating meals and the average person doesn’t have pain constantly in their abdomen.

Today we started the Zyrtec. The Singulair trial yesterday was unsuccessful as she is itching profusely especially on her face and around her mouth. Because she is eating the same things as always I don’t think the increased allergies are either food or environmental as she was even experiencing it outside our home at lunch.

A quick internet search revealed the FDA updated safety labels on Singulair to include warnings about this suspicious behavior. Symptoms on the warning label include: aggressive behavior, hostility, hallucinations, night-terrors, tremors, irritability, anxiety, depression and even suicide.
Not something I want her on anyway it sounds.

Also today I discovered a letter from the insurance company requesting additional information about Tylyn from her GI & Allergist. I faxed over the requests and also sent them back to her PCP. In the letter both Dr. Fleisher and Dr. Furuta’s names are spelled wrong. Courtesy of the PCP to which the insurance company kindly requested the paperwork be corrected and resubmitted.

I’m hoping she is relaxing today, swimming in the pool, enjoying her night off from work. Perhaps I should join her and not think about allergies or anything else again until tomorrow.

Reality: The Non-Fiction Side of Eosinophilic Esophagitis

Today is Friday. Thank goodness my daily job as a Method Transfer Analyst at a pharmaceutical company is over for two days while I shoot a wedding and edit pictures.

As much as I love photography, I have pulled back a bit. I’ve cancelled all my promo work. I told Dan last night I couldn’t talk about shooting a wedding on November 5^th because it is two hours away and I won’t return home from Denver until the 3^rd. I’m not putting my life on hold because of Eosinophilic Esophagitis or Gastroenteritis. I’m reprioritizing.

Okay, whom am I kidding?

The fact is no different than when we had 9/11 or Hurricane Katrina- I am addicted in formation. My current read? Gastrointestinal Endoscopy Clinics of North America edited by Dr. Glenn Furuta, Tylyn’s soon to be doctor in Colorado. I even dreamed last night I was shooting a wedding and was describing to the guests about the disease and he was there listening. Dr. Furuta stood up and explained it had all been a misunderstanding and he would make Tylyn better. I woke up feeling sad that it wasn’t true. It was here. Forever.

I’ve been contemplating going back to school in the spring after my company closes. Something I had considered before for retraining, but set aside because my passion is definitely photography. I now think about the possibilities. The research I could do, the things I could discover, the help I could lend.

Then I realize I’m obsessing a bit like the man in Love and Other Drugs movie. Am I trying to make Tylyn better to make myself feel better? Do I want a simply uncomplicated life again? I don’t know the answers to these questions.

My sister, the counselor, says this is normal. Tylyn is supposed to be heading more towards independence. Instead I’m constantly researching the disease. I have to be the translator for the doctors to my daughter and my family. I have to be the educator for people who look at you and say, “What is it again? In English please. “

Take yesterday for instance Tylyn called after her barium swallow study. It went well except the doctor was concerned because her stomach was slow to empty during the study. Normal is five minutes to begin; hers did nothing for 13 minutes and then had five minutes of doing nothing.

My immediate question was, “So did it start emptying at 5 minutes? “

“No, it waited until 13 minutes.”

“And then it waited five minutes?”

“I don’t know, “ was Tylyn’s response.

How am I supposed to decipher what that means? How am I supposed to provide comfort? I have requested the 6^th of July off so I can go speak with the GI. Anything else gets muddled and is not relayed correctly.

In addition I have a file for Tylyn; test results, daily sheets and more. I didn’t think I was going have to be a mom, photographer, chemist and medical secretary. Add more to the plate.

On a lighter note the book is a great read. Sure it’s full of all kinds of medical terminology but I’m geeky and love that kind of thing. Some interesting data that can not be ignored is presented in the very first article.

