Send In Reinforcements

I know it has been a while since I last wrote in this blog. Not only have I been busy shooting weddings, studying for my new career as a medical transcriptionist and working, I needed to take a much needed break from doctors and Tylyn’s condition.

Shortly after I last wrote our insurance company denied her to seek treatment in Denver. Not only was I angry about the doctor’s office reaction (“We will help you with the appeal” when they were the one’s that didn’t complete the paperwork in the first place) I was also frustrated with how helpless I felt as a parent.

We decided to collectively, as a family, to pursue a gluten free lifestyle and Tylyn would try to stay away from milk products, with the exception of hard cheeses as approved by my new best friend, Digestive Health By Elaine Glottschall. It is diet targeting relief for Crohn’s, Celiac’s, Chronic Diarrhea and IBS.

Interestingly enough in the back of the book it lists dairy products that are okay- like cheddar, which Ty has no problem with. Two that she can’t tolerate that are on the “no-no” list? Cream Cheese and Mozz. Hmmm- guess that’s why we had them on the “bad” list before we started eating like this. .

Anyway, we are only on week four and sometimes she slips; after all she is a busy seventeen year old who works. She is quickly realizing good food=good tummy.

In addition, we only eat organic food now. Also, BPA free, no cans, bleached paper towels or unnecessary plastic.

So why is this worth a blog?

Well an odd thing happened to me last week. After eating gluten free for about two weeks I noticed a change.  I’m not talking about taste. Organic just TASTES better. The milk is like when I was a kid, tomato soup brings back memories as well, and even crackers seem fresh- yes- even without the preservatives!

No, what I’m talking about is a reaction I had upon eating products with yeast. I mean yogurt and bread after abstaining. Not only did I develop a itchy rash all over my skin with hives on my legs, back and around my mouth, I also had slight swelling of the lips and the second time a slight asthma attack.

No mind you I use an inhaler only when needed, personally about 6-12 times a year, mostly early spring and fall. NEVER after eating.

The other event worth noting that after a battle, Tylyn received a flu vaccine. Being fair I got one also, although previously I was against it. In light of Ty getting it 5 times last year and the 5th landing her in the hospital, I made it a requirement this year to keep her shaky digestive system a reprieve.

No mind you I have not had an immunization in a while. I have no known allergic to eggs (which is the warning) nor does Tylyn.

I experienced itching, pretty intense but mild compared to what I had been suffering two days prior after ingesting yeast. My inoculation site swelled mildly, growing slightly hard and red- about the size of a quarter. That lasted about 3 days.

Tylyn however had a large welt. It was bright red about a little smaller size of a woman’s palm and hard. Itching for her was unbearable. I downplayed it to hide my concern. Too boot she has slept non stop.

Even now, 5 days later it is still irritated. After talking to friends, family, colleagues and coworkers, it is not normal.

A call to the (nice) allergist confirmed it was allergic reaction. Her primary agreed. A note was added to her chart and next time she will receive the nasal version.

Sigh.

Will this ever stop?

I only write this now as I want to let others know about the concern. No IgE response for serum or SPT, but clearly a reaction.

I guess my advocate days are not over; I have lost this battle as my daughter did not want to get the shot in the first place and the war is far from over.

Itchy and Scratchy

Yesterday Tylyn received her food patches. I had taken a trip to Wegmans the day before and spent my lunch raiding the bulk food aisle. Luckily for us they also have an extensive natural food section which led me to hitting a jackpot with freeze dried fruits. In the bulk section the fruits are loaded with Red40 and sodium benzoate (a preservative) that many people are allergic to. For my samples I needed to be as scientific as possible.

Armed with baggies and a mortar and pestle, I went to work grinding up my foods.

Grinding up foods on my lunch hour

For fruits I had chosen:

Apples

Bananas

Strawberries

Blackberries

Raspberries

Blueberries

Not knowing what exactly the Allergist’s office had I also chose:

Peanuts

Oats

Sesame seeds

Almonds

Sunflower seeds

Needles to say I had my work cut out for me but soon I had our own little collection of packets.



Food Samples for APT testing



On Tuesday I sent her off to the doctor’s with Dan and our samples. In addition the allergy nurse added:

Wheat Flour

Rice Flour

Milk Powder

Cornmeal

Soy

Egg White

Also due to my request for seafood they also did SPT for: Crab, Trout, Salmon, Lobster, Clam, Tuna, Shrimp, Perch, and Oyster. Surprise, surprise- negative.

