Thursday, May 23, 2013

More on The BIG Appointment

Like I said, I was so anxious to blog about our appointment yesterday, that I left out a lot of info.  I still feel a little overwhelmed with all the information we got yesterday, but in a good way.

I first, want to thank a friend of mine, who works as a child life specialist at Texas Children's.  She was not on the schedule for yesterday, but made sure to send one of her colleagues over to check on Rapunzel.  Child life specialists work with the kids to help reduce their anxiety and help them cope with anything in the appointment that might be scary or overwhelming for them.  We met with a wonderful specialist, but Rapunzel was doing SO well, that she didn't even need to stay!  I couldn't believe it!  I just knew that Rapunzel's anxiety would be high and that we'd need all the help we can get, but she just keeps on surprising me!  The specialist assured us that she'd be around and if we felt like we needed her to come back, to just let one of the staff now, and she'd be over.  We never needed to call her back, but it's so great to know that they're there if you need them!

When we were talking about epi-pens, we realized that Rapunzel is right on the borderline of needing to move up from the epi-pen Jr. to the regular epi-pen.  So because we were getting a new prescription (to have both on hand for her), we had to go through the epi-pen training again, which was fine.  Someone brought in a little video for us to watch and a couple of the trainer epi-pens.  She asked Rapunzel if she'd ever played with one before and Rapunzel got a horrified look on her face and said NO!  Then she tossed it to her and Rapunzel about jumped off the table to get away from it.  She didn't realize it was just the trainer and not a real epi-pen and I've emphasized to them many times that we don't play with the epi-pens! LOL  I guess that sunk in, which is good, but it was hilarious to watch her reaction to that!

So, some of the things we talked about with the dr. yesterday were, Rapunzel's allergy testing results.  We went over her positive tests and also anything else we had eliminated and things we were suspicious of.  We explained that she's tested positive for corn, soy, peanuts, peas, and oranges, and that we also avoid all tree nuts because of her sister's allergy.  We told her about our separate gluten and dairy elimination diets, and how we didn't notice any improvement in her skin from their removal.  And we told her that we were slightly suspicious of shellfish because of a possible small skin reaction she may have had after eating shrimp (we aren't sure if it was the shrimp, or just a typical flare).  So she ordered specific IgE levels for corn, soy, peanuts, tree nuts, pea, orange, fish, and shellfish.  This will let us know better if she is truly allergic to any of these things, and we may perhaps be able to add some of it back into her diet.  She also ordered a total IgE to compare to the two previous labs she's had done.  Normal IgE is typically under 600.  In February her IgE was 3200.  A month later in March, it was 8200.  She wants to see if that was a flare, or if it is steadily increasing.  That will help her to narrow down some options.

Some other things we talked about were genetic mutations.  There is a filaggrin gene that she wants to look at.  And we also mentioned to her my MTHFR disorder, which can sometimes cause skin issues, we've read.  So she will be testing her for those things, and several other genes that she was not too specific about at the appt.  We will be doing that at our next appt. though because we couldn't do too much at once, since everything requires a certain amount of blood sample.

She also told us that she had a few ideas of things that we might can look into depending on some of these results.  Again, she wasn't too specific yet, but said there were things that only their office does, which made me even more confident in our decision to get our appt. there.

I told her that I appreciated her looking into all these other avenues.  We weren't satisfied with just simply treating the eczema.  We may never know what's causing it, but I won't be satisfied until every stone is turned and we've exhausted looking into anything that may be causing it.  If there is anyway that we control the source, then I want to do it.  Anything to help the quality of life of our sweet girl!

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