‘Kelly and colleagues in 1995 investigated 75 pediatric patients who had longstanding reflux who were unresponsive to medical therapy. They found 23 patients had persistent esophageal eosinophiliac despite medical treatment of reflux. They hypothesized that there may be an allergic component to this entity and placed patients on an elemental diet for a period of 6 weeks. Of the 17 that began the trial, 12 completed the trial and 10 underwent repeat endoscopy. If the patients had improvement in their symptoms, a repeat endoscopy with biopsy then was performed following food challenges. On completion of the elemental diet, 80% patients became free of long term complaints and all others reported substantial improvement in their symptoms. The median time for improvement of symptoms was 3 weeks. Seventy percent of patients had asthma or eczema. On repeat endoscopy, 60% showed complete resolution of endoscopic findings. There was a significant reduction of esophageal eosinophiliac in all patients and complete resolution in 50%. The mean Eosinophils per HPF before and after therapy were 41 and 0.5 respectively. The investigators showed a decrease in basal zone hyperplasia and papillary height in biopsy specimens. During a controlled reintroduction of foods, symptoms were recreated in 9 of 10 patients a median of 1 hour after the reintroduction of the offending food. The most common agents were cow milk, soy protein, wheat, peanut and egg. With this evidence, Kelly and colleagues suggested an association between EE and an allergic predisposition. ‘[1]

I find this data a bit staggering and would like to read more about additional studies. The scientist in my head wants to read more about the data, the trends and patterns. I want more information about the antigens, the alleles and genetic markers. I guess that is for another day.

On lunch today I also read: 70% of children with Eosinophilic Esophagitis are males. Once again, lots of conflicting evidence to what is found on the internet. I guess I need to read more. Off I go.  

[1] Kelly K, Lazenby A, Rowe P, et a Eosinophilic esophagitis attributed to gastroesophageal reflux: improvement with amino-acid based formula. Gastroenterology 1995; 109 1503-1512.

The First Appearance of Symptoms

As I write this my mind is not fully on my words. It’s about the pending insurance request for Tylyn to be seen by an out of state doctor. I had to call the PCP about this request this morning. It has been stalled for a week because someone let it slip through the cracks. “Bullshit” was the exact words that the nursing staff used when they discovered it, incomplete and unsubmitted.

Time is the essence now; a request could take days, weeks or months. We are in limbo to buy tickets for our upcoming trip to Denver in October. Waiting to see the staff at Children Hospital and National Jewish for Tylyn’s conditions is requiring more patience than I can muster today. My Monday was spent connecting with folks at both sites to coordinate our visit, along with the financial advisers who firmly let me know. “Her insurance is not covered.” Yes I knew there was a referral needed. Yes I had requested it from my PCP. Yes I realized I would be responsible for full payment. A big sigh and a heap of more things to my plate, hence the follow up with the agitated nurse this morning.  

Yesterday was also filled with additional calls to Ty’s local doctors: the GI and the allergist. An early morning appointment with the Nurse practitioner at the allergist revealed a prescription for a sinus infection, another one for nasal spray, a change in course from Allegra™ to Zyrtec™ and some lifestyle changes, like no nightly snuggles with the puppies. I’m anticipating some additional directions in the future. We will also be starting a daily log of symptoms and overall feelings. The GI will see us the 6^th of July to the discuss results of the test that have been ordered by CH in Denver prior to her visit.

But I have digressed; this is only our current circumstances. In the beginning it wasn’t always like this. In fact mostly doctors ignored any concerns that I had regarding how Tylyn felt.

Sometime in 2005 Tylyn started reacting oddly to food. I say that with 100% certainty because when a child eats something and immediately has violent diarrhea I don't sincerely think that it could be related to anything else other than the food, especially when that particular food is avoided symptoms disappear.

It all started with Burger King™. We would meet Tylyn’s father half way between Binghamton and Rochester for Ty to visit for a few days, week or a summer block. Usually this entailed catching a quick bite either with us or her father’s family. At first I associated it with how quickly she ate. She could make swift work of her food before I had even seasoned mine. Even though that habit was unchanged from when she was smaller I scolded her to slow down.