When Tylyn came home I found out why they consider the test so technique dependent. Instead of the small chambers I posted as little example in my previous blog, Tylyn’s were about the size of a dime. The aluminum vessels were not contained in an adherent tape either, by 4pm hers was already coming undone after an afternoon of lounging on the couch.

To my dismay I saw ground sesame seeds that had fallen and were now swimming around inside the loose tape. We immediately bought some breathable athletic tape and replaced the curling paper tape.

After a trip to the school to hear about Tylyn next adventure in Disney next spring with the band and chorus, we returned home. It was in this time that Tylyn made me aware that three particular spots were bothering her quite bad. One was the second from the top on her left shoulder blade, the other one directly beneath it. When I asked her to clarify bothering she told me the third one down made her want to scratch her skin off. A quick peel back of the tape to see the writing through the chamber tape revealed banana and its partner in crime blackberry. It makes me wonder if my theory about the smoothies was right.

This morning she let me know that another couple of spots were bothering her, including an additional one on the top of her right shoulder blade. We gave up our inspection when she decided the tape removing the fine hairs on her back wasn’t worth it. I guess we will just find out tomorrow.

On a brighter note, I talked to NJH and the Allergist Tylyn will be seeing will be contacting Dr. Nightmare to ensure he is on board with Tylyn coming to Colorado. They also are a little perplexed why a doctor would deny a referral and say he was treating her when there is no course of treatment in place. I guess if someone wants to swing names around, they better be prepared for people to call their bluff.

Until next time, keep scratching as I know Tylyn is waiting to use her Zyrtec again. 

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.

Allergy Testing for EoE & EGE

I have spent the last several days researching information and trying to compose this blog regarding the allergy testing Tylyn will receive at the end of this month. I’m anxiously waiting for the testing to be done, as her trouble swallowing has become increased and itchiness is driving both her and me bonkers.

True to everything Eosinophilic Eosphagitis (EoE) and Eosinophilic Gastroenteritis (EGE), there is little information out there, but what is published is conflicting.

Almost all the data supports that EoE is caused by allergies or more clearly a food hypersensitivity, as a true food allergy requires the presence of IgE antibodies (to be explained below). The treatment for children results in the following remission rates of EoE below.

Diet related:

Amino Acid-based Formula (Elemental diet)- 96-100%

Empiric Elimination (6-food elimination)- 50-74%

Direct Elimination Diet (SPT & APT based)- 69%

Pharmaceutical Related:

Systemic- 93-95%

Topical (flucticasone, budesonide)- 50-95%

Now if I have caused confusion, let me explain some of the definitions above.

Types of allergy testing for EoE:

SPT- Skin Prick testing (or Scratch test)- Used for over 100 years,  this is the most commonly performed allergy testing and can be done in a physician’s office setting. This is great for identifying  Type I Hypersensitivity . With this test a few drops of the suspected allergen (ex. food, pet dander, dust, pollen, dust mites etc) are pricked on a patient’s skin, with the most ideal location being the forearm. Results are available in a few minutes and can be performed on patients as young as four months.

Skin Prick above testing with several positive reactions
 Histamine is the positive control.

Some doctor’s offices do testing on the back, though it is a more sensitive area than the forearm. I had allergy testing done as a child and they performed it on my back. When it was done as an adult they did it on my upper arm near the bicep area.

This test is performed also with a control to ensure that there are not false negatives.

However, this particular test is not 100% accurate as a negative response maybe attributed to the following factors:

-         Not enough concentration was used to evoke a response in the body

-         The test is technique dependent

-         The allergy is non-IgE- mediated (see Patch Test below) such as a reaction to food additives

In addition the following points must be considered:

-         SPT is for identifying an IgE-mediated allergy, meaning that the allergic response is immediate and rapid in onset, may present themselves as wheezing, hives, itching and anaphylaxis.

-         A positive SPT may also indicate a food sensitization but not necessarily a food allergy. 50% of patients with food sensitization are tolerant to food when ingested.

-         Foods most identified with SPT are: cow’s milk, egg, peanut, shellfish, peas, beef, fish, rye, tomato and wheat.

