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.

Sunday, February 20, 2011

Insurance Update

This week I accomplished a few things with our insurance battle. I called the company and was told that I will need to have our physician write a letter of medical necessity and it will be reviewed for coverage. I picked this up on Friday and will be sending it in the next time we order formula. In this letter it was suggested that Kara be on Neocate Jr as a supplement for at least another six months. I'm hoping this works but I'm ready to battle if it doesn't.

I called the Medical Supply Company on Thursday to update them on my findings. I let them know that the (new) insurance company denied the formula as non-covered. They hadn't received that denial yet. I talked with the biller and explained to her that because I ordered it in December, I figured it would be billed as December's order but it arrived at the beginning of January so that's what they billed it as. I found out on Friday that they are going to now run it through as December's order since they checked their paperwork and it should have been put in as December. They are rebilling it now so I'm crossing my fingers that this works!!!

Potty Training

If you were to stop at our house, you would most likely find a 21 month old running around naked. We cannot keep clothes on this child, despite every measure taken. At her doctor appointment last week we were told not only is it normal at this age, but she probably feels better with no clothes on due to her skin being so broken out with eczema.

Kara is also potty training herself. Herself, yes. Brian and I really want NO part in this but she is mostly trained, at home, anyway. Why would we not want to be on board with this, you may ask yourself? Well, because we are not really close to a baseline right now and I'm much more content changing nasty blowout diapers than I would be dealing with that in panties and clothes. She is just too up and down right now to have to worry about trying to have her potty training, too. She will go all day long, on the potty chair, hollering for us when she's "done", following the queues from her big sister. We are also going on vacation next weekend and the last thing I want to think about while traveling is a potty training toddler!

Friday we went to a camper show. The girls loved looking in all the campers, had a blast with it all The first one we went into, we were searching it out and Kara found the bathroom. From then on, we had a battle with every.single.camper.bathroom. A few of them, we were sitting in, talking to the salesman as the girls were exploring. On more than one occasion, while us being distracted, we found Kara sitting on the bathroom floor trying to take her pants off, insisting she had to go potty. THIS is why we don't want her trained yet! She's still, at 21 months, SO baby and doesn't understand, yet she wants to be three, like her sister. Oh help!

I'd heard of kids "potty training themselves" before but never quite understood that term until Kara. Yep, she's definitely training herself.

Sunday, February 13, 2011

Insurance Battle

We switched insurance companies on the first of the year to Brian's new plan, a much cheaper, better coverage plan. (So we thought.)

I got a call from the Medical Supply Company a few weeks back because they received a denial from the insurance company - they had billed my policy, which termed 12/31/10. I explained how I placed the order for Kara's Neocate in December, so I assumed it would be billed under my plan. This was going to work perfect because we met our out of pocket max for the year. I explained this to the gal I spoke with and she said they bill it out on the delivery date which was January 3rd. BIG BUMMER, but we'll deal with it. She was going to do some looking into this to see if they could change anything but then never got back to me.

Today, we were opening up yesterdays mail and we received some explanations of benefits from the claims we've already had this year. In this was a denial. A denial for $2,162.00, the monthly cost of Kara's Neocate. The reason? Non-covered benefit.

I think I've got my work cut out for me. I don't necessarily remember the details of my battles last summer, all I know is that it SUCKED. I did get it paid for eventually, but to have to do this again is not going to be fun, and, it's not like I have anything better to do, right?

We have all eight cases of formula still boxed up. If worse comes to worse, we'll have to return it (hoping they'll take the unopened cases back!) and try try try to get her on a well rounded diet so she won't need the Neocate. For now though, it's a staple in her diet. I'm already overwhelmed.

Pressing On

So far we have a full 4 days of amoxicillin in Kara and we push on. It's definitely not going as bad as the augmentin went but we are having some questionable symptoms.

