Ian had an allergist appointment this morning, which was his first in 13 months. The reason for the long gap was because the psychologist didn't want us to attempt to reintroduce any foods to Ian for one year. The local allergist he had seen before had left the practice a couple of months ago, but we had actually met the allergist today once before as she had been the one to read the results of Ian's patch testing that was done in December 2011. I found out today that she follows CHOP's (Children's Hospital of Philadelphia) protocol for Eosinophilic Esophagitis. That is not good in my opinion because their protocol involves on average more than 10 endoscopies per child. The allergist we started taking Ian to in February 2011 believes in trying to have as few endoscopies as possible (2-3 is his goal). He believes that if there aren't any symptoms (in Ian's case projectile vomiting), we can safely assume that his esophagus is fine, and we don't need a biopsy (EGD) to prove it. Today's allergist showed me a long list of foods and asked me what foods he was eating when he had the last biopsy (August 2011). I don't recall exactly what he was eating back then so I just said the foods from the list that he's never eaten. Although I told her that baked eggs had been added in after that last biopsy. She was very surprised that wheat had never been eliminated. I kept telling her that we only eliminated milk, soy, peanuts, and eggs.
She wants another EGD done as soon as possible. He now has a GI appt scheduled for next month. If it's all clear she wants us to introduce another food (ex. spinach). We have another appointment scheduled with her and a dietician in April. She said at that time she'd retest him for peanut and egg allergies (prick testing), and if he didn't test positive, we could introduce one of those into his diet (straight eggs rather than baked eggs). Then this process of biopsy, introduce food, biopsy would be repeated over and over and over again. I don't think so. Some of the foods on the list I never have served in my life. Why does he need to eat them and have a surgery to prove he can eat shellfish or avocados? I serve tuna and fish but not shellfish. Neither Paul or I like shrimp or crab or lamb or avocados. I've had those foods before, but I don't care for them. She acted shocked that I don't eat hummus. Oi vey. If anesthesia wasn't involved, I wouldn't be as upset about these biopsies. Ian was under anesthesia 4 times between 10-20 months old. I realize that the EGD's were MUCH shorter than the urological surgeries (10 minutes versus 3 hours). The pre-op and post-op time in the hospital is MUCH longer than the actual surgery. Things can go wrong just from anesthesia. I speak from experience. My lungs collapsed, and I ended up in the ICU due to anesthesia (the surgery was aborted). I do not want my kids to have a surgery unless it is absolutely necessary. I know that Oliver will need a urological surgery this year, but I was really hoping that would be the only surgery for our family in 2013. Ian and I each had one surgery in 2010. Ian had three surgeries in 2011, and I entered the OR three times in 2012. Nadia and Paul have never had a surgery in their entire lives.
In her battery of questions that she asked me, she asked about pets. I told her that we don't have any, but that he seems to be allergic to cats as shown by his reaction at my parents' house. I said the prick testing said he wasn't allergic to cats, but I don't think that was accurate. She said that prick testing often isn't very accurate before a child turns two. What?!? Prick testing is the SOLE reason we've been eliminating eggs and peanuts from his diet for 23 months, but it's not very accurate? I know he was (and possibly still is) allergic to milk and soy protein, but I am not convinced he was ever allergic to peanuts or eggs.
This is our last week on Blue Shield insurance (for now anyhow - who knows what insurance Paul will have once he gets a job in chemistry). We'll be without any insurance for four days next week, and then we'll go on Geisinger insurance (an HMO) on February first through Paul's dad's company. So the only pediatric allergist that our insurance will cover starting 2/1 is the one we saw today. The one we first took Ian to (back when we had PSU insurance which Geisinger doesn't accept) is 2.5 hours away from our house, but I'd rather drive that far if it means avoiding multiple surgeries. I called today and asked if there was ANY way we could see Dr. Anolik (the head of the group) this week. I'll be taking Ian out there on Thursday. I'm praying he'll do the prick testing for eggs and peanuts, and I'm hoping he'll allow us to go back to what we had been doing in the fall of 2011 where I would call his nurse once every 2-3 weeks, she would report to the doctor what I said, and then she would call and tell me what he said to do next. Even if we have to drive down there periodically (5 hours round trip) and pay cash to see him, it will be worth it to me if it means we avoid having a surgery every 2-3 months.
The allergist also suggested I should take Ian to see a neurosurgeon because his forehead isn't as flat as it should be. She asked me if he had developmental delays (aside from eating - no), if there was inadequate amniotic fluid during his pregnancy, etc. I was very surprised because no doctor has ever mentioned this before, and Ian has seen SO many doctors over the past 3 years in the NICU, at the Pediatrician's, at CHOP (urology, GI, ENT, and cardiology), Hershey (GI and psychology), and other doctors at Geisinger (urology, allergy). The next time I take Oliver to the pediatrician's office, I'm going to ask them about whether they think I should take Ian to see a neurologist or not.
After this overwhelming appointment, I made a quick stop at the consignment shop that is just a few minutes from the hospital. I had gotten a $50 gift certificate for $25 earlier this month. I used $35 of it today to buy two dresses for Nadia (one of them is super fancy and she loves it), one sleeper for Oliver, and a few outfits for Oliver (such as a Gymboree sweater and corduroy pants). They were doing triple punches on their punch cards today so my purchase resulted in me earning a $10 gift certificate so for $25 I'll be able to spend $60 at the consignment shop, and of course their original prices are much lower than retail stores, and some of the things I bought were new with tags! One thing I haven't gotten yet is a suit for Oliver to wear for Easter. I kept all of Ian's suits, but I didn't get him a suit in size 3-6 month because he wore that size in the summer. I wanted to get a suit for Oliver at the mall this past Saturday, but that didn't happen. I am going to make sure to get one this Saturday. We'll be at a different mall this Saturday because Nadia's ballet class is performing there. Even if I have to pay more than I usually pay for suits, I'm going to buy one for Oliver.
Paul went to school today to try to start wrapping things up - cleaning out his office, cleaning up the space he has been using on their servers, approving the proof of the journal article, making a few edits to his dissertation, submitting paperwork regarding graduation, etc. He also treated two research groups to lunch (a tradition they have). Thankfully that wasn't as expensive as I feared it might be. His advisor also wants him to start writing another article based on his dissertation research. He's going back in tomorrow and planning to start working for his dad on Wednesday. We found out today that he is getting paid next week. Earlier we thought his last check was the end of December (he gets paid once a month), but it turns out he's getting one more check.
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