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.

Sunday, May 1, 2011

Ear, Nose and Throat

Tuesday was our long-awaited ENT Appointment. At Kara's Allergy Appointment on Monday the Allergist said that Kara did have some fluid in her right ear. I was REALLY thinking and hoping that this extra day off, day spent in the cities at another appointment was going to be nothing but a waste of time since she's been ear-problem free for a little over a month! This was not really what I wanted to hear but at least the big appointment was just the next day.

We got to the U of MN and checked Kara in for her Audiology Appointment. They did a hearing test and then another test to measure the fluid amounts in her ears. The hearing test is NOT the easiest test to do on an almost two year old! She had me a little worried because I could clearly hear some of the noises they were playing and Kara wasn't responding by the end of the test - the whispers and things like that. The Audiologist assured me that she did perfect in the beginning, but in true two-year-old fashion, quit playing the game about half way through!

With that, waited for our ENT appointment. We seemed to have to wait for an awful long time and Kara was getting very impatient, not to mention, tired! We settled on a bottle about the time the resident came in. She took Kara's full history, finding it interesting and asking many questions. She did a quick exam, finding the fluid in both ears and went to get the doctor.

We spoke about Kara's ear fluid and infections that's been a constant since about December. He said she is definitely right at the point of making a decision on getting tubes put in, but we could wait it out another month or so to see if she does get better with the weather. Brian and I discussed ahead of time that we would at least ask him about Kara's adenoids. Brenna, Kara's older sister, had her tonsils and adenoids out when she was two years, four months old, a big decision that we had to make but since making it, she hasn't been sick a single time. He was curious as to why we did hers so early and when we described what the ENT told us after Brenna's procedure, he checked her throat out as well. He decided that he would do tubes and adenoids for sure and then we went on to talk about her mouth breathing, snoring, basically all the same problems Brenna had except for the chronic tonsillitis. This is where the conversation got confusing, and a bit overwhelming.

This is what's going on:
If we are going to put Kara  under anesthesia again, we should find out for sure if her breathing is causing sleep apnea and get those tonsils out right away as well if she is having sleep apnea. If we don't do this, there's a good chance that in the next six months or so she could need to have them out which would mean putting her under anesthesia again. We are waiting on the scheduling of a sleep study at this point, which we will hopefully hear on tomorrow so we can get these things on our calendar. The sleep study will be done at Gillette Children's, as this is one of the things they specialize in. (When we are finished with all of this FPIES business, I swear, we will have been at every hospital/clinic in the metro!)

For those of you that weren't following last October, Kara's scope caused a reaction of some sort, and because of this, she's a high anesthesia risk. This is why this non-invasive procedure is being taken so serious and we are doctoring at the U of M for this as well. These are the blog posts about that experience: Phase 2, Inpatient, as well as a few others in the October 2010 blog archives. Basically, after all of this, Kara had a Holter Monitor, a Cardiology Visit, another EKG and we still don't know exactly what happened. To be on the safe side, when Kara has her ear tubes placed as well as whatever else is decided, she will have prophylactic steroids to (hopefully!) offset any chance of reaction as well as be admitted to inpatient upon the surgery so we aren't hanging around in Phase Two again, wondering what the heck is happening.

It looks like May is going to be a busy month. I'm ready to get the show on the road so we can enjoy this summer!  

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