-         Fewer reported successes when an elimination diet is based on the SPT for EoE patients

-         Requires stopping of certain allergy medications to perform testing

-         Yields only a positive or negative result.

-         Some food allergens such as: fruit and vegetable allergens are unstable and denature very quickly.

-         Negative result very reliable, positive result is reliable in only 50% of patients

Radioallergosorbent test (RAST or newer versions called ImmunoCAP)- Also utilized for Type I hypersensitivity food allergies, this is a blood test that specially measures IgE in the serum for a suspected allergic. Posing no risk of allergic reaction which can occur with SPT, this can be used as an alternative in the case of a possible anaphylactic reaction, in addition patients do not have to stop any allergy medications.

This test is more expensive than skin prick testing, yields the same results, is applicable to over 150 foods for a single sample, provides the best reproducibly and is extremely sensitive due to its high specificity. Researchers have been able to provide “predictive values” for some of the more common foods.

However, this particular test is not 100% as a negative response maybe attributed to the following factors:

-         Not enough concentration was used to evoke a response in the body

-         The test is technique dependent

-         The allergy is non-IgE- mediated (see Patch Test below) as some food additives are

In addition the following points must be considered:

-         RAST is for identifying IgE-mediated allergies, meaning that the allergic response is immediate and rapid in onset, may present themselves as wheezing, hives, itching and anaphylaxis.

-         Fewer reported successes when an elimination diet is based on the SPT for EoE patients

-         RAST testing can show the amount of IgE present to each allergen.

-         Negative test yields a 90% chance of being non-allergic but a positive reaction may not necessarily confirm and allergy but rather a sensitization (less than 50%)

-         Because IgE is an antibody response it has a memory, which means it may indicate that a patient maybe has positive IgE years after exposure and after they have outgrown the allergy.

-         Usefulness in low-level (1-5uL) sensitization is unclear

RAST Rating, Response & Levels of IgE

0          <0.35                      Absent or undetectable

1          0.35-0.69                Low Level

2          0.70-3.49                Moderate Level

3          3.50-17.49              High Level

4          17.50-49.99            Very High Level

5          50.00-100.00          Very High Level

6          >100.00                   Extremely High Level

Atopy Patch Test (APT): A newer technique and more controversial, this type of testing is used for identifying Type IV Hypersensitivity.  Because this testing is specific for non-IgE mediated responses, or more commonly known as cell-mediated responses, the first step to is to re-expose the patient. A cell mediated response appears 7-14 days after initial sensitization and reactivates within 2-5 days of re-exposure. 

With this test a few drops of the suspected allergen are placed in an aluminum chamber (or called the Finn Chamber) that is adhered to tape. They are then placed on the patient’s skin and left on for 48 hours with, with the most ideal location being the back. After the two required days the chambers are removed and results are read. They are also re-read at 72 or 96 hours. If applied correctly by an experienced physician’s office or facility, reliable and reproducible results can be obtained.

Above: APT with Chambers taped to patient's skin



Above: Several positive results from APT



However, this particular test is not 100% as a negative response maybe attributed to the following factors:

-         Not enough concentration was used to evoke a response in the body

-         The test is technique dependent

-         The allergy is IgE- mediated (see Skin & RAST testing above)

In addition the following points must be considered:

-         APT is for identifying a non IgE-mediated food intolerance, meaning that the response is delayed and may take several days or a week to present a response.

-         A positive APT may also indicate a sensitization at some point of the patient’s life.  

-         Foods most identified with APT are: wheat, corn, beef, cow’s milk, egg, chicken, rye, soy, oats, barley and potato. .

-         APT is not standardized for the type of foods to use (fresh versus extract)

-         Requires stopping of certain allergy medications and steroids to perform testing

Results are reported as:

Negative (-)

Irritant Reaction (IR)- Follicular pustules & burn like reactions

Equivocal/uncertain (+/-)- Pink area under the test chamber

Weak Positive (+)- slightly elevated and pink or red plaques usually with mild vesiculation

Strong Positive (++)- are ‘papulovesicles’ or papules that change into a blister

Extreme Reaction (+++)- spreading redness, severe itching and blisters or ulcers

Problems food that are present with EoE & EGE:

Food Allergy:  Invokes an immune response due to a reaction with a food protein. This occurs when the immune symptom mistakes protein of foods as being harmful causing the body to have a reaction. An example of non food allergies is latex sensitivity.

