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.

Second isn't so bad.

Less than one week until Tylyn’s allergy appointment and patch testing.

I am as excited as a kid at Christmas. She is not fairing as well due to being off the Zyrtec and her allergies in full gear this morning. Granted I also had a bit of a scare yesterday when I called the Allergist to ask whether she can continue her steroid inhalers and the nurse was dazed when I asked what food allergies they would test for next week.

“We only test for environmental allergies. “ She corrected.

“What do you mean? “ Was my reply even though I knew exactly what it meant.

“Chemicals, you know like what one would see in perfumes and stuff. “

“I see. “ And I did. But I didn’t agree with it. I hardly think Tylyn is suffering from chronic diarrhea due to her hairspray. I tried to think quickly, “Well, I guess we could start with that testing but Dr. S had mentioned getting some chicken from CHOP. “

A chart reference indicated no note. The nurse offered to do skin prick testing for foods.

I proceeded to explain about IgE mediated and non IgE mediate responses and the importance of food patch testing. The line was silent, followed by a quick, “I’ll have the doctor call you. “

Sure enough, despite Dr. S being on vacation, another on call doctor, Dr. A gets a hold of me less than two hours later.

He clarified they did do food testing, he actually bought all the kits and even though they don’t get a lot of requests for it, they have done it. He explains it is very technique dependent and the skin prick test is better. I immediately explain the IgE spiel all over again only to have him ask did Tylyn have a diagnosis. I conveyed about EE & EGE. He interrupts partially through and quickly agrees, “Yes, of course the SPT and even the RAST test aren’t the best tests for that. “

For the first time in months I listen to a doctor agree that we do need to do patch testing and although there maybe few hits, it may provide relief if we can identify a few triggers for Tylyn. He is sympathetic that Tylyn is entering in her senior year and understands why I want to explore this as much as possible, sooner rather than later.

Dr. A also mentions that some people with EE & EGE don’t have any food triggers at all. He then recommends possibly doing rounds of allergy shots that some people have benefited from.

Dr. A inquires how she has responded to steroids (negatively) asks if she is on anything now and clucks his tongue when I tell him what she is on and her latest symptom. He reassures me they test for several types of wheat and does not belittle me for referencing the internet about the “cornmeal” search and results. He sees me as a concerned parent and recognizes that I am using him as a tool and a resource to make my child better.

He also wants to know what Tylyn is on for the Eosinophilic Esophagitis. He is perplexed when I tell him nothing. He wants to know if she is having problems swallowing and if she is having pain. Yes to both. He then states that if her doctor’s aren’t going to treat her, then they need to explore changing her diet.  

Now mind you this is much different that her GI doctor. A phone call to him yielded a monotone voicemail that said, “This is Dr G. I don’t know why Tylyn’s stool looks like cornmeal or sand. I will have my secretary write a note that Tylyn needs to see a special clinic. I hope the Pentasa is working. Talk to you later.”

You’ve got to be kidding me. Yes, I believe my concern about the stool, the color, the consistency, the burning and the increased bowel movements along with abdominal pain shows that the Pentasa is working GREAT! I guess the exhaustion is good sign too.

Idiot.

That would be the PG version of my thoughts about him.

So as I sat and stewed about his apparent lack of motivation to help Tylyn, once again I’m changing it up.

First thing I did was got on the internet. Twenty minutes later I have an appointment booked with a new GI and a referral on its way.

Go me. Team Tylyn 5, bad doctors 1. Yes, I do give credit for Dr. G recognizing the furrows before the biopsy coming back.

So the new appointment is the 15^th, but the secretary has already talked to the NP about trying to get her in early, we are just waiting for the okay from the new doctor.

I am elated. Not only the secretary is nice (imagine that) they are also a group that has several GI’s but we will be seeing a Pediatric GI. I explain in a rush that I want to see if they can help Tylyn and we are also scheduled for a trip to Denver to a specialty clinic but her current GI is taking a hand off approach.

I hold my breath and wait and the woman asks when our trip is.

I respond November.

With a smile in her voice she says, “Well we have a lot of time before then to help her out don’t we. “

I have no response. None and as many of you know I am rarely speechless. She apologizes for not having anything before mid August but encourages me to call back daily, even twice a day and she will work on her end getting her in sooner. It is a much different approach than her regular GI doctor who has pushed back her follow up.

My sister assures me it is because it’s a pediatric doctor. No matter the reason I’m a bit relieved. We will be going to a doctor that is affiliated with The Women and Children’s Hospital.  Both Dr. Baker's (a husband and wife team) have outstanding creditials including a PhD from MIT.

It would be great if the second opinions yield a few breakthroughs, as a matter of fact yesterday was the first time I heard from two different doctors, “Perhaps we can prevent you from going to Denver.”

I’m not sure if it will, but at least there is a bit of optimism, hope and dedication to at least trying. That’s all I can ask for.

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.

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!

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)

 

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

Up Next: About the facility