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, March 28, 2011

French Fry

Yesterday we noticed that Kara had a sudden flare in her eczema. Patchy, almost hive-looking spots showed up all over her feet, legs, belly, and she looked puffy. Brian and I wondered what it could be from all day. We were at a family dinner last night commenting on this and found out that Kara got a hold of a DQ french fry the other night. Potatoes are safe for Kara so Brenna was asked if she could have french fries, to which Brenna said yes. Apparently Kara wasn't too fond of it so she didn't finish it. Brian and I looked at each other - question answered! No wonder she broke out. Now to figure out what is in the french fries that she was reacting to.

I did a search and found that they don't have dairy in them but do have soy oil in the coating as well as obviously being fried in soy oil What I couldn't find is a list of ingredients, as far as what the coating might be. I have a resource, a friend that owns the DQ in town, and she is always interested in how Kara is doing. I sent her a message today and the results were, I must say, a little worse than I thought they'd be. RICE FLOUR - this explains her reaction to two little bites of a french fry. THANK GOD she didn't have a full blown reaction to that small amount!

In the News

A few weeks ago, this story was featured on abcnews.com. This was amazing recognition for the FPIES community and only the beginning of news stories written on FPIES families all over the country.

When this story appeared, I sent it to our local newspaper and let them know that our Kara suffers from the same thing and a little bit about FPIES. Shortly after I received an email asking me if I'd be interested in pictures and an interview.

Tonight was our interview. The girls seemed pretty fascinated, sitting right at the table with us as we talked, then my Mom came over for a distraction and took them up to play. I sat and told our story as the reporter took notes. Whew - we've had quite the battle when we started from the beginning!

The photographer got there and we went up to the toy room to see the girls. Kara was a ham for the camera. It was so cute! He took shots of Kara playing, Brenna and Kara, our family, seeming very interested in our story as well. We came back down and finished up our story. We were doing so well but the break totally made me lose my whole train of thought and I couldn't seem to get things together afterwards. I was so confident before then so I think it's all going to be ok.

I'm not sure what part she is going to really focus on our story, there is just so much to it now but I am so excited to see what she comes up with! She was shocked at our dismissal from physicians in the beginning calling this gastroenteritis! Oh, the things we've been through in this FPIES life! We found out that our story is going to be printed in a special section they do once in a while called "Health Watch" and should be out there around the end of April.

I'll keep ya'll posted! =)

Friday, March 18, 2011

Neocate Coverage: One

This post is one I meant to write about the other night, before all the sickness hit our house!

We switched insurance at the first of the year. Same company, only different group. Brian was offered insurance through his new job and it's a wonderful policy, one that we pay 1/4 of the premium that I paid with my insurance. All around it's a much better policy. Or so I thought.

I knew the fight I had to put up to get Kara's formula covered with the first company but that was nothing compared to what I'm having to go through this time around. Our original denial was something along the lines of "this is a non-covered benefit". This resulted in phone calls back and forth with the medical supply company and our insurance group. I had Kara's doctor write a letter and in this letter it explained how Neocate Jr is Kara's main source of nutrition and right now we are looking at her being on it for another six months before even beginning to think about stopping it. I sent this letter and the original script for the Neocate to the insurance company. Not good enough. It's non-covered, they can only process claims that are covered and it would need to go through the review board.

I emailed the drug rep from Nutricia and explained our situation and wondering if he could send us some more samples. We have some to get by, for a little while but anything could help, was my thinking. He emailed me back telling me that they are very limited to the amount of samples they can send out but did put two cans in the mail for me. He gave me links to some resources on the Neocate website - an example letter for the doctor to the insurance company and a program that they have for assistance, if all else fails. I checked this program over, emailing him back with my questions - We don't qualify for MA, we know this, so do we really have to have a denial? We don't qualify for WIC, we were told that when Kara was first prescribed Neocate, do we still have to apply? He promptly emailed me back apologizing because the assistance program is only for Neocate Infant. They currently have no assistance for anything but the infant. I was immediately irritated. How does a family afford this? Our monthly formula bill, before insurance, is 2000-some dollars. We have to pay about $200-$300 of this because of co-insurance, with our old policy. Also, what do families do that simply CAN'T afford this? It's not really an option at our house of whether or not Kara should be on it. She's on a plateau for weight and height, so we are somewhat back on weight watch. With her recent sickness I'm sure she's only lost more! I'm determined to figure this out.

I went back to scouring the Neocate website and anything else I could find. I knew there were MN State Statutes out there that it was covered under certain diagnoses and Kara's is one of them. I went to THIS website, Childrens Magic (Milk Allergy and GastroIntestinal Coalition) and found everything I needed. Here is the MN link and here is a link to the listing of states with elemental formula coverage for those interested that don't live in MN.