This is also called IgE mediated immune response. Food Allergies can range from mild to severe with a more rapid onset of symptoms ranging from seconds to one hour.  Classified as a Type I hypersensitivity it is an antibody mediated response.

Common symptoms of food allergies:

Itching (mouth, lips, tongue, throat, eyes, skin)

Hives

Difficulty swallowing

Runny or congested nose

Wheezing or shortness of breath

Nausea

Vomiting

Abdominal pain/cramps

Lightheadedness

Fainting

Anaphylaxis

Causes: Mostly food and directly related to the food protein in the case of eggs, where patients are most frequently allergic to the white instead of the yolk.  

Over 90% of the food allergies are attributed to eight foods: milk, eggs, peanuts, tree nuts, seafood, shellfish, soy and wheat. Allergies can also be regional in the case of increasing number of rice allergies in East Asia. In addition allergies to seeds, especially sesame are on the rise.

Other foods that can have allergenic proteins associated with them besides the ones listed above are derivatives of those foods, for example cheese, vegetables, spices, fruits, synthetic and natural colors and chemical additives. In addition patients that have a birch allergy may react to additional classes of families such as fresh apples, cherries and peaches.

There is also data which supports cross reactivity. Some patients who are allergic to cow’s milk also show sensitivity to soy-based products. Often patients with latex allergies develop allergies to foods such as bananas, kiwi, avocados and other foods.

Diagnosis: Easier than food intolerances because reactions are more apparent, linking ingestion of food or contact with allergen to symptoms. SPT, RAST and food challenges are the most common types of allergy testing.

Food Intolerance (Food Sensitivity): A negative reaction in response to food, beverage, additive or compound found in food (like dye or preservative) that produces symptoms in the body. This also can include a gastro-intestinal response to foods.

This is also called Non-IgE mediated food hypersensitivity. Non-IgE or Food Intolerance is more chronic and more difficult to diagnose. Unlike a food allergy, intolerance symptoms usually begin about a ½ hour after ingestion but symptoms may be delayed for 48 hours. Classified as a Type IV hypersensitivity it is a cell mediated response.

Many of these food intolerances are directly related to the food protein as shown in milk-soy protein intolerance (MSPI). MSPI is a non medical term that describes a food intolerance to milk and/or soy protein during infancy and early childhood. Tylyn had this.

Common symptoms of food intolerance:

Skin Rash

Hives

Dermatitis

Eczema

Asthma

Unproductive Cough

Sinusitis

Nasal Congestion

Abdominal Cramps

Nausea

Gas

Intermittent Diarrhea

Constipation

Anaphylaxis (less common)

Causes: Both natural and artificial ingredients, chemical intolerances, viral infection, illnesses to environmental exposure, deficiencies in digestive enzymes, and autoimmune diseases such as Celiac disease which results in gluten intolerance. Food sensitivity may be linked to chemicals mimicking hormones, as it occurs more commonly with women. This is perplexing due to EoE occurs in males more than females.

Diagnosis: More difficult than with allergy or IgE mediated immune responses. SPT & RAST testing are not used as diagnostic tools for food intolerance as it is a non-IgE mediated immune response. .

Alternative testing includes APT testing due to the delayed reactions that can not be captured with SPT. The least expensive and less scientific elimination or empiric diet can be followed, although it may take up to 6 weeks before relief of symptoms can be seen.

In addition, IgG testing and  ELISA/ ALCAT (or ACT) testing for IgG-mediated immune response can be used. This is mostly for delayed allergic reactions of Type III hypersensitivity.

Controlling a patient’s diet for food allergies/sensitivities are the following strategies:

Elemental Diet- is a liquid diet that is usually composed of amino acids, fats, sugars, vitamins and minerals, providing all the nutrients the body needs. It is ingested or in more severe cases, uses of a gastric feeding tube or intravenous feeding This diet lacks whole or partial protein due to its ability to cause an allergic reaction, therefore put no stress on the digestive system. Very harsh and not very palatable.

Empiric Diet- The big 6- Removal of  the most common food allergy triggers from the diet: dairy, nuts, wheat, eggs, soy, and seafood.