Soon it became clear Burger King™ was a culprit no matter how slowly she ate. Soon to follow was Pizza Hut™. The latter devastated her because she LOVED pizza. Pepto Bismol™ began to make a more frequent appearance in our household, appearing on the counter, in the fridge and an occasional road trip. We avoided certain fast food joints and stumbled through these uncomfortable embarrassments of stops only minutes after just getting back on the highway.

In 2006, Tylyn had the pleasure of joining my parents, my sister and her children for a road trip to Florida. There was a phone call to me later on why I hadn’t warned them of the Burger King™ syndrome. Tylyn had just about cleared out the car. I realized that Tylyn was too embarrassed to tell anyone that eating food made her sick. Even as adults we hate discussing any uncomfortable facts about the posterior let alone being a preteen girl.

So we muddled through the next couple of years. Tylyn’s only steady boyfriend was the pink Pepto™ bottle that accompanied her to amusement parks, sleepovers and smuggled into her school locker.  She would occasionally get sick at friends houses after eating so she made an effort to get through everyday things we take for granted. Regular visits to the doctor would downplay any of our concerns.

In 2009 I started a new job and made friends with a woman named Sandy. As we complained about our jobs and discussed relationships, work and children, Sandy empathized with my frustration with Tylyn being sick. She shared that her son had also had many of the same symptoms as Ty; abdominal pain, nausea and diarrhea. Sandy recounted the ordeal she underwent getting her son diagnosed with gall bladder problems. Many tests, doctor’s visits and ultimately two surgeries later to remove his appendix and gall bladder at 16 reiterated that Tylyn’s symptoms were not normal and I shouldn’t let anyone discount them.

Back to the doctor we went. She had blood work done and they ruled out Celiac’s. All other blood work was normal so it was not pursued no matter how persistent I was. So we stocked up on Pepto™, avoided certain locations to eat and concentrated on sports and other things.

In 2010 Tylyn was very ill in school and wasn’t allowed to play a basketball game. She was very angry that the principal would not let her play even though the coach and athletic director wanted her to. The school’s reasoning? She had diarrhea. No amount of explaining to them would budge the decision despite my relaying that Tylyn frequently had diarrhea.

Later that night I came down with the flu and chalked it up to she really had been sick and I was being a stubborn parent and should have listened. If I only knew then what I know now.

Our highlight of her sophomore year was being inducted to Honor Society.

Above: Tylyn and I the night of her Honor Society Induction Spring of 2010

Up next: Things get ugly.

Years 2-10 The quieter ones

Once a child gets past the terrible two’s most parents breathe a sigh of relief. Children are sleeping through the night and they have given up on the “NO!” word that is a response to even the slightest parental request. In addition they have begun to find themselves and have created countless of imaginary scenarios everything from friend’s to the boogeyman under the bed.

After being weaned off the bottle at 20 months, Tylyn said goodbye to her formula at around two years. Dr. Scagnelli was pleased that the times in between visits became longer as ear infections faded and she gradually began her solid diet. There still was the occasional doctor’s visit that required extra testing.

The first one was the blood work, followed by a bone scan. Tylyn wasn’t growing very fast. They did a sonogram of her ovaries to see if she was either under or over developed. The bone scan revealed her body was growing just as it wanted to. Other than these occasional visits she progressed wonderfully. She was happy and adjusted despite her father and me separating. She was a little small still, giving way to my new nickname for her “Tiny Tylyn”.

In 1997 I relocated to Rochester. During the transition Tylyn lived with her dad. On one particular visit in the spring of 1998 Ty had wanted to show me how “big girl” she was by washing her own hair. She did a great job, completing the getting ready by herself and combing her long blonde hair.

Determined to continue with her usual independent way and assist with making pancakes, she dragged over a stool to the stove. While flipping a pancake I put my hand on her shoulder, causing her to cry out. An examination reveal bubbled and beet read skin along her neck, hairline and shoulder I had touched.  I trip to the doctor confirmed what it appeared to be- a chemical burn. The culprit? Flex shampoo that she had used that morning. That was the beginning of many years of non perfumed or beauty products most of us take for granted.

