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.

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.