Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Tuesday, January 10, 2012

Waiting for Results

I received a call Friday morning after having Kara's additional lab work done for her tsh levels. It was from Pediatric Endocrinology at Children's and because of how low Kara's TSH level was, they wanted her in right away. Tuesday morning, the 3rd, we headed over there for yet another appointment with yet another specialist.

This appointment scared me. The doctor explained why we needed to be seen right away, when the normal waiting list is 6-8 weeks out. This was pretty serious. I answered question after question after giving another full life history of Kara, myself and our families. Thank goodness my Mom was there with me!

Did you know that sleeplessness is a sign of hyperthyroidism and other thyroid relaed diseases? And moodiness? Once she started asking the questions, I wasn't sure how to answer. Just the night before I was explaining how hot and cold Kara is with her mood! I told the doctor that she's extremely moody, but how much of it is from being "just two", how much of it is FPIES complications and her just.not.feeling.good, and what if all this really is because of her non-existant TSH? Kara's health history really complicates things! Because of her complex history, the doctor is taking things pretty seriously. We had more blood drawn to test for more labs (SERIOUSLY!) and the doctor explained that if the preliminaries came back looking ok she'd let me know the next few days and we'd have a follow up in three months. If the preliminaries came back looking more complicated, she'd call me this week and we'd go from there. It's Tuesday evening, a week later, and I have heard nothing. I have been a wreck, to say the least, about this lack of news. If the results are not what we wanted, Kara is going to have to go through another round of testing, and I don't even want to know the details of that, at this point.

Today, a week after the appointment, I finally an beginning to process things a little better, but with that, my anxiety is growing. Last week I was sad. My heart just hurt so bad for Kara. I made the comment "What are the chances that one more thing is wrong?", then realizing that we have so many different things going on, and really, what ARE the chances? Lately the odds have been against us, that's for sure!


Well, we called it quits on chicken. It's just too difficult to do a trial when it's a battle to get Kara to eat the food. We have now moved on to our apple re-trial, a food that she is much more likely to eat.
So far there has been nothing out of the ordinary. She's has it about 3 or 4 times now. I'd like to think that if it was going to cause a problem, that we would have seen that problem by now, but we will continue with the trial for the 14 day total. She is loving having apple back in her diet. She has gotten quite sick of potato and sweet potato and doesn't seem to "yike" (like) anything lately! I just hope that apple continues to like her!