This is written right from the bill:
Required coverage for amino acid based elemental formulas for certain conditions. (a) Every policy, plan, certificate, or contract referred to in subdivision 1 must provide coverage for amino acid based elemental formulas when ordered by a physician for diagnosed cases of cystic fibrosis; amino acid, organic acid, and fatty acid metabolic and malabsorption disorders; IgE mediated allergies to food proteins; food protein induced enterocolitis syndrome; eosinophilic esophagitis; eosinophilic gastroenteritis; and eosinophilic colitis, when those conditions are diagnosed by an allergist, gastroenterologist, or pediatrician. Coverage of amino acid based elemental formulas for enrollees diagnosed with an IgE mediated condition is limited to enrollees age five years and under.

Perfect, right?! No problem. I emailed the insurance rep all of this information stating I can send her the exact links of even (Insurance Company's) letter from their Executive Vice President and Chief Medical Officer stating exactly what the letter says, offering a link to that as well. I was told that our group is self-funded therefor they are federally mandated, not state mandated. I need to gather all the information I can and write a letter to the Board of Trustees to be reviewed.

And so it begins. I have my work cut out for me.

Wednesday, March 16, 2011

Night Owl

It's been a long night. When we went to bed last night, Kara was tucked in nicely, sleeping sound. I couldn't fall asleep so ended up being up until 11 which is WAYYYY past my bedtime on a "work night"! Around 12:30 I finally got up with Kara because I'd been listening to her fuss and cough more and more. She snuggled with me for a little while, I took her temp, and it was 100 degrees. Dang, looks like we're not going to have a better day today! I didn't give her Motrin right away for a few reasons - I wanted to see what this temp was going to do, figuring it'd hang right around there, and also because it seems to WIRE her so I really only use it in much needed situations!

We snuggled, but she couldn't seem to get comfortable. The time frame of my night is a big blur - she asked for a bottle so I made her one. She drank half of it and threw it all up. Luckily I caught it all in her blankey, but bye-bye blankey for the night! Within a short time after that, with increased irritability, coughing, the whole works, I noticed she was really burning up. I took her temp again and it jumped to 104.2! Crap! I panicked, getting Motrin in her ASAP. We battled trying to fall asleep for quite a while - in the chair, in the bed, in the crib, in a little bed on the floor, nothing worked. Eventually that Motrin kicked in and she climbed off my lap and decided to play with the dollhouse - with just the light of another room dimly shining in. As I type now, she's laying back down on the little bed I made her with Playhouse Disney on. I hope she crashes soon, it's 4 a.m. and I just don't trust a 21 month old roaming the house while everyone is sleeping so I'm doing my best to stay awake! I'm SOOO tired and I'll have a 3 year old up in a few hours and I'm sure, another clinic visit this morning.

Tuesday, March 15, 2011


Over the weekend, Kara started with some respiratory problems again. We had a full eczema flare and a croupy sounding cough to go with it. By Sunday afternoon we had a low grade fever, thick, nasty nose and a terrible cough. We've been trialing almond milk and I can't help but think it's possibly a building reaction to that but as I start to sneeze more and more, I wonder if she's just "simply" caught a cold.

Yesterday morning we decided to bring her to the doctor. It was a little premature to bring her in, as I often do with her, simply because we know from experience how fast she crashes. It was found that both of Kara's ears are full of fluid again. Not infected, YET, but still, not good. Her lungs sounded ok but she's definitely not doing great. We were instructed to start her on the pulmicort and albuterol right away, three times a day until her symptoms subside. While talking about the fluid, I asked if it was time to talk about seeing the Ear, Nose and Throat doctor. We looked back in her chart and she's had constant fluid at all checks, if they weren't infected, except for the one days before our trip. (I think that one was a total miracle, by the way, to let us go on that much needed vacation!!!) We have an ENT consult in three weeks.

There is a lot more to think about with Kara getting tubes put in than there is with a "normal" child. It's a procedure that we are not going to take lightly. We aren't sure if the procedure will be able to be done at our hospital or if we'll have to travel to have it done because of the reaction Kara had when she had her EGD done at the U of M. At our consult, we'll talk with the ENT and if he decides tubes are now needed (that the benefits will outweigh the risks of the procedure) we'll need to have a consult with the anesthesiologist. I was told that normally, it's a quick and easy procedure - the child doesn't usually even have an IV placed. In Kara's case, she WILL have the IV, just in case. The anesthesiologist will have to be the one to do the procedure, not a nurse anesthetist, and she'll have to be watched extremely carefully after the procedure because of the tachycardia that she went into with the scopes. It's a lot to think about!

We didn't leave the doctor with any prescriptions this time, we already had the pulmicort and albuterol but if Kara doesn't turn the corner pretty quick (like by tomorrow!) we'll be bringing her back in to have an ear re-check and/or check for pneumonia. We are doing the nebs as prescribed but last night we even had to get up and neb her in the middle of the night because she was struggling so bad to get a breath with all the coughing she was doing. Poor baby.

So, I stayed home yesterday, Brian took the shift today and tomorrow is up in the air. Kara's wandering around the house between coughing fits and we are hoping for a healthy, happy girl to be able to go to daycare tomorrow.