Direct Elimination Diet- These allergic foods are removed from the diet based on SPT and APT-based testing.

Worth mentioning here is 70-80% of patients with EoE have had postive SPT or RAST results. Patients with atopic EGE often have multiple food sensitizations with positive SPT. However of the three subtypes of EGE, mucosal, muscularis and serousal, the first tend to have IgE-mediated food allergies.

Tylyn's allergist (the nice one) has decided to include chicken in the patch testing based on my data from Tylyn’s food diary. Although they have not adminstered this with the patch testing she will contact a colleague at CHOP (Children’s Hospital in Philadelphia) about obtaining the material to test.

As a mom and scientist I am very interested in the tests and the results.

CH in Denver called today as well. Tylyn has been rescheduled for November. She advised me that Tylyn will have to undergo repeat allergy testing while she is at the facility but understands that I am trying to provide some temporary relief until our appointment. In addition she did mention there are only so many tests that can be performed per day and there is a lot of testing to be done.

After all my research do I believe Tylyn has a “food allergy”? Maybe, maybe not. I am leaning more towards food intolerance due to symptoms and lack of any responses on her SPT performed previously.
Sure her results revealed a high allergy to dust mites, pollen and a few other things but nothing other than a slight 2+ reaction of milk that was subsequently proven negative by a RAST test. As confirmed the SPT is false positive in 50% of the results.

As Tylyn counts down to her new job and I count down to getting answers. Thirteen days.

The Waiting Game

Whoever came up with the term waiting room was not entirely correct. While it is true that you go there and wait, more often than not there is more waiting outside of the doctor’s offices.

Like the waiting for the blood draw on Wednesday or how about waiting for the results?

It will take most likely a good two weeks to receive the IBD results, due to the blood needing to be sent to California to be processed. I’m beginning to think moving outside of NY may hurry things up.

Or how I am waiting for Tylyn’s PCP phone line to not be busy so I can get the results of her CBC from 2 weeks ago? They never call, good or bad and I’m quite curious of what her Eosinophil levels were in the thick of her allergies and sinus infection.

Perhaps it could be patiently waiting for her original allergist to call back after I put in a request to go back to her and leave the nightmarish one who wants to argue points that are neither valid nor true. I will do nothing short of beg, plead or get down on my hands and knees to go back the one in Greece near my previous employer on Long Pond Road. Friendly and knowledgeable we were yanked from their grasp when Tylyn’s GI doctor wanted us to coordinate with the one she has now.

In fact while I was feeling quite helpless yesterday dealing with Dr. Nightmare my thoughts wandered back to the kind clinic who actually was the first one’s to mention Eosinophilia and explain what it meant, what could cause it etc.

Sigh. It is like having an ice cream cone that a bully rushes by, grabbing it out of your hand and throwing to the ground, laughing as they run off. Jerk.

Okay one waiting game done. PCP never ordered a CBC with Differential. No way to tell her Eosinophil count. Perfect. Good to know that I get to be the bad guy that tells Ty she needs to have blood work done first thing on a Saturday morning. Soon her veins will look like the people I drew back at Wilson Hospital for my rotation in college.…..

While I wait for the other call, I ponder on Tylyn’s status. I wince. That sounds cold, like she is a patient instead of my flesh and blood. But looking at things objectively lets me think clearer, dealing with only the facts keeps me emotionally sound.

She is in a state of excitement. Though yesterday was another bad day for her physically, her outlook is one of positivism.  She received a long awaited phone call from a new employer giving her a full time job. While she dreams of what color her new car will be, I wonder silently if moving her hours up to 40 from 16-20 will be too much from her. Call me over protective but when you child is exhausted from a four hour shift; I’m not quite sure if eight will be over doing it.

Not to mention everyone at her current job knows she is sick. It is easier to accommodate your bathroom habits for four hours, than eight, after all think back when you had the flu real bad. Could you sincerely limped through 4 hours at a location one mile from your house?

I don’t think I’m going out on a limb here in being concerned. She is determined though and I am supportive. Part of me is relieved. Her former employer was not quite as understanding when she couldn’t work her shift after being in the hospital. Takes me back to a job I had when my car was totaled on the way in to work on a snowy morning. Herniated disc and in a lot of pain, I was not up for standing on my feet that day and my boss wanted to know if I could drive the hour in and pick up work to do at home.

