Send In Reinforcements

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

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

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

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

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

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

So why is this worth a blog?

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

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

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

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

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

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

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

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

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

Sigh.

Will this ever stop?

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

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

Itchy and Scratchy

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

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

Grinding up foods on my lunch hour

For fruits I had chosen:

Apples

Bananas

Strawberries

Blackberries

Raspberries

Blueberries

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

Peanuts

Oats

Sesame seeds

Almonds

Sunflower seeds

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



Food Samples for APT testing



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

Wheat Flour

Rice Flour

Milk Powder

Cornmeal

Soy

Egg White

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

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

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

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

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

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

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

And the duck goes QUACK

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

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

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

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

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

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

And might I add here- who gives a shit?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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 Testing Continues

April 2011

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

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

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

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

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

May 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I was wrong.

June 2011

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

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

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

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

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

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

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

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

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

Above: Tylyn at Prom

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