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 30, 2010

Poor Baby!

I didn't post much about the pears fail yesterday because I wasn't entirely sure what was going on, other than a fail. What we have is a very sick baby on our hands and I don't want to fail another food, ever again. I understand that the process of finding foods that Kara can eat is going to more than likely involve more fails but hopefully this one is fresh out of my mind before that happens again.

All weekend I kept commenting on how Kara wasn't herself and that she had the pear fail. Her diapers were bad, her coloring was bad. Her complexion had a sort of gray-ish tinge to it. Sure she was running around and playing but she just wasn't quite right.
I left for a few hours yesterday afternoon and then came home to a fussy, warm baby. I took her temp and it was 102. I reluctantly gave her motrin finally because she was so cranky and we needed to get that fever down. That resulted in a sick baby running in circles around the room. I hate what it does to her! It takes her fever down but she's still sick, has no balance, falls and gets hurt. She refused her bottle last night and I pretty much knew what was to come. I woke up at 4:00 this morning panicking because she hadn't been up yet. I ran up to check on her and she was burning up. I took her temp, again, 102. She popped up so I got her up, gave her more motrin and tried a bottle again, with no luck. We sat in the chair for an hour as she whimpered on my lap, then I put her back to bed.

I got up this morning and made her an appointment with her family doctor and also called the allergist to catch him up on everything that's been going on in the last few weeks. We made an appointment in 2 weeks to see him again, after her GI follow up. I'm not sure he has any real idea what to do but wants to be updated, anyway. In the meantime our doctor is doing some looking around for an allergist that can maybe help us out better.

While at her appointment we ruled out possible causes of the fever. Ears are good, lungs are clear, throat looks good, and then started looking in her chart at her past fevers. She's had a lot of them but we never really had a definite answer to why she had them. Looking back, they run hand in hand with diarrhea so this is opening up the picture a little more. She's more than likely been having small reactions all along that we couldn't pin point (until the elimination diet) and tends to run a fever right along with them.
Kara's weight is down. She had her 15 month well child check a week and a half ago and we were so excited because she finally gained weight. She was 21 pounds, 6 ounces. Today she was 20 pounds, 12 ounces. This is on the same baby scale, with only a dry diaper on, both times. This is discouraging. She hasn't thrown up, I explained to the doctor but has been really "urpy" and as I said that, Kara showed her what I meant. We are watching closely. She's not dehydrated yet but close. We are doing unflavored pedialite but she won't touch it. She took a total of 14 ounces of Neocate today and a few bites of kix, some banana and some corn meal cereal. I put her to bed with a 100.6 temp and I'm hoping for some improvement in the morning, otherwise I'm afraid we're going to have to go in for IV fluids.
We need a few more days of just corn products and banana to get back to baseline before we can trial anything else. With her refusing all but a few bites of food I'm hoping we don't run into food aversion problems again. Hopefully she's back to herself soon, it's been a tough couple of days!

Sunday, August 29, 2010

Pears Fail

We trialed pears the last few days after much consideration over what our next food was going to be. I decided on pears because it is one of the few foods that most FPIES kids can actually have.

We started pears last Wednesday around suppertime. I gave her a sippy cup of about 1/4 pear juice, 3/4 water. That night she was up a good part of the night really fussy, just laying on us, obviously uncomfortable. On Thursday she had a total of 5 bad diapers. Hello, diaper rash, it's been a whole two days. I can't say we've missed you!

I did some researching of this and thought maybe it was because of the juice, maybe it was the syrup in the pears. I had some fresh pears but when we finally went to trial pear, they weren't so fresh so I settled on what I had. It was on Friday that I steamed some up. This breaks down the proteins a little more so hopefully lessening the chances of her reacting.

It was evident by Saturday morning that we were failing so I called it quits. I'm bummed about this and not sure what to trial next. I really thought this was going to be a pass food but it certainly explains a lot of past behavior and symptoms in Kara before we started the elimination diet and food challenges!

Saturday, August 28, 2010

FPIES Article

I came across this article tonight and thought it was an easier explanation of FPIES to understant.


This is by Dr Frederick Leickly from Riley Hospital for Children in Indianpolis.

