First, let me encourage all of my faithful readers... You're close! You're sooooo close to being caught up to present day in our saga and then, I promise, my posts will get shorter. I think. I mean, why wouldn't they? And, after all, no one is forcing you to read this. Seriously, only five of you are even officially blog 'followers' so it's not even like I'm crowding your inbox. Jeez. Really.
Anyhow... I'm not going to recap this time, I'm going to jump right in. We were heading to an allergist. How did we find one? How did we get in so fast? By now, you should know the answer. Yup, Wonder Woman did it again. We should send her and her staff a Christmas gift or chocolates or maybe magic lassos. Didn’t Wonder Woman have a magic lasso? Don’t think we can afford to give away invisible planes….
July 12, 3 p.m. Another hospital. Another doctor. But this time, we weren't asking for a diagnosis. This doctor knew FPIES, knew we were coming, knew we were suspecting FPIES and had heard Ginny's story in all it's glory from Wonder Woman. He reviewed her medical history and checked her out. By now, the crazy rash had taken it's leave but had been replaced by our old friend, eczema. We started by discussing the eczema: It could be related to allergies or could exist all on its own. We may never know. Either way, 0.5% hydrocortizone as needed and Eucerin every day should make a difference. No problem. We could do that.
And the FPIES? We discussed it at length, talking all about an allergy vs. a food intolerance. About this, he was very knowledgeable. Furthermore, he agreed that G had FPIES. He could think of no other diagnosis but FPIES that accounted for her dramatic medical history. I let him know that as of dinner on 7/1, I had been dairy and egg free. He suggested I remove additional major allergy triggers from my diet - soy, rice, oats and wheat in addition to the dairy and eggs. "Because allergic reactions can happen via breast milk, right?" I asked. I assumed I would avoid all of these foods until we had G allergy tested. No... He wanted me to remove these because FPIES reactions can happen via breast milk. I told him that we had read differently. He promised to check into it. He continued... I was to remove these items from my diet, avoid feeding them to G and start with something safe, like green beans. Wait, what? Yeah, he said green beans. So I asked, "I thought that legumes were a common FPIES trigger food family, like poultry." No... He had never heard of kids reacting to those foods, but again, he promised to check into it. So, would he do patch testing? We had found at least one study online and lots of chat from moms claiming that doctors were having success predicting FPIES triggers using patch tests. No... He told us that the results of patch tests are often inconclusive and that food intolerances cannot be determined via testing like true allergies. Fine. We reviewed my dietary restrictions again, set up an appointment to come in the following week to do food allergy testing and were on our way.
What is there to say? Another doctor who was supposed to be familiar with FPIES but knew a little less than we did. After the other two doctor visits I was worked up. After this, I felt defeated. So often, as I type and am remembering these things, my eyes tear up. I never expected to have to 'fight' for my kid like this. I never expected we'd feel so alone in our battle, even as we were surrounded by doctors who were supposed to help us keep our child healthy.
When the phone rang a few days later, the last thing I expected was to hear from this doctor again. Remember how he said he'd check into things? He actually did. He admitted he was wrong. FPIES isn’t transmitted via breast milk so I could go back to eating anything I wanted. Legumes and poultry are big triggers, so don't try to feed G those. Okay, this was progress. So, it was with a little bit of a lighter heart that I anticipated our next visit. A lighter heart - and a happier belly. Those few days without... well, without everything but meat, fruit and veggies had left me feeling pretty empty.
I happily dove back into oatmeal and rice and tortillas and pasta - but continued to avoid the dairy and eggs. Since having removed them from my diet on 7/1, I felt I saw a real change in Ginny. (Just for the record though, John wasn’t necessarily on this band wagon.) She was rash free. My mom noted that G seemed happier and I concurred. I could set her down and she would play or roll or crawl instead of just screaming. My Grandpa was thrilled because G was finally happy to sit on his lap instead of yelling and reaching for me. And she was sleeping – nowhere near ‘through the night,’ but longer naps and longer stretches at night. I didn't add dairy or eggs back in because I really liked my happier kid.