In July Tylyn came to live with me permanently again.  That year she suffered from the occasional ear ache and had a nasty bout with strep throat. They were unsure if the strep had turned to scarlet fever because it seemed that she always at some point had a rash of some kind on her body. By this date Tylyn had seen four different pediatricians.

That summer she was still wearing 2T’s. As most parents know a child should be in XT’s for their age, X being 2-5. She should have been wearing 4T’s but alas they were too large. In the beginning of September of that year Tylyn woke up crying complaining that her legs were extremely painful. No amount of consultation could relieve her of the discomfort. It continued for a week. That month I kept checkmarks of her growth progress on the inside wall of her closet as I always did. By October my little girl had grown three inches and had gone through three shoes sizes.

The next few years were uneventful with only an occasional visit. She remained small for her age but not too bad. She had a love for seafood, milk, popcorn but disliked chocolate. Tylyn and I traveled to Maine and a few other places. She became independent and a self sufficient child. She visited me at my new pharmaceutical position and took up an interest in chemistry. She excelled in school and it seemed to be we were out of the clear.

I now know it was the lull before the storm.

Above: Tylyn at my take your daughter to work day at a chemistry lab that was my employer in 2000. 

Up Next: The first appearance of symptoms.



 

Introduction to Eosinophilic Esophagitis and Gastroenteritis

I’m a little surprised that my very first blog is not about the topic that consumes my life 24/7. Most people, including me, would think it would be about photography, cameras and all things wedding related. It’s actually about a love that started a long time ago, one that started with the birth of my first and only child.

I want to use this blog as a resource to help other families that are going through a similar process as us. It is a place for questions and answers, enlightenment and support and most of all information because there is little to find on the vast internet about these newly discovered diseases- eosinophiliac esophagitis and gastroenteritis.

Before I share a little background about my 17 year old daughter and why we now think her diagnosis began long before this past year of testing, I would like to help those of you that aren’t familiar with these conditions to understand what they are called, their symptoms, statistics and treatment. I say treatment because there is no cure.

The content out there about these diseases is very confusing and conflicting. I know when my daughter was going through the process of being tested and diagnosed in the spring of 2011 it was extremely overwhelming searching for answers until I stumbled across another man’s blog about his daughter. I found helpful and comforting to know the long testing (years) is not uncommon, nor is the frustration of lack of resources. As we continue to one of the few sites in the country to pursue treatment, I will keep you informed of her journey. I will best describe our experience in easy to use terms to avoid further confusion while explaining tests and related procedures.

Now without further ado here is the bread and butter about Eosinophilic Esophagitis and Gasteroenteritis.

Key Medical Terms:


Eosinophils (pronounced: ee-oh-sin-oh-phils):  

Above: A normal peripheral smear of blood containing an Eosinophil  with red blood cells.

These specialized types of white blood cells (WBC) are present in normal healthy individuals.  They are found in the blood at typical concentrations of 1-3%. As part of the immune system they assist with parasites and certain infections. They are found in areas of the brain, the lower intestinial tract, ovary, uterus, spleen, lynph nodes.

They are also associated with hay fever, asthma and other allergic reactions.

Places Eosinophils are not typically found are the lung, skin, esophagus and some other internal organs. The presence of eosinophils in these organs is associated with disease.

Eosinophilic Esophagitis (pronounced: ee-oh-sin-oh-phil-lic  ee-sapho-gi-tis)   

This is the presence of Eosinophils in the esophagus mucosal lining. A minimum of 15 eosinophils per high power field are required to make the diagnosis. The sample that is analyzed to determine the concentration is collected during an Endoscopy via a biopsy.

Eosinophilic Esophagitis, or more commonly called EE, is newly discovered, only in the past four years. Complications include food getting stuck in the esophagus due to restrictions caused by rings or furrows because of  changes in the esophagus. Symptoms besides food impactation are heartburn and difficulty swallowing.