Trying a Break

We've been busy since we've been home from vacation, but mostly, I've tried to take a break from everything and try and get our lives back to as normal as possible. Trying to get back to reading, crocheting, the things I used to love to do before I sat on the computer night after night once my girls went to bed - researching, chatting with other FPIES Moms, scouring FPIES message boards - anything I can do to find help for us and to help other Moms. It's become an addiction of sorts to do everything I could to become the best advocate I could for my daughter.

I've had blog posts brewing but the words haven't been able to come out right. The last two days have now been extremely challenging for us in the FPIES world and I feel the need to write about it - 1) to help me remember what we've went through, looking back 2) to help the next clueless Mom who comes along my blog when searching for answers to her little ones condition and 3) to update friends and family of what's going on at our house and with Kara.

I'm going to try and do this in two separate posts. We'll see if I get them all done tonight - we've had a pretty unhappy little girl on our hands the last few days.

Sunday, March 6, 2011


Shoes, check. Swimsuits, check. Toothbrushes, check. ID, check. Packing for this trip was an extremely difficult task. On top of all the every day basics that need to be packed for a weeks vacation for a Mamma and two little girls, I had a lot of other, VERY important items to remember. Items needed to be remembered because if forgotten, we'd be out luck. Epi Pen, check. ER Letter, check, Dr. M's food letter, check, Neocate - oh no! Where am I going to find the room to stash four cans of Neocate in our already full suitcase?! Benedryl, Motrin, AHH! A bottle! We can't forget the bottle! Cortizone Cream, Desitin, Prescription Antibiotic Cream, I think we could have used a suitcase for Kara supplies only!

Note to self: Just because you buy three seats and are allowed three carry on's, a diaper bag, and a purse, doesn't necessarily mean that it's a good idea to pack with what you are allowed to bring on the plane! Especially when you already have a baby in a carrier on your back and a 3 year old in the umbrella stroller! We must have been quite a sight at the airport!

The three of us travelled to AZ with one of my good friends and her daughter for a week in the desert, visiting my Grandparents, a little bit of sight-seeing, and soaking up the sun. We had quite the load but the trip there was quite an experience.

I'll start with picking Shannon up at 6:00 a.m. on Saturday morning. Kara was really confused as to what was going on, getting up early, rushing to get ready and getting shoved in the borrowed van with a blankie and bottle, in the dark. We picked Shannon and her daughter up and when we opened the door to load her stuff in, Kara had a fit. She cried and cried, so out of sorts, wondering what the heck was going on. Soon she was crying for Daddy and it took quite a bit of convincing that she was  fine. Luckily, this was the only meltdown we had on the way there. Kara tends to get quite out of sorts if we're away from home for too long, even if it's just for the day.

Upon getting to the airport, we unloaded and had the three girls between Shannon and I in the lines as we checked our baggage and checked in. We got to the security checkpoint and started unloading, in the same fashion, keeping the kids in between us so they couldn't escape! We got all of our things through but since I had some liquids for Kara, we had to go through a little more extensive check than just sending our bags through the x-ray. No problem, I was prepared for that from travelling last year. What I wasn't prepared for, however, is having something in my bag flag me, to the point of having to get a pat down. I understand that they are doing their jobs, but we had no clue what triggered this, and I was told ahead of time that the foods that I had brought with for my severe food allergy baby was going to be just fine. Nothing like holding up the line with pure chaos as Mommy has to go through all of that. Ugh. I survived it with a laugh and we started loading everything back up. Threw all the bags in the stroller, got Kara strapped in and onto my back, let Brenna run, only to find that our gate was RIGHT.AROUND.THE.CORNER. So much for getting everything all organized again!

We sat down and fed the kids the lunch that we brought and talked about our flight plan. We had three seats on one side, and the two on the other so we were all next to each other. It was decided that Shannon would take Brenna so the bigger girls could play, and I'd try and keep Kara content in our seats. Although Kara is under two, I did purchase a seat for her because I never thought she'd sit for a minute on my lap, that she'd want to be a big girl in her own chair. Man, was I ever wrong. On the flight to AZ, she wasn't in her seat for more than 5 minutes, total. She napped about 20 minutes and the rest of the trip I fought her, climbing around all over me, going between Shannon and I, hollering PEEEEEE every time she peed until I could finally take her to the bathroom to change her, it was a battle. Once we arrived, we sat tight until the plane was mostly cleared so we could get our chaos off.

What an adventure. No one said travelling with young children was fun and my attitude for Saturday was that we just had to "fly" through the day and get there. Once there, we could sit down and relax, planning our week out.

Saturday, March 5, 2011


We got home last night from a week long vacation with the girls, to Arizona for a visit with my Grandparents. I have lots to say about our adventures and not a lot of time (or energy!) so for now, I just wanted to say that WE DID IT! We made it a week on vacation with no major food-related issues. Except for the Kara barfing in the carseat on the side of the highway, in the dark, ten degree weather incident. This, fortunately, was not an FPIES reaction, but certainly the icing on the cake of our long day of traveling. =)