Right on that. Not.

Still, I’m in that protective mode though, but letting her fly. Someday she will have to find her balance, although I’m not quite sure her AP classes, job and soccer are the right mix. She is hell bent on playing a sport this fall after being robbed of softball this past spring.

She feels invincible on her good days, which is the youthful part of her. Let’s just hope we can get more and more of them, but I guess that take me back to the original topic of this blog. It is all a waiting game.

Just as I was getting ready to post- a break through! Our original Allergist called back and after a lengthy conversation with a more sincere doctor it seems as our roadblock has been removed. Although she admits the technique of patch testing is very sensitive they have done it and will do some preliminary tests on Tylyn including patch and RAST testing.

Halleluiah!!!!

Three appointments in total; one to apply the patches, one to remove them and then a follow up with the doctor.

Our first appointment is on July 26^th and I will be sure to cover the specifics in my next blog. Sorry to leave you waiting!

Good Days and Bad Days

Since I last wrote we have seemed to have more bad days than good days. During my last post I had hoped she had been relaxing in the pool. I arrived home that night to find her confined to the couch, ill and exhausted.

The Zyrtec has not helped. Her insurance have denied her referral approval at least temporarily until someone who has seen her states that she needs to go out of network. According to my discussions with them the PCP won’t state that as they have not treated her and know nothing about the rareness of the disease.

Although the GI doctor is completely on board with Tylyn going to Colorado, his paperwork also does not reflect what the insurance company needs; a reason why she requires an allergist and GI doctor 1630+ miles away when there are plenty of competent doctors in WNY to treat her.

Really? Name one.

Although they empathize with why we want to go to a specialty clinic not one of the doctors has stated a need. Our case is weakened when Tylyn’s current allergist provides a treatment regimen that does not address anything she needs to be seen for.

This resulted in a heated discussion with the Allergist on Tuesday. I had wanted an appointment to follow up on the allergy medication that is not helping Tylyn. I also wanted to discuss a course of treatment in the interim as her GI doctor is doing on his end.

He stated he had no openings for Tylyn until July 14^th. He proceeded to talk down to me that he knew Glenn Furuta, that he was aware of who David Fleischer was and that he had worked with them both and could coordinate treatment for Tylyn. I reemphasized that he did not even recall how long Tylyn had been on the Prednisone and that when it caused problems he had referred her to her PCP who also knows nothing about any course of treatment she was undertaking.

The allergist decided to lecture me that he was not an acute care clinic and each and every patient got a portion of his time and that it was wrong that people had tried to fit me in the next day but he would not see her. He then continued to lecture me that he knew what Eosinophiliac Esophagitis and Gastroenteritis was and that he would gladly discuss what he knew because he had worked with Dr. Furuta.

Sick of being bullied at this point I plainly state he puts down that he wants to treat my daughter, but there’s been no talk of testing, more specifically, patch or RAST testing. I know it will be repeated in Colorado but we could begin to uncover some preliminary allergens here to help her feel better. I said you might know Dr. Furuta & Fleischer but you most definitely are not them.

The call ends with no resolve other than the Allergist indicating that any letter that needs to discuss Tylyn’s suggested course of treatment in Colorado should be well thought out and written in a well executed manner. No duh. Like I was actually was hoping for more of the same “We can treat her here.” which according to the insurance company has put Tylyn in jeopardy of possibly only receiving a referral for the GI and not the Allergist in Colorado.

A late afternoon call from Denver revealed Tylyn can’t go to the October 27^th clinic due to obligations of Dr. Furuta. I count my blessings that I haven’t purchased plane tickets and that it gives me more time to get the insurance straightened out, however it does mean longer until Ty is seen and her allergist maybe Dr. Fleischer or another doctor. Since requests for the insurance company have to be doctor specific it poses a problem. Back to square one.

Yesterday we went to the GI. I brought with me my charts and data; only two weeks worth but beginning to show a trend. Large amounts amount of bowel movements (5-6)=lots of pain and exhaustion. Low number (1-2)= little pain and relatively a good day. Also correlated with this data is the day she exhibits the most allergic symptoms, i.e.  headache, nausea, itching, etc., she has the most problems with her tummy. I’m talking on average between 10-14 symptoms. Good days are as little as three.