FPIES- Food Protein-Induced Enterocolitis Syndrome
Last week I had the pleasure of meeting a young lady with infantile FPIES. Both of her parents were with her for the evaluation. The family alerted me to a contribution to the literature written by allergists for a condition that may not be commonly seen by an allergist. What I learned from that encounter has broadened my perspectives. FPIES or Food Protein-Induced Enterocolitis Syndrome is a clinical condition rarely seen in the allergy clinic. Thankfully it is a condition that is very uncommon. Based on how these children present, I would think that FPIES would be most often seen by our colleagues in pediatric gastroenterology. FPIES would not have been something that we could diagnose by a skin prick test (SPT) or by specific IgE in the blood. This is an immune reaction that is cell- mediated, not antibody mediated. IgE is not involved with the reaction. This cell-mediated reaction is more akin to how contact dermatitis or poison ivy affects susceptible people.

This young lady’s mother had with her an article that escaped my attention. The article was written by known experts in the field of Allergy (the lead author was Anna Nowak-Wegrzyn with Hugh Sampson, Robert Wood, and Scott Sicherer as contributing authors). The paper was a nice review of FPIES and a study of 14 special children. I think that any allergist who sees young children should review this paper. These young children can present with signs that are possibly consistent with anaphylaxis.

The article was published in the journal Pediatrics in 2003. It is a review of 14 children who presented over a five year period at the Mount Sinai Pediatric Allergy and Immunology Clinic (New York, NY) and to the Allergy Clinic at Johns Hopkins Children’s Center (Baltimore, MD). The reactions that these children experience include severe diarrhea and vomiting which can lead to dehydration and shock. This is a clinical diagnosis; there are no specific laboratory tests that make the diagnosis. A food challenge can confirm the diagnosis.

Milk and soy have been the most commonly implicated foods causing FPIES. This article shows that other foods specifically solid foods have been shown to be associated with this syndrome; rice, oat, barley, peas, string beans, squash, sweet potato, chicken, and turkey. These children underwent food challenges to show the cause-effect relationship between the exposure and the symptoms. There were many combinations of foods causing the problem; cow’s milk alone, soy milk alone, both cow and soy milk, a single solid food, and more than one grain. The group was compared to children who were only milk/soy sensitive.

The profile of the Solid Food FPIES population was as follows;

■Age at onset of the reaction: 5.5 months (range 3-7 months)
■Age at resolution: 24 months (range 14-44 months)
The Milk/Soy FPIES profile was the following;

■Age at onset of the reaction: 1.0 months (range 2 days to 12 months)
■Age at resolution: 28 months (range 14-21 y)

This was the first published study of FPIES triggered by solid food. Oat was the most common food causing solid-food FPIES. The study also showed that breast-feeding may have a protective role in preventing/delaying the development of FPIES. The diagnosis of solid-food FPIES was not made until after two reactions. It was also noted that these reactions were severe. The delay in diagnosis was attributed to a number of possible factors; low incidence of the disorder, a presentation that looks like septic shock, and the belief that solid foods such as grains, vegetables, and poultry are of low allergenic potential. It was also noted that the time course of the reaction may delay making the correct diagnosis. The daily feeding of milk – cows and soy, leads to chronic problems. The re-introduction of the milk causes symptoms two hours after the exposure. As mentioned previously another problem is the lack of any test (other than avoidance and a food challenge) to confirm the diagnosis.

Another point that was made was that almost half of the children in this series had multiple food sensitivities. Children who were already on a casein hydrolysate formula had a median of four solid-foods that they were sensitive to.

No infant developed FPIES with exclusive breast feeding in this series. The authors pointed out that they were unaware of any reports of FPIES during breast feeding with absolutely no direct oral feeding of an offending food. No infant developed FPIES to milk/soy after age 1 years and the oldest child who had the solid-food FPIES was 7 months old. There were no ‘predictors’ of which child with milk/soy FPIES would go on to develop solid-food FPIES.

The Bottom Line-

The reaction of vomiting/diarrhea possibly leading to shock can be consistent with an IgE-mediated reaction and these are perhaps more common than FPIES. Such a reaction would lead to an allergy evaluation which will be negative if the diagnosis is FPIES. However, the infant is still at risk for a severe reaction with re-exposure.

