Immunology has me so confused. I learned a lot yesterday and it has my mind spinning. IgE, IgA, IgG, IgM,P,Q,H...It's not that bad but might as well be. We learned that Kara's IgE levels are high, which is completely expected. She's a "highly allergic" child based on how sensitive her skin is, our struggles with eczema despite the treatments we do, and her dairy allergy. The IgG (please correct me if I'm wrong) is more to do with the FPIES part of things but as the doctor explained to me yesterday, this is what is "believed" but since so little is known about FPIES, there's no for sure anything! All of her levels were off in one way or another, again to be expected just from what we knew about Kara based on her medical history, but the IgA one is the one that was most concerning. The IgA level was very low which completely explains why Kara gets SO sick when she gets sick and gets sick OFTEN. She doesn't have much of a fighting mechanism in her at all. The Immunologist wasn't the least bit surprised to hear how quick illness hits her, as I explained how sick she got in the matter of a few hours that put her in the hospital. She scoured over pages and pages of medical records - office notes, ER and hospital records and layed all of her past labs out in chronological order trying to make some sense out of what her blood is doing when she is sick.
I started explaining Kara's tummy aches and while I was doing this Kara was an embarrassing, naughty little girl. She was on my lap, screaming "MOM" in my face, just being completely obnoxiously two years old. I would calmly get her to focus on me so I could keep talking with the doctor and at one point apologized "I'm so sorry, I don't know WHAT is going on with her, she's usually such a happy girl and the perfect patient!" At that point, Kara actually HIT ME as I was talking to the doctor and not her! I swear I could feel the residents eyes of horror on me as the doctor asked her to go get the Duplos for her to play with. Those distracted Kara for a little while so we could continue with the appointment. Kara had started having gas at this point and it was SMELLY! She had a tummy ache - no wonder she was being so naughty! She started with the gas and followed with one of the nastiest diapers I've changed in a while, that could have cleared a room, only the doctor was actually pretty thrilled that she did this! "Perfect! Let's take a look!" We collected a sample and with that she ran loads more of the stool tests. She sent me home with an order for some additional labs. She was shocked that no one has tested for c-diff, giardi, and a bunch of others. She said they'll probably be negative but how wonderful (Wonderful?! In an odd way, I guess!) it would be if that was all (again, ALL?) that it was!
We are going to wait for these labs to come back and if they show nothing then I think that will be reason enough for another GI workup. She explained that because of the low IgA Kara is going to be so much more susceptible to getting sick and because of that, there are many precautions we'll have to take, especially as winter comes. She'll be calling me when she receives some more of the lab results back and we'll go from there. it was a good appointment and there is so much more to it but I can't get what's processed in my head down at all!
Today we saw Kara's family doctor for her hospital follow up. We talked about her hospital stay and how we can start at our hometown hospital and be admitted and go from there - that it's not necessary to be transferred to the U since they didn't do anything for us there that couldn't be done here. We went over all of her labs from the last two weeks. We talked about her Immunology appointment yesterday and what measures we can take this winter to help keep her healthy. (NO DAYCARE, in a perfect world, but understands that it is necessary.) I asked if she'd have any pull with our GI doctor as far as getting another scope and she said she doubts it but if all these stool tests come back ok than it will probably be necessary. We talked about the lack of communication between her specialists and how I feel like there is more going on, and I think it was agreed but that we can't seem to get anywhere.
We have lots to think about and my mind is absolutely fried with all of this information. We have lab results that we are now waiting on and some decisions to make. I hate this game.
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