Requires more research and perhaps a beginning of an elimination diet. My rhetorical question for Colorado was, why does the chick with the 2 year degree come up with all the data?

The afternoon allergist appointment was no help either. The NP was hostile at best and then rebuked my data about the FDA changing the warning of the Singulair warning in three years claiming, “ In ten years she only had one patient come forward and say they were having mood changes.” Perfect. As the largest drug for Merk grossing $3.9 BILLION dollars, what is one little life in one doctor’s office?

And by the way, hasn’t there been study after study about patients not reporting how they feel because doctors are quick to blame everything on psychological issues. Hmmm…. Suicidal thoughts on an asthma medication? Not what I would consider typical side effects. Lord knows they have blamed Tylyn’s medical problems on emotions.

But I have regressed. I forgot the most important part. How the NP said she didn’t really know that much about EE or EG. How she wasn’t the best person to treat Tylyn. How patch testing is only for chemicals.

Wait---- What? So since when are peanuts a chemical? And corn and the other food allergy patch tests that are done in Denver.

Isn’t that contradictory to the following excerpt from this article? 

‘Egg, milk, and soy were identified most frequently with skin prick testing, whereas corn, soy, and wheat were identified most frequently with atopy patch testing. In more than 75% of patients with EE, both symptoms and esophageal inflammation can be significantly improved with dietary elimination of foods. Skin prick and atopy patch testing can help identify foods in most patients.’

Additional resources can be found here which counter the statement made by the allergist yesterday that RAST testing is unreliable compared to skin prick testing.

‘In vitro tests for specific IgE (radioallergosorbent tests [RAST]) are more practical than prick skin tests for food allergy screening in the primary care office setting.’

In the same article there is additional information:

Although allergic eosinophilic gastroenteritis is an IgE-mediated disease in some patients, about one half of patients do not exhibit specific IgE antibody to foods. Patients with allergic eosinophilic gastroenteritis have severe reflux, postprandial abdominal pain, vomiting, early satiety and diarrhea. The diagnosis is suggested by the presence of inflammation and significant eosinophilic infiltration of the esophagus, stomach or small intestine. Treatment with a strict avoidance diet using an elemental formula is efficacious in some patients.

And this, which I believe started when Tylyn was a baby:

The symptoms of infantile proctocolitis are limited to the lower gastrointestinal tract and are of short duration. The ingestion of the responsible food (usually cow's-milk protein or breast milk from mothers who are consuming cow's milk) provokes diarrhea with blood in the stool, but anemia rarely occurs.

I find it interesting that under allergist eosinophiliac gastroenteritis the symptoms of abdominal pain, vomiting, early satiety and diarrhea all describe Tylyn with the exception of only an occasional vomiting.

We left both doctors yesterday with some drugs. Two inhalers from the Allergist who claims she can only treat for the upper allergies like hayfever or rhinitis, and a nice dose from the GI of Pentasa which is a glorified name for an anti-inflammatory that is used in Chron’s disease.

At a whopping 2,000 mg (2g) twice a day, yes folks that is 4 pills at each setting for a child who for the last 5 days has trouble swallowing,  it seems a little strange that they haven’t at least attempted an elimination diet or some allergy testing.

At least the Pentasa is Dr. Furuta’s idea because our local GI admits he is not sure how to treat.

We rounded out our day with an hour wait for her IBD antibody testing to be drawn. Another test ordered on behalf of Dr. Furuta.

Everyone is frustrated with our local doctors and it maybe summed up best with the following FB post by Tylyn last night:  

‘secret#269; gotta love when your mom knows more than your specialist doctors you see :D’

I don’t know more baby girl, but I am trying harder.

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.

It's all about attitude

I am exhausted. Burning the candle at both ends has worn me out. I am not sleeping well and I’m still trying to fit 36 hours in a single day.

Although my mood is not as good as Tylyn’s, I still, physically, fair better than her. I guess attitude is everything.

She called this morning to let me know last night was very rough. She could not fall asleep at all. We had purchased a second hand couch; something that was in great shape but still wasn’t an arm and a leg just in case the puppies and cat decide to destroy it.

She had wanted to sleep with the puppies and her room is hot. She tossed and turned for a while and at midnight she had to shower because she was so itchy. I’m disappointed my efforts of washing down everything including the walls and floor at 11:30pm didn't work out so well for her.

