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, July 19, 2010


Last Thursday Kara had an appointment with our family doctor again. This was an appointment for the hives but also for us to develop a "plan" for Kara's care, on more of an emergency basis. Basically, if we end up bringing Kara to the ER because of a reaction, she's going to need IV fluids immediately. Kara is EXTREMELY prone to dehydration and has horrible veins, especially when it gets to that point. In the past, we've been told to come back in if she doesn't have x amount of wet diapers in x hours, doesn't take anything in, or can't keep anything down (or up!). We've gone through too many IV attempts holding our screaming baby down while too many people have attempted. We've had nurses, paramedics, anesthetists, and ultrasound guidance with minimal results. We are going to have orders at the hospital accessible to the nurses and doctors explaining Kara's FPIES and what her treatment needs to be. This should eliminate the stress of what we've had to go through in the past.

Also at this appointment we talked about this cough that Kara has had. I thought it started to go away once we eliminated dairy from Kara's diet but it didn't. It is now thought that she may/probably has asthma on top of everything else. Asthma and allergies run hand in hand and Kara was hospitalized with RSV last winter which puts her at even more risk of asthma. We've now started her on nebulizer treatments - two different meds twice a day. We have our follow up with the allergist next Thursday and we'll discuss this more at that time as well as request to have her tested for animal allergies and MN grasses and trees. I'm allergic to all animals and everything that grows outside so this wouldn't surprise me if she has this on top of everything else.

The other issue we addressed was Kara's weight gain, or lack of. She definitely seems to have an appetite but doesn't seem to be gaining any weight. She's stayed at 20 pounds for what seems like months now. We have her 15 month well child check in one month so we are hoping to see some change in that time.

The last issue went along with the weight problems. She just doesn't seem to be right digestively yet, despite the change in diet and new formula. We're not sure what this means but we have an appointment with a pediatric gastroenterologist again in August. We talked about how she'll probably need some additional testing done because it's felt that maybe she has more going on than what we've previously thought. We're prepared for testing, as we want answers but it's so hard to take all this in. We left this appointment quiet, not sure what to think, not sure what to share. We have a busy next few weeks.

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