Board certified allergists are credentialed in the care of allergic conditions in both pediatrics and internal medicine. Some of us went into allergy after completing training in pediatrics and others were trained in internal medicine. FPIES would not have been a clinical entity seen during internal medicine training. It may have been seen/talked about for a pediatric oriented allergist. FPIES favors infants. My point to all this is that although very rare, we need to keep this type of presentation in mind when seeing young infants with scary episodes of vomiting leading to shock with solid-food exposure. Their evaluation will show no evidence of allergic sensitization. We can help by teasing out the history of exposures and clinical course. We can offer recommendations for avoidance of the common foods that have triggered solid food-induced FPIES. This profile of young infants reacting in such a violent way needs to be considered in the evaluation especially if they have had issues with cow’s milk or soy milk.

This young lady made an impression on me. Her story was very scary. She caused me to go back to the literature and review what is known about her presentation.

Fred Leickly

Wednesday, August 25, 2010


In all the negativity lately, I thought I needed to post something positive!

We were in our usual Monday morning hurry the other day and Brenna needed to bring a baby to daycare with her, so of course, Kara thought she should have one too. Normally, I object but since Kara has been following in Brenna's foot steps lately, I let my new little Mama have her baby too.

I watched them through the mirror in my car as I was driving. Brenna playing with her baby, Kara mimicking Brenna's moves with hers. It was absolutely adorable and melted my heart. My baby is getting big. I've tried to not "baby" her so much in the past week and expect a little bit out of her and she's taken that on full force!

I wish I would have pulled over to take a picture. Next time, I'll take that extra minute and do that. These are the moments to treasure forever! :)

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.

Sunday, August 22, 2010

Accidents Happen

We've had a busy weekend. Lots of running around, trying to put the house back together after the kitchen remodel, Mommy not feeling well, and too many accidents have happened after doing so well for so long. As of yesterday I was really hoping that her accidental ingestion's were going to lead to nothing because it was "so far, so good".

Friday morning Kara got a hold of Big Sisters chocolate milk. We carried our cereal bowls to the bathroom to rinse out (no kitchen yet!) and got sidetracked after that. Later on, Kara came walking over to me to hand me Brenna's sippy of chocolate milk. She was so excited to have her hands on it! I don't know that she even got any of it but I'm sure she tried it. Needless to say, I was paranoid all day that something would happen, but nothing did.

Dad has been busy with the house remodel and not around much, so wasn't quite sure what we were doing with diet this week. He took her on some errands so I could get some rest and gave her a french fry after a stop at McDonald's. The 16 year old in the drive through window assured him there was no soy in the fries, they are fried in vegetable oil. I showed him when he got home that vegetable oil is soybean oil. I looked online at the ingredients in McDonald's french fries and they also have dairy in the coating so that right there was two strikes but again, we waited for a reaction and nothing happened.

Through all of this, I really started questioning her FPIES. The dietitian is the one that suggested we take Kara 100% off of dairy and it's been over a month since she's had any food with dairy in it. Here she had had two different foods with dairy and one with a good amount of soy and nothing happened. I thought maybe we could go back to foods that have lower amounts of dairy and soy in them, eventually, after we completed our long list of food challenges.

Fast forward to this morning - she was really, really fussy. I got her out of her crib and changed her diaper, not putting her pajama pants back on her, letting her run around in her diaper. Minutes later, I noticed her pulling at her diaper and immediately smelled that nasty, familiar smell. Brian helped me change her, trying to comfort her and hold her hands while I carefully tried to clean her up without hurting her anymore than she already hurt. Her bottom, from just minutes in that diaper, had lots - probably ten or more, open spots that were bleeding already. Prior to this, i had her bottom all cleared up, it was better than it has been in a long time! She was cranky all day - really fussy and really needy. She just wanted to be held for the majority of the day but wasn't really content with anything.

I'm hoping that all it's a delayed reaction to the soy and/or dairy. I did start her on bananas besides her corn products because I wanted something more to put in her diet and I was pretty sure that the bananas were going to be safe. I guess if she doesn't seem to get better in the next few days than we can blame it on the bananas but my instinct is usually pretty good with her.

Oh, and because all things run in threes, when we got home from going out in the boat today, she got a hold of Brenna's cheddar goldfish that I had in a baggie for Brenna as a snack. So, we're not in the clear yet. I had SUCH a handle on things and this weekend we were cursed.

