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.

Monday, August 23, 2010


Does a good doctor mean the staff is compromised? Does good staff mean the doctor is compromised? When we were seen at MN Gastro last January the staff was very nice and helpful. The doctor, however was not. It seems the opposite now with the staff at the U that I've had to deal with. I just want a team to work together to get Kara figured out.

I've been waiting over a week for a call back from the nurse at the U with some information for us. We have played phone tag a few times but I've specifically left my work and cell number with her. I got to work this morning and there was a message on my voicemail from her which made me instantly irritated - my work voicemail specifically states that I'm not in the office on Fridays. I left a disgusted message this morning stating these labs were done on the 6th, that she told me she was going to try and get us in last week or this week, that I'm still holding out for answers, and once again, that I'd be available at work til 3:30 and after that, by cell, leaving both numbers again. I also called quite a few times throughout the day just to see if she'd answer. I left work with no phone call, and didn't receive one tonight either.

I don't know what to do regarding Kara's medical care. I feel like I am aimlessly wandering these halls of FPIES and doing it with no help from the medical profession. The doctors offer suggestions and then say "come back in a month" or "come back in three months." I feel like it's a damn good thing I have the common (and sometimes not so common) sense, family in the medical field, time to do hours of research on FPIES, and have Mommy sources who've been there done that. Without this, who knows where Kara would be right now because I can't seem to get any help from the professionals that should be helping us out. It just seems that there should be more out there than what I am getting. I don't know what I am looking for - maybe lab results back the next day, or perhaps even in the same week, from a simple lab that takes a minute to process? An answer in a day or so when I call and tell the nurse that my baby's dirty diapers are breaking her skin open wide almost immediately after going and I don't know what else I can do beside cry right there with her. That maybe we should quit screwing around and do the scope already so we can see what her insides look like. I don't feel like these requests are too much, so why can I not get any replies to any of this? I'm so frustrated once again.

Right now we are in a pretty good place with Kara but her only safe foods at this point are her Neocate and corn product with the exception of the bananas that we are trialing right now. My baby is 15 months old - we should be a lot further than this, or have at least been able rule out more foods than we have.

I wish there was someone in this state, or even area that has had luck with a facility and dealing with FPIES because Kara, and others are struggling.


  1. Isn't it amazing we are going through the same things. Disgusted is a good title for a blog post for me tonight too but I am so disgusted I can't even post anything!

    This is exactly what I want- support. Support from the medical community to help me care for my sick child. So that when I call because I am concerned about him, they know to call right back- or get him in for an appt. I just ask for a tiny bit of support....I'm doing everything else my gosh darn self- why can't I at least get that?
    Instead I get to sit and argue, for the BILLIONITH time about his symptoms or his intolerances or their distrust in our Allergist....

    It is nothing but ridiculous and I am wondering if our Administration would be curious to know how a child with a chronic illness is treated by the specialists here?


    Sorry, that isn't supportive- just echoing your frustration!

  2. I hear ya! Why don't you talk to your administration? They need to hear it from somebody, don't they???
    Dang it Joy. I was REALLY hoping you'd have good things to say so I could jump in the car and bring Kara down there.

  3. Oh my gosh Kendall, we ALL seem to be at the same spot right now. Disgusted. I'm about to post on Ginny's blog with incredibly similar frustrations. We all need to get grants to start an FPIES clinic somewhere here in the Midwest. Grrr.....