I've heard of FPIES Moms talking about how their child has periods in the night where they are wide awake. We've never experienced this symptom in the past but last night we had our first one. Kara was up for over 3 1/2 hours. It started with fussing, and lots of it. I finally got up and she looked at me asking for a ba-ba. I made a bottle, went to bring it to her and she screamed. She wanted to be snuggled. Ok, I can handle that. She laid in bed next to me, drinking her bottle. Once she was finished, I put her back in the crib and she screamed again. Something was wrong and she was in no way going back in there. I put her back in the bed with me and she snuggled. I rolled over, pretending to be asleep and periodically would look over at her, and those big blue eyes would be staring right back at me. For a while, she fussed and squirmed, and then finally had an icky diaper. Thinking this was the reason for the fussiness, I changed her and attempted to put her back in the crib but she would NOT have it. She normally dives into the crib, and is not a snuggler at all! She LOVES her crib! This went on as I watched the clock, starting at 12:30. At 4:00, the last time I checked the clock, she had finally started to relax and I was able to doze off, only to be woken up by this same behavior at 6:00. I grabbed another bottle, hoping she'd go right back to sleep and we battled, only this time she was one cranky little girl! With the lack of sleep and tummy ache all night and day, I guess it's to be expected.

We've had some icky diapers, some crankiness, and now the restless night. I'm trying not to think too much into all of this, and am trying to remember that the benefits are outweighing the risks at this point. We need these ears to clear up, so we press on.


One of Brian and I's favorite things to do was to go out to eat. Since Kara has started noticing that her food is different, this has been extremely difficult and our going to eat as a family has become non-existent.

Friday afternoon we were itching to get out of the house, and Brenna wanted pizza. We didn't have anyone to watch Kara and after much debating, I got online and started looking up ingredients. I found that Pizza Hut has one kind of dough that doesn't contain any dairy. I wasn't sure how their dough comes, or if it would even be a possibility, as their "personal pan pizza" dough does have dairy in it. I had the idea that maybe we could get a pizza made for Kara with a dairy free dough, some pizza sauce, and some ham.  I called the restaurant and talked to Sue. Sue told me absolutely, what she could do was make her a small, thin crust pizza, just for her, with whatever we felt would be safe for her. She explained how her grand-daughter has celiac so she understands how difficult these things can be. I got off the phone and felt instantly emotional. Really? She not only helped me with ALL the ingredients to make sure what we were going to give her was safe, but gave me suggestions and told me to ask for her when we got there! I could have cried! (I probably would have, had I been by myself!)

We headed into town and when we walked in we asked for her. She came right out, and since we were undecided on the rest of the order, she confirmed exactly what we needed for Kara, let us know that she'd get it put in right away, and told us we could help ourselves to the salad bar, for anything that Kara would be safe eating. We ordered our pizza and in the meantime, Kara's pizza came. We made a production over her getting her own pizza and she was grinning ear to ear. She had her own, probably 8 inch pizza, with a thin layer of sauce on it. We handed each piece to her and she bit into it like such a big girl. Feeding her has been difficult lately, as she's sick of the same old, each and every day. She ate half of the pizza and was in heaven with this new-found food!!! We had a wonderful family dinner outing and can't wait to do it again!!

Tonight, I went to the Pizza Hut website and wrote feedback of our amazing night at their Baxter location, recognizing Sue for going out her way to make our experience such a great one. I'm sure she doesn't realize what a big deal this was to us, but in the FPIES world, anything that can help make life, especially mealtime, easier, is an experience never forgotten.

***I forgot my phone in the car, so I got NO pictures of this. I know the memory of it will last in my head forever, and I'm smiling, and *maybe, just maybe* getting teary eyed thinking back on the experience. =)

Wednesday, February 9, 2011

Ears Again:

While at the doctor today, it was agreed on that it's no wonder Kara's been so irritable lately with how her skin looks. We were there for a check on her skin, a listen to her lungs because of that barky cough that's still lingering and then a check to see what was going on with her ears. Last week we were given a prescription since one ear was a little red. If she spiked a fever or if we otherwise thought she needed it we could fill it but that didn't happen. I didn't feel comfortable filling it when I didn't know what was going on inside. An antibiotic could be very risky again, causing her another reaction.

Kara was a little entertainer in the office and a very good patient. She's so good about getting checked out. After her skin was examined, she turned her head over to get a good look in her ears. Right away, it was commented on about how awful it looked. She coudlnt' believe she wasn't sick, or even MORE fussy than she'd been. Yuck. The other ear? Definitely red as well, but not nearly as bad. Great.

