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.

Wednesday, December 29, 2010

Lip Smackers Update

The big Lip Smacker Saga earlier this week has ended. Kara had absolutely NO side effects from it.
It doesn't answer my question so much about the soy so we'll keep plugging along, only giving it to her once in a while and see how things go. On our way back to town from a family Christmas, I was able to stop at Trader Joe's so I got all stocked up on a large variety of "Kara Safe" foods so we'll be ok for a while, again.
Our newest trial? Sunflower Seed Butter. To be continued...

Monday, December 27, 2010

Lip Smackers

We had an accidental ingestion today. We made it through the holidays and celebration after celebration of being around family, friends and lots of food and had no accidents. Today after work I was tired. The girls had been playing so nice with their new toys and Brenna went to the entryway to get one of her new toys out of the diaper bag. That is where she found THIS:

"Mom, I found this! This is from Kara's surgery!" Yep, it is. "Mom, they put this in Kara's mask so she could smell it and wouldn't be scared!" Yep, they did, and she proceeded to put some on. Next thing I know, Kara runs over to me, smelling like banana berry and the inside of it is completely dug out of it and gone. Great. A quick google search tells me that there is no dairy in it, which I figured but the ingredients list looks like this:

Castor oil, Beeswax, Cetyl Acetate, Candelilla Wax, Flavor/Fragrance, Polybutene, Sesame Oil, Ozokerite, Carnauba, Acetylated Lanolin Alcohol, Mineral Oil, and Hydrogenated Soy Glycerides

So, a quick look at the list tells me that between the castor oil and mineral oil, she's going to be pooping. Then I see the SOY word and start to wonder. This should let us know how bad the soy is going to be for her. A little more look into it tells me that hydrogenated soy glycerides is the end process of a reaction using soybean oil. Maybe it won't be so bad after all. I sure hope not. We've been doing so well lately and I was looking forward to starting a sunflower seed butter today as a trial!

Cross your fingers, cross your toes. I'll keep you posted! :)

Saturday, December 25, 2010

Food Trials

I have had total writers block lately - it seems my mind runs wild in the late hours of the night but once I sit down to post what I had been thinking about, nothing seems to come out right.
Kara passed eggs. She loves them. So far she's only had scrambled and can't get enough of them. Her cough still lags, regardless if she's had eggs in a few days or not, so that ruled out any sign of reaction. They are a complete pass!

The soy, oh soy. I'm not quite sure what to say on this one. There is such contradicting information regarding soy and FPIES. She SHOULDN'T react to because the soy oils and lecithin don't contain proteins (feel free to weigh in here, anyone!) but she's not quite at the baseline she'd been at for the last few months. There are plenty of kids who can't have soy at all, but probably just as many that can handle it as an oil. We've had fussiness, eczema outbreaks, barky coughs, icky diapers, but nothing to the extreme to pull it completely. I'm just waiting for a sign - something to definitely tell me either way that this is a pass or a fail. A build reaction, symptoms to go away, something to make me sure that soy is good or bad. Have I ever mentioned that I HATE this game?

Once our lives settle down again, after the holidays, I will start a plan for trials again and get back to spending hours in the grocery store for new options. We've just been way to crazy busy lately!

Wednesday, December 15, 2010

FPIES Update

Our FPIES life has been pretty uneventful lately, which is perfectly fine with me! We have been trialing eggs (in the form of scrambled) here and there and I'm pretty sure they are just fine. One thing that has been going on, however, is that Kara's croupy cough has been back. It's tough to distinguish whether or not this is food-allergy related or if it's just that time of year. Either way, I've contacted her physician to let her know that we are doing daily nebs lately. I hope this isn't an indication of how our winter is going to go with her respiratory system, she hasn't had so much as a simple cold since her bout of RSV last February.

We were given the ok to slowly trial soy in oil and lecithin from Dr. Helm at Kara's last appointment. The last few days I've been giving her a Ritz cracker and she is loving it. No digestive problems from them, yet but we are going to do this SLOW. If this cough doesn't stop, I'll pull both the eggs and the Ritz for a while to see if we see any improvement but I just don't feel like that's what the problem is.

Our FPIES  live has finally starting to get to the point that I don't think about it every day. What a relief. I never thought we'd get to this point and looking back on how our summer went, it's amazing. Kara has gone from being  so far from baseline, dropping on the charts,  fussy baby to a thriving, happy, personable 18 month old. We have a few dinners that we all can eat - a pork roast with potatoes and carrots, spaghetti with hamburger and sauce. Life is again, getting a little easier every day. I can only hope we can continue on this path and not find anymore reaction foods!

Saturday, December 11, 2010

Cardiology Update

We have had a crazy week so I apologize for not updating on Kara's cardiology appointment until today. She has a healthy heart, nothing notable on the ekg or the holter. What we decided is that Kara is VERY sensitive and what happened is that her EGD that she had done in October put some stress on her body and that's the way she reacted to that stress. When she was having her EKG done in the office, she was not pleased. She didn't fight at all, she was just terrified. I'd settle her a little, she'd look down and then cry again. During this process, her pulse was up over the 210 point so the doctor was able to see how fast and how high she gets up there. The fact that it goes right back down again once settled is the main thing, the most convincing that she is perfectly fine. (from a cardiology standpoint.) We were reassured that anytime she'd have any procedures done, if another EGD is needed, for example, we'd be in the right place if anythign were to happen. So, basically this is something she could go through at any time but at least we left there knowing there was no serious heart conditions.

Sunday, December 5, 2010

Cardiology Again

Tomorrow is our big day. Cardiology/Electrophysiology appointment tomorrow at 10:45. I have no idea what's in store. We came down today to have a little fun instead of going there and back all in one day again. We took the girls to the Mall of America today, to Underwater Adventures. They thought it was amazing! We did a few other things while we were there (I got a new phone finally after that dreadful IPhone vs. Bathtub incident!) and then headed over to some family's for the night. The girls had a blast playing with their cousin and are now sound asleep. Today was just what our family needed!

I'm prepared for tomorrow and am expecting that we'll be in and out, actually hoping for a waste of time. I have done NO research on any of this, which is a little out character for me but it's all the more reason why I feel like everything is going to be ok. If not, bring it on - we are fighters and can handle anything at this point!