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.

Saturday, November 19, 2011

Two Years Ago

We will be heading up to work the fire departments turkey bingo very soon and it's this day that once again, is bringing me back to day one of our FPIES journey. Sadly, not much has changed and we've actually gone backwards from where we were a year ago but Kara has been happy today, absolutely full of spunk and energy and is looking better than she has in months lately! We have learned so much and continue to learn more with each day about what is going on with her body. Sometimes its one day at a time but thankfully, she is thriving.

Please read last years post to see the first reaction and where we were at both one and two years ago. Today is bittersweet.


Kara has a food! We continued our food trial for a good 16-17 days until we felt comfortable saying it was a pass. She loves potatoes and they seemed to love her too! She does have tummy pain here and there but I believe that is related to the eosinophilc colitis, simply causing her pain because everything that comes out of her is consistent with her baseline! :)

The other night we were ready to start something else, as Kara was getting pretty tired of potato every single day. I had some pureed sweet potatoes in the house so we went ahead with those as our next food trial. She's loving them and we are on day four of them and so far, they seem to be agreeing. My thought process as the what food to try next went from one food to the next, with no real rhyme or reason and sweet potatoes wasn't even one I was considering. I'm not real sure what happened, in a weak moment, I just decided we should go for it! I watched the clock that night like a hawk. Each little burp and fuss I questioned but Kara slept through the night that night! We'll do at least 14 days of this trial as well, which is good - hopefully I'll have done a little more prepping in the "what shall we try next" list!


Last week, while down at Mayo, I received the much anticipated phone call from Kara's Children's GI Doctor. The news we received has pretty much left me at a loss of words on so many levels.

We found out that Kara's esophagus showed mild, but chonic esophagitis, consistent with that of reflux. The plan for this? A trial of preferably Prilosec, but Zantac would be ok too. I discussed how we'd trialed Prilosec in the past but Kara didn't seem to tolerate it very well. I said, at the time, that I was ok with trialing it again since we have both at home in the cabinet. Since then, I chickened out, and we are doing Zantac. At least until we can get in and see the doctor and discuss all of these findings and a plan for the upcoming months.

The middle parts of the scope were clear, in fact, looked great. It was the bottom half, the results of the sigmoidoscopy, that has put me in this pretty much silence as I try and process what has happened in the past, where we are at presently, and what is to come in the future. Kara's biopsies show Eosinophilic Colitis. I can't get a good handle on what this means, however, this is what we were supposed to be RULING OUT. This is exactly what I had in mind all those months when I begged and pleaded with the doctors at the U of MN to please scope my child so we can rule out every possibility of why she was having so much pain. All those months, they neglected to listen to me, neglected to take me seriously, neglected to take care of my child, other than pumping her full of fluids and then sending her home.

As each day passes, I'm reading a little more about this, trying to understand it. On Monday sometime, her GI doctor will be calling me to hopefully help me with these results a little further. Kara also has an appointment with the GI Nurse Practitioner on Wednesday so we will further develop a plan. Until then, we are just taking things day by day trying to get a handle on these newest findings.

Friday, November 11, 2011

Mayo GI

We have been way too busy the past couple of weeks with way too much travelling. This week brought a week down at the Mayo Clinic for an additional set of eyes on Kara, since we've had so much trouble with finding a reliable GI doctor in the past. We were unsure of how our new GI team was going to be so with our family doctor, decided to keep these Mayo appointments since they were scheduled two months ago!

Monday afternoon Kara, Grandma Cindy (Brian's Mom) and I headed to Rochester, a four hour drive south of us, for the week. She had an early Tuesday morning appointment with a GI doctor and a Thursday noon appointment with allergy.

Tuesday morning, we arrived at GI and I was very impressed with Dr. Grothe, who understood exactly why we were there and had the same questions I did as far as why the U of MN did things the way they did and why they failed to scope Kara despite months of her being in pain, having symptoms, and us basically begging them to, along with our allergist. I let Dr. Grothe know that we had very recent luck in finding a new GI team, and she was just recently scoped, yet we didnt' have biopsy results back yet. It was very relieving to know that Dr. Grothe was on the same page as we were, as far as wondering what the heck was going on in the thinking of the care we received at the U, and that she would have done things the same as Children's (New GI team) had done. We heard basically the same things that we already knew, Kara is growing and doing ok on the formula, and unfortunately, there is not much else we can do right now, but she was very interested in hearing how the biopsy results came out. She gave me her email and requested I email her the results as well as let her know if we had any questions.

We got our foot in the door, so if Kara needs additional care, from what Children's can give us, we will have Dr. Grothe available, which is a relief, despite it being so far away. It is still closer than Cincinnati is, and we are still on a stand still with them, waiting to see if we need to go or not. I was trying to stay positive that Kara's scope LOOKED ok, from the human eye but reminding myself that the biopsies will be the true test of what we have to come.

The Scope

Last Thursday Brian, Kara and I headed to Minneapolis to prepare for Kara's EGD and Sigmoidoscopy the next day at Children's Hospital. Her procedure was scheduled for 12:15 with a 10:45 arrival time which meant no formula from 4:45 on. We figured it was going to be a long mornng, which it was.

Kara woke up at 3:30 for a bottle which is about her usual time, then went back to sleep. When she awoke for the day, around 8:00, she was not a happy camper about not getting anything to drink! We fought this battle pretty continuous until they took her back for her procedure!

We arrived at Children's and were visited by many members of the surgical team. With each person, we discussed Kara's past anesthesia history to make sure everyone was aware. We signed paperwork to have additional records faxed over before the procedure and spoke at length with the GI, Anesthesiologist Nurse Anesthesist. The plan was to do the procedure with as little meds as possible since we are still unsure of what caused her scary cardiac reactions last year.

Kara ended up napping and woke up right before they were ready to take her back. I was able to carry her back to the OR again and hold her in my arms as they put the mask on her to put her to sleep. She wasn't happy and was fighting it with screaming, which only makes the medicine work better! Within seconds, she was sound asleep and I was on my way back to wait. Thirty minutes later, Dr. Aru met with us to let us know that our girl is just as cute on the inside as she is on the out! He said her insides looked good, meaning there was no visible inflammation but final results would be pending the biopsies. He explained how difficult FPIES is but again, we are doing everything we can possibly do for Kara right now, despite how frustrating the process is right now.

Kara's heart behaved itself with her pulse not rising above 150. Quite the acheivement, considering after her first scope she was in the 200's while sleeping! I rocked her and tried to console her, watching those monitors like a hawk, but she continued to do just fine, impressing everyone. The recovery went well and despite thinking we were going to have at least a one, if not two day stay after the procedure, we were on our way home at 3:00!!! We were told we'd be called later in the week with the biopsy results.

Tuesday, November 8, 2011

The Benefit

Saturday, October 29th, some of the most amazing friends and family we could ask for held a benefit for Kara and our family. The response received surpassed all expectations as our small communities came together in support. With the help and direction of two wonderful women, our fire department, which Brian is a seven year member of, and auxilliary, this event included a silent auction, bake sale, raffle, and spaghetti dinner.

The funds we received from this benefit have taken a huge weight off of our shoulders as we are able to pay off the last two years of maxing deductibles and out of pockets, traveling expenses since Kara's specialists are all two and a half hours away, and covering daily expenses since my days home with her seem to be increasing more and more lately!

The timing of this event was wonderful as Kara went back on her elemental diet and failed her first food re-trial. What we have in our small, wonderful community is more support than we ever could have asked for.