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, October 22, 2011

Losing Hope

On Wednesday I left a message for Kara's doctor to call me. Kara is looking very pale (had somewhat concerning iron levels a few months ago that we were going to keep an eye on) and with all that had gone on I thought it would be important for Kara to be seen by her. It had been a while. Not to mention, we are in need of a weight and height check, a flu shot, and a few other things that need to be taken care of. Her doctor was out of the office for the rest of the week and her schedule for next week is booked solid. Her nurse assured me she would talk to her on Monday and they would do everything they can to get Kara in. Dr. M is the only one who has seen Kara in a long time and we need her, not starting our story over with someone new. I'm holding onto hope that we can get her in soon.

On Thursday afternoon I left a message with the nurse from Cincinnati letting her know that I was beginning to wonder if Kara was going to be reacting to corn. I heard nothing back and called right away Friday morning to let her know that yes, Kara was for sure reacting to the corn. You know, just in case they could by some chance get her in Monday morning, we would fly out Sunday. I was prepared for anything. They want to see her reacting? Now was the time! As I said in my previous post, yesterday, Friday, came and went and I heard nothing back from them. I am beyond disappointed and have given up hope in them.

I called Kara's allergy office on Thursday letting them know that I was wondering if Kara was starting to have problems with the corn, after having her first large slime diaper, going from baseline to that - no middle ground. Her allergist simply said that one episode isn't concerning to her at this point but to keep them updated and of course, to watch for blood in her stool. I called them right away Friday morning when we woke up to let them know the details of our night and how she was definitely reacting to the corn. She spoke with the doctor and her info was that she wants us to either contact GI and let them know, knowing what a pain in the butt the U of MN is, or we can see what we can do about getting in to the other GI group they recommended. I asked let them know what? "I'm not sure, I guess. I know your trouble with GI. You know what? I'm going to just have Dr. Ott call you, that will be a lot easier." Dr Ott called me a short time later and said to tell GI simply this: You put us on this plan, two week food trials after four weeks of an elemental diet. We did what you wanted, and it's not working. What's next?" I hung up and promptly called and left a message on the nurse coordinator's (UGH!) voicemail. In that message I let her know that Dr. Erickson GI, had said to leave Kate, nurse, a message when we got through our foods to have Dr. E call me and then said I needed to talk to Dr. E because Kara is reacting to the first food. (pretty much clear that I didn't want the nurse, I needed the doctor...)

Dr E called as we were napping. I got up and tried to pull myself together to talk to her. Kara woke up in the middle of this conversation, having yet another nasty, full diaper. I'm trying to talk to her while changing Kara, explaining what was happening. There was nothing even sympathetic in her voice. Kara laid on the floor in front of me with her clean diaper on, fussing as we continued to talk. Dr. E said "well, then pull the corn. She's having an allergic response to it, don't feed it to her." I said "This is our FIRST food trial, corn used to be safe, everything use to be safe, we just need to figure out what is happening to my baby!" With that, Kara filled her diaper again as Dr. E said "Move on to the next food. I don't understand what the question is." I said "well, we went through a menu of four foods to try, we'd do potato next but what about what is happening now? Do I wait, do I do potato, the elemental diet again right away?" Her reply? "I think we should skip those and go to rice." GASP. RICE? REALLY? I told her absolutely not. I explained that RICE put Kara into SHOCK. She said "well what kind of rice was it? I said it was rice cereal, plain old rice cereal at five months old. She said "well, it could have been cross-contaminated with oat, or wheat and that was the problem. I would give it a try." I was livid. "Absolutely not. It doesn't matter. Rice was BAD and she had shock from oat as well." We won't be trying those for YEARS at this point. I have never, ever wanted to hang up on someone so bad in my entire life as I wanted to hang up on her at that moment. She had an attitude, and she clearly had ABSOLUTELY NO CLUE WHAT THE HELL SHE WAS TALKING ABOUT. This confirmed right there that does not know FPIES.

She kept saying "well, is there anything else?" to which I answered "Yes. You are the physician that recommended we travel to Cincinnati. We have a plan with Cincinnati to come there when Kara is reacting. They said there wasn't much sense in coming down if she's doing well on an elemental, they want to see her while she is reacting and do testing at that point." She said "That sounds like a good plan." At this point, I think I gave up all hope on this doctor, and got off the phone with her as soon as I could, making plans to call her in a few weeks after we had passed a few foods. Ha.

Dr. Ott's office called during this conversation, to which I called them right back. Dr. Ott called the other GI in the group she had recommended and was able to speak with him about Kara. He expressed interest in seeing her next week. We have gone round and round about this, not wanting to start all over but clearly we need something as our current situation is far from ideal. They will be calling hopefully right away Monday and we can head down to the cities for this appointment. I am finding it incredibly difficult to be hopeful in this, anymore. I am SO thankful that our old GI at the U of MN found Dr. Ott for us. If it weren't for her, who knows where we'd be. For Kara being a very new, and very complex patient of hers, she has worked incredibly hard for us.

The more I think of what we've gone through yesterday, the angrier I get. I hold my girl, who is hurting, and I hurt right along with her, although in a completely different way. I have my four year old begging for Mommy time because Kara is taking it all lately and my heart just hurts. I don't know what our answers are. Brian and I are trying to stay strong, stay calm, and get ourselves through this, trying to make rational decisions but at this point , who knows what is right and what is wrong? Corn was supposed to be safe. Wait, kids with FPIES are supposed to have grown out of FPIES by now, or well on their way, not reacting to everything that goes into their body!

I sure hope that something a little more positive comes out of next weeks appointments. We sure need it around here!


1 comment:

  1. I found a 16 year study, just thought I'd share, just in case you hadn't seen it already.


    There's tables, and food triggers etc.