She woke this morning with no relief. The Singulair does not help at all. We had tried that because the allergist had given her some samples and we had forgotten to get Zyrtec. I will pick some up tonight on the way home for sure.

She is still feeling full after eating. Yesterday she complained of pains in the center of her chest near her sternum. Her direct quote was, “Like somebody is stepping on me. “

While her demeanor stays happy and an introduction to a coworker revealed she has great positive energy. My mood is not as chipper, I am annoyed when people ask if she is better. No, no change. No, they can’t change treatment. BTW did I mention THERE IS NO CURE?

Sigh.

I received her results from the Barium swallow study. Normal. Interestingly enough I spoke with a woman who has been tested for almost all the same things as Tylyn, many different doctor’s trips, similar complaints. It’s amazing how God works to bring people in your life.

Speaking of faith, mine is a bit faltered. I know this should be the time when I’m strong. This is the time that I sing all the praises to God and his glory. I’m finding that a bit difficult right now. Kind of like I am getting the short end of stick. It’s selfish I admit, because it’s actually Tylyn that is being robbed, not me.

Saturday on our way home from photographing a wedding Saturday, Dan and I were discussing Tylyn and her condition. Dan said that she would be soon in her twenties and needed to know how to take care of herself. I starting crying uncontrollably knowing that I wouldn’t be able to make everything all better for her forever.

Despite her being dependent on me more now, in regards of making arrangements, calling doctors and interpreting results, I want her happy and healthy. I guess I should count myself blessed that I have a daughter who is alive and happy.

I just received a text from Tylyn, she rejoiced in a halfway normal bowel movement. I guess it’s celebrating the little things that get you through because if you focus on the negative, it will bring you down.

Another lesson taught from child to parent.  

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 Facility

It’s 8:00 am. While most high school kids are either working or sleeping this summer morning, Tylyn is in Rochester at Strong Memorial Hospital getting a Barium Swallow Study done. She hasd fasted since midnight and will have to drink the radioactive liquid and wait another 4-6 hours to eat. She napped on the way there and complained she can’t even sleep during the study. After it is over she will return home only to head off to work at a convenience store a mile from our house. She has worked there since August so the amount of intellectual requirement is little, it is the five hour shift that will bring her home tired at nine and send her directly to bed. Some how I feel that Tylyn’s aspirations of acquiring another job and working more is a moot point right now.

She jabbers of heading off to Darien Lake or swimming in the pool we just got. In addition her summer is already beginning to fill with AP summer assignments including seventy-five AP Calculus problems. She also will be studying for her retake of her SATs. Her first attempt landed her a 1470, a number she and I are both happy with. She is happy with it because it required little studying or SAT course prep and still scored better than her average classmate. I am happy due to it being such a tumultuous spring.

Her next try will be in November. I know this because she wanted to know when our visit to Colorado would be so she could reschedule.

Colorado. Four months and three days. To her it seems like she has time to study later, and for me it can not come soon enough.

When we visit we will actually be at two different hospitals.

The first is at  National Jewish Health and will be seen by Dr. David M Fleischer

Dr. Fleischer is an allergist that works in conjunction with the CH in Aurora Colorado. He has a great understanding of EE & EG and Tylyn will spend the first three days in Colorado in this facility to undergo allergy testing after her initial intake appointment with the allergist, teh GI doctor and a dietician if needed.

Afterwards we will head over to Aurora Colorado to The Children's Hospital In Colorado. There she will be seen by Dr. Glenn Furuta  in an outstanding program they have for patients suffering from Eosinophilic Diseases. For more information about the Gastrointestinal Eosinophil Disease Program click  Here. 

Dr. Furuta has an impressive resume including affiliations with the following professional membership and societies:

American Gastroenterological Association- Member
Chron's and Colitis Foundation of America - Member
International Eosinophil Society - Member
North American Society of Pediatric GI, Heptalogy and Nutrition - Research Committee, Editorial Board

Society of Pediatric Research - Member
The International Gastrointestinal Eosinophil Researchers  - Chairman

Other Helpful Links:

Cincinnati Childrens Hospital

More about Dr. Marc Rothenberg and the program at Cinninnati Children’s Hospital.   

Rare Diseases at National Institute of Health

Families Affected By Eosinophiliac Disorders (FABED)