Harper's throat problems first started back in July with random vomiting that has progressing to puking a couple times a day. We went to the doctor and he decided to perform a stomach scope, which I posted about before. And like I said before, they found that she has a condition called E.E. or basically a swollen esophagus. This is caused by... well no one really knows. But it makes Harper a puker and the world's pickiest eater!
The G.I. doctor sent us to the Allergy department next, this is due to a not very well studied correlation between food allergies and E.E. And that's where it gets ugly!
We went to the Allergy appointment and everyone seemed not too concerned or worried about little Harper! The doctor acted like this is all old news and just basic procedure and like it was also old news and basic procedure for me too, which unfortunately it is not!
So we were told to go to some random department of the big hospital and get an immensely large amount of blood drawn and use a steroid inhaler and call in 4 months, then we were sent out the door with a sucker in Harper's grubby hand!
Confused about the whole thing and unsure about giving such a little person oral steroids I called my mom of course! She was just as skeptical and got to talking to some people. We learned that the inhaler isn't too bad and probably a good idea. We also learned that Natalie Baum's daughter had pretty much identical symptoms and got some great advice about it all from her. Her daughter was diagnosed with reflux and once they started treating her reflux she improved.
I set up an appointment with another allergist Harper has visited previously to get some more info and shortly after setting the appointment they called to say they no longer accept my insurance. Great! So we decided to start the inhaler anyway and within a few days she made a full recovery! She went from eating practically nothing and barfing 2 times a day to eating reasonable meals and no coughing, sneezing, gagging or barfing! Hooray!
So I waited week after to week to hear about her allergy lab results, convinced they would end up negative anyway. I took her to her well child appointment and the good news was that she is gaining weight and still in the 92nd percentile for height. The bad news was that the allergy test results were on her charts and just glancing at them she had positive results for a number of allergens including egg, wheat, gluten, almond, barley, peas and oats. Just great, I thought, eggs, wheat and gluten are in just about everything and she already only eats a few things. One of those few being her favorite, "Noogetsss" (chicken nuggets) which she loves and contain, of course, wheat! O Boy, well at least there are alternatives for all these things and I can certainly make some wheat free nuggets!
I was also a bit upset that the wonderful allergy department had not called me to give me these results. So, I called them and left a few messages and waited. Eventually I heard from them and the nurse told me the doc recommends avoiding milk and fruit... That came from left field! I told the nurse that the lab results I saw said nothing about milk or fruit and showed high readings for other things. So what the crap is going on!! She tried to explain it to me and realized she had no idea what was going on and told me to just avoid them all... hmmm... very helpful. So I was lost. I called her pediatrician, he said to call the allergist again... I called the allergist that doesn't accept my insurance, willing to pay out of my pocket for an appointment, no can do! I had pretty much had it at this point and was ready to jump out the window!
Instead of jumping I said a little prayer, pleading for some info from someone, and called the allergy department yet again ready now to get dirty and use business talk if necessary. The nurse was, surprisingly and refreshingly, very helpful! She sent a message to an ACTUAL DOCTOR to have them call me with information. The doctor called me and told me that the numbers aren't represented right on the lab report and she really isn't allergic to anything but her peanut allergy that we are already aware of. HALLELUJAH! I was so worried that Harper would be "one of those kids" who is allergic to everything and kind of obnoxious. So here she is now, still advised not to eat fruit or milk but not allergic. I do plan at this point to allow her to eat milk and fruit because I don't think they are the issue. But she will continue with the inhaler and we will talk to her GI doctor about reflux medicine as well. And she will have another scope in 4 months.
I just had to get all this out there, it has been one stressful situation after the other. I wish there was more information and research about E.E. but I am thankful that that is all she has and nothing more serious. She could be blind, deaf, crippled or have cancer. Even though I think the allergy department is fairly incompetent, I am also thankful that there are doctors nearby that do know about the conditon and can help us deal with it. I am praying for good news for the next while though :) Thanks for reading my ridiculously long post!
