And the duck goes QUACK

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

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

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

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

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

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

And might I add here- who gives a shit?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Loading up my arsenal...

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

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

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

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

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

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

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

I’m shocked.

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

Celiac’s (x4)

Crohn’s (x3)

IBS

IBD

RA

Leukemia

Barium Enema

Barium Swallow

HIDA

Ultrasound

CT

IgE Milk RAST

SPT for food allergies

Anti-Islet Ab test

C-Diff

O&P

and countless other’s I have forgotten

Hey guys- how about some patch food intolerance testing?

Grrrr.

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

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

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

Here are the books I am going to try:

Breaking the Viscous Cycle

Healing Foods: Cooking for Celiacs, Colitis & IBS 

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

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

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

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 First Appearance of Symptoms

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Up next: Things get ugly.

The first 2yrs- What it meant then and what it means now.

Tylyn was born March 7^th, 1994 after a pretty uneventful pregnancy and delivery other than a scare when they tried to induce me two days prior.  I had a reaction the medication they had used which has since been pulled from the market. She arrived at 7:45am with strawberry blonde hair. Tylyn was red, wrinkly and weighed 6lbs and 14oz even though she was two weeks late.

Now I’m not going to ramble about the euphoric feelings I had when I saw my child. As a new mother I was pretty clueless about responsibility and too naïve to be scared about what it really meant to be a parent. I was 20 years old and pretty ignorant.

Luckily for me Tylyn, or as I affectionately call her-Ty, was a great baby. She ate like a horse, gaining two pounds in the first two weeks of her life. At five weeks she was sleeping from ten until five without waking and rarely cried or fussed,  a dream baby for any parent.

As she grew older, she always seemed hungry. At two months she only weighed nine pounds. Her pediatrician advised me she was petite and still fell within the growth chart. We decided to supplement her diet with Similac™ as she was not thriving on my breast milk.

This is where it all began. Sure it seems clear to me now, but back then this one chain of events seemed to spiral out of control, leaving me lost and wanting answers.

Two subsequent feedings of Similac™  yielded the same results, passing of blood in her stool. Her pediatrician advised me she might have a milk allergy. We switched her formula to Isomil™.  Being soy based, Ty’s system seemed to process this better, but we still dealt with constant gas and throwing up. It became factual in our family not to handle her too much after a feeding as her breakfast/lunch/dinner might end up on the front of the person holding her.

Still underweight and hungry, we decided to introduce Tylyn to rice. She immediately broke out into hives on her back, arms and face. Later on ice cream would do the same. We would also learn to avoid creams, lotions, perfume or perfumed soaps.

Unhappy with my current pediatrician I took the advice of my summer Chemistry professor at the college I was attending and got a second opinion about Tylyn’s failure to thrive.

Dr. Scagnelli out of Binghamton, NY is a pediatric gastroenterologist, or for those of you without a medical background- a stomach and bowel doctor. Immediately he identified Tylyn with a milk/soy protein allergy. She was placed on Alimentum, a very nasty smelling expensive formula. I am eternally grateful for the WIC program that covered all the costs. It’s hefty price tag was $28 a can and only came in liquid form which would fill four bottles. I am also thankful to CVS pharmacy that was the only place in town other that had a regular supply.

She would continue her formula diet for the first two years of her life. She would hardly ever consume any baby foods and when she did it usually resulted in hives. She was short in stature and small. I rejoiced the day I could turn the car seat forward, by law in NY state one year or twenty pounds. Tylyn was a year when her car seat made the switch; she did not break 20 pounds until 15 months, two months after she was walking.    

 Above: Tylyn at 15 months

The early years were pretty uneventful aside from her very regular doctor’s appointments and medications for ear infections that landed her regularly in the ER because at that time there was no outpatient clinic on the weekend.

She would never cry, fail to sleep, get a fever or pull at her ear. Quite simply when she had an ear infection she got diarrhea. They claimed it was her diet but she only drank the formula. I wonder now if they were right despite the Ceclor making the ear infection and ultimately the loose stools disappear. The doctor’s treated her with the Ceclor instead of penicillin due to me and her father being allergic to penicillin. They thought as a precaution they shouldn’t introduce her to other potential allergens.

I’m not sure any of those precautions helped or would ultimately hide the trouble that would take 15 more years to discover.

Up Next: Years 2-10 The quieter ones