Treatment of EE may include cortisteroids, esophagus stretching, food restrictions due to allergies or the implementation of a feeding tube in severe cases. However, there are a small percentage of patients that do not have any food allergies. Most treatments are tailored specifically to the patient.

Although mostly in children, it can be found in adults and is being diagnosed more commonly and can be mistaken for GERD (Gastroesophageal reflux disease) in some cases. Conflicting data states that it is predominantly white males. Occurance is 1 in 10,000.

Current studies are being done at specialty hospitals in Ohio, Pennsylvania and Colorado looking into whether this has a genetic correlation.

Eosinophilic Gastroenteritis (pronounced: ee-oh-sin-oh-phil-lic  gas-tro-enter-i-tis): This is the increased presence of Eosinophils in the gastrointestinal (GI) tract. The stomach is most commonly affected followed by the small intestine and the colon. The sample that is analyzed to determine the concentration is collected during an Endoscopy via a biopsy for the stomach  and upper small intestine. A colonoscopy is used for the lower small intestine and colon.

This disease is also newly discovered, only 300 documented medical cases since 1937. Symptoms include nausea, vomiting, diarreha, weight loss and abdominal distention..

Treatment may include corticosteroids. Typical persons affected are 30-50 year olds with slightly higher incidence in men.

So you or your child need to undergo some tests for diagnosis? These will be done and may be required as often as quarterly or yearly for some individuals to track disease progress and treatment.  

Endoscopy (also called an Upper GI study)- Typically a twilight anesthesia is given so the patient is sedated but not unconscious. This type of anesthesia allows for easy wakening and a “sleepy” state by the patient to be responsive to the doctors simple requests. Most often they use a IV to administer the drug. During the endoscopy they may do biopsies of the esophagus, stomach, and small intestine (upper). Procedure is done in an outpatient facility, normally by a GI doctor but will require someone to drive you home afterwards. No eating or drinking 8 hours before the procedure. Total test time is 15-20 minutes but leave enough time for the required thirty minutes of observation afterwards and the preparation before.

Colonoscopy- Typically general anesthesia is given so the patient is sedated. During the colonoscopy they may do biopsies of the small intestine (lower), large intestine, colon and rectum. .  Procedure is done in an outpatient facility, normally by a GI doctor but will require someone to drive you home afterwards. Laxatives are given to clear out the system the day before the test. No eating for 24 hours. Drinking is minimal 8 hours before the procedure. Total test time is approximately 30 minutes but observation afterwards and the preparation before totaling about 2-3 hours.

Blood Tests- Complete Blood Count (CBC) which is a panel of the blood that includes but is not limited to the counts of red blood cells, white blood cells and platelets. They give an exact count of the number of cells and may reveal an increase of the peripheral blood count of Eosinophils.

They may also undergo the following tests:  (my daughter did)

Barium Enema – To test for Chron’s

HIDA Scan (cholescintigraphy)- To test gallbladder

CT Scan of Abdomen- To see organs and thickening of abdomen wall

Sonogram Abdomen - To see organs and look at gall bladder

Barium Swallow Study- To watch barium pass from esophagus to intestines (Scheduled next week)

IBS Blood Panel-A new blood test from Prometheus that helps differentiate between Irritable Bowel Syndrome and other GI disorders (To be scheduled in future- needs Board approval)

Some helpful links:

NJ/PA/DE Support group for Eosinophilic Diseases


Pictures of Rings, Furrows & Biopsies


Andrew's Blog About Ruthie

The International Gastrointesinal Eosinophil Researchers (TIGERS)

Campaign Urging Research for Eosinophilic Disease (CURED)

American Partnership for Eosinophilic Disorders

Quick Facts about Eosinophil Gastrointestinal Diseases (EGID's)

Coming up Next: The first 2yrs- What it meant then and what it means now.