The phone call from the allergist kinda turned the tide for me. I realized that I didn't need him to be an FPIES expert. I needed him to be a good allergist at the least and, should he be willing to learn more about FPIES on our behalf, that would be even better. And I believe he is a good allergist. So, we returned... and I was prepared.
July 19, 4:00 p.m. Poor poor allergist and poor poor allergist's staff. We arrived and the nurse pulled out all the tools to test G for environmental allergies. Apparently, they always test for these first. I told her that we would be testing for food allergies first. I probably could've been nicer about it but I already had my gloves on, ready to fight. At some point during the past week I had decided to take charge of this FPIES drama. This doctor had already done some additional research on our behalf and I felt that was very promising. I was intending to push him. Would he be the allergist on our team? I was going to find out.
I objected to the nurse's testing plans. I told her that I wanted to know which foods G was reacting to so I could remove the offenders from my diet. She had to run the change in plans by the doctor. He agreed to let me have my way. The nurse had to start her preparations all over again. 47 scratches for 47 different foods and 15 - 20 minutes in the waiting room before the nurse would read the results. I found out only then that the plan was for her to measure the results, and we wouldn't meet with the doctor until the following week to learn results of the food and environmentals all at once. Now let's take a poll.... Do you think I sat quietly in the waiting room as directed? Raise your hand if you seriously believe I sat and quietly waited for the nurse to return. No one? Yeah, like I said, I had my gloves on, ready for a fight this time. I did at least return to the waiting room (passing right by the doctor at his desk), but walked immediately to the reception desk to ask if it might be at all possible to see the doctor that day. He met me at the front desk to invite us back to his office. Somehow, I felt slightly embarrassed, a little guilty and very excited all at once.
He knew who we were and we dove right into the FPIES discussion. He did say one or two small things that had my FPIES misinformation radar in a tizzy, but I stayed focused and presented him with my research: A study on patch testing for FPIES triggers done by staff at the Children’s Hospital of Philadelphia (CHOP). First, he checked the credentials and verified that this was done by big name doctors at CHOP, doctors whose names are known throughout the field, and then he continued reading. You can read the link to the study yourself but, basically, using patch testing, these doctors are correctly predicting major FPIES triggers 28 out of 33 times. And the 5 times they’re wrong are false positives. I could certainly cut MORE out of G’s diet than I need to if we could avoid as many reactions as possible. Patch testing involves taking some of the allergen and placing it directly onto the skin and leaving it there for somewhere between 24 and 72 hours and then gauging the response. He was absolutely intrigued and impressed by the study, but admitted that he would need more information to proceed. How did they do this with milk? What form of soy did they use? And guess what?! He offered to try to contact these doctors to see if they would share their methodology and, if so, would repeat it for us. As I type this, my heart soars again. If he’s successful in getting this information and performing these tests, he is SO on our team. If he’s successful, he will absolutely get a nickname too. Mr. Incredible has a nice ring to it, doesn’t it?
And the good news didn’t stop there. Prior to finishing our discussion with the doctor, Ginny’s tests results were measured and the doctor reviewed them with us. Negative. All negative. 47 foods that barely registered on the reaction scale. I will admit that I was surprised, but THRILLED. This meant that I could eat anything I wanted – oh yeah, and that meant we were in great shape to better gauge Ginny’s reactions as we worked on food trials.
We marched out the door with another appointment on the calendar, a smiling baby and the first bit of success we’ve had since this began. We marched out the door and headed straight to Chicago Pizza and Oven Grinder to eat with my Mom, Sister, Niece, Nephew and Grandpa who were all in town. That’s right, I was going to eat some pizza and it was going to be gooooood. Maybe I’d follow it up with some ice cream for dessert!
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