Here is the antibiotic conversation:
Dr: Which one does she NOT react to?
Me:No idea - she's had two and she reacted to both.
Dr: Amoxicillin or Zithromax?
Me: Well, we don't know about Amoxicillin, and she was in the hospital after Zithromax last year.
Dr: Ok, we'll go with Amoxicillin.
Me: Is that going to be strong enough to cut the infection?

Hmmmmmm...cross your fingers for us, pray for us, whatever it takes.

Skin Care

Kara's eczema has gotten out of control. This is a picture of her ankle last night:

After some Benedryl last night she looked much better but by lunch time today it was back - ankles, arms, cheeks. It keeps her up in the night - her room is above ours so we hear all the kicking against the sides of the crib, the cries out, even though she's still half asleep. Poor baby has been irritable, miserable lately.

Luckily, I had a follow up appointment made for today. I was especially thankful after the flare up twenty minutes before the appointment today. We picked up a new prescription yesterday, a special cortizone cream, but I didn't want to use it until after we saw the doctor again today. After today's instructions from the doctor, we now have quite the array of creams and lotions for Kara's skin. Trying to keep this all straight after her bath was NOT an easy task!

Here is what we have now - these all need to go on her skin, every day, as needed. Some of them will be for a few days, others are just day to day care. Some spots are more prone to yeast (a problem we've dealt with since she was just tiny) and some spots are beginning to become infected.

Different strengths of cortizone, a topical antibiotic, moisturizers, a topical steroid, an antifungal and a barrier cream.How am I ever going to keep it all straight? Oh yeah, this is also on top of the benedryl for a few days, zyrtec and an oral antibiotic. = )

Friday, February 4, 2011


Friday is my favorite day of the week. I work four days a week and get to spend Fridays home with my girls, while Brian is at work. I look forward to this day again every Sunday evening as we are preparing for the next few days ahead. We usually have way too many plans and don't get half of the stuff done we want, but it's quality time for us girls to spend together. We call these days "Mommy Day"!

Today, after playdates and other things going on the last few Fridays, I got up early with the point of cleaning bedrooms, doing laundry and going through the mounds of clothes that the girls have grown out of lately. Too much to plan in our short day together but what we get done, is done.

Kara had other plans for me today. About every ten minutes all morning, she'd have a mini-meltdown which would result in having to snuggle and rock-a-bye for ten minutes or so after. Normally, this would be great but she's still so out of sorts. What's better than rocking a baby, right? The ambition to get things done has slowly left me now. At 11:30, the rocking resulted in a sound asleep baby! While rocking my baby, thinking about all the things I should be doing, it reminded me of a picture my Mom needle pointed while she was pregnant with me, and we now have it framed and up in the girls' room. It says this:

Cleaning and Scrubbing can wait for tomorrow
for babies grow up, we've learned with our sorrow.
So quiet down cobwebs, dust go to sleep!
I'm rocking my baby, and babies don't keep!

Post Reaction 2

Beef went fine. We were extremely nervous the night we tried it and watched the clock. Once we hit the 3 hour mark, Brian and I both took in a big sigh of relief. The rest of the week, we stuck with her normal, 100% safe foods.

Kara isn't back to herself yet. One week later and we are still having effects of the reaction. She is extremely clingy to me, fussy, and just not herself. We had been nebbing her once in a while because of that barky cough but that seems to have cleared up for the most part. I brought her in to the clinic on Tuesday because she wasn't sleeping well, and I just thought it was worth having her ears looked at again. We couldn't see our primary but instead, her old primary - she had him pre-FPIES. Ears looked ok, one was a little red. He was more concerned of some sinus-type symptoms developing. Because of her history he was afraid to treat it quite yet. He sent us home with a script for amoxicillin, if absolutely necessary. He took time checking out her skin. He mentioned maybe trying a pro-biotic (this word seems to be coming out more and more in these FPIES Kiddos!) but didn't have a whole lot of advice for me on what to look for, since he isn't at all familiar with FPIES. He also mentioned that he thinks she would benefit from seeing a dermatologist. I asked what a dermatologist is going to have us do besides cetaphil, vanacream, cortizone, miconazole, and the other cocktails we use on her skin on a daily basis and he answered how they look at the big picture and might have some more ideas to get her cleared up. I put that on the list to talk to her primary about - I'll probably bring her back in this week, if possible, to check that ear and discuss the other issues going on.

Digestively, she's back to baseline, now is the trouble of finding baseline again for all the other systems!