May this week be better. My kitchen is done, I'm hoping my allergies will settle down so I can breath, sleep, not cough or sneeze around the clock, and that we can move forward with the bananas and then hopefully add a vegetable to the mix as well. Oh, and I'm convinced mine IS just allergies so I'm really hoping my kids don't get sick too! :)

Thursday, August 19, 2010

15 Month Check Up

Kara is on Day SIX of feeling good and NO icky diapers! This is amazing. For some reason though, she is broken out in eczema again. I'm blaming this on the sticky weather and crossing my fingers it's not from the corn products she's been eating.

Tomorrow I am home, my usual Friday off with the girls. I am planning on introducing banana into her diet tomorrow if everything goes as planned. I'm anxious to get a little variety into her diet.

Today Kara had her 15 month check up. She GREW! She's 21 pound, 6 oz. She went from the 22nd percentile at 12 months to the 28th percentile at 15 months! She's in the 45th percentile for height-weight ratio. She's doing great. I think it's the 30 + ounces of Neocate that she's drinking in a day lately! We talked about how she just started walking and she doesn't have many words yet. There's a few other minor things that she's delayed on. I keep saying she's so baby yet and this went to show it. I need to "toughen up" with her, that's for sure!

We discussed her 12 months shots at full length. Each time we've been in she's been too sick to get them and we didn't want to add anything else to the mix. I was prepared to say no, and to hold them off a little longer but as we talked, I decided I didn't want to keep delaying them.. The MMR has egg in it and I talked about how I'm nervous about this because even though her scratch and rast tests came up negative for egg, the GI Dr still wants egg to be at the bottom of our "maybe" list. In the end I decided to have her get both shots. Now I'll be watching her like a hawk and re-thinking the banana trial.

We got another prescription for Elidel for this eczema that I can't seem to clear up as well as a prescription for her bottom. It's a mixture that would be used on colostomy patients since she breaks open right away when she has a reaction and with the upcoming food trials, this could be happening more often that not. (Hopefully not though.)I believe it's a mixture of a yeast med, some kind of stoma cream and aquafor. So, we'll have this ready to go in case it's needed.

We also talked about the bottle. Our specialists have said not to worry about taking the bottle away since she needs the Neocate but the doctor today said to start trying a straw sippy - maybe she'll take to that better than a sippy since she won't touch Neocate out of a sippy cup. I think I'll look at some at the store tonight but I'm not convinced we need to even begin to take it away since she's finally thriving!

All in all, it was good. We HOPE not to be back until her 18 month check up. We need to work on a few things but she's growing so that's all that matters at this point!

Monday, August 16, 2010

Day Three!

We are on day three of feeling good! That awful, awful soy. I still kick myself about it but we made a major turn taking that out of her diet. We've been on day three before of good days only to be crushed hard soon after. Now that I've elimated that SOY out of her diet completely, and am confident that I'll never make that kind of mistake again, I have faith that we'll have good days at least until we start something new.
Kara had a bowl of corn pasta tonight. She ate it right up, was excited to have that to eat. I'm confident that she's going to do just fine on tonights meal. I think we are going to trial bananas next - bananas can be used as an egg substitute in baking so this will really open up some more options for us.
Our fail list is officially RICE, OAT, DAIRY, SOY.

Sunday, August 15, 2010


We've had two full days now of nothing in Kara's diet but Neocate Jr. and Kix as a snack for her to munch on while we are eating. We've also had two full days of "normal diapers" and no tummy aches. Amazing. The barley was hurting her more than anything with the soy in it.
I'm not real sure what our next step is going to be. I feel like I'm depriving her (mostly because of constant comments of "That's ALL she can have???") but she seems to be doing pretty good. I know we should continue this for a good week, right, fellow FPIES Mommies? I need the reassurance that what I'm doing is right because it feels so wrong to not be feeding her like we were but she feels pretty darn good.
What's a good recommendation for a 2nd food to try? I'm not sure the carrots and apples were fails now, with the amount of barley she was consuming at that time that had the hidden soy in it. I'm going to say soy is definitely a fail now though, instead of just a possible! Should I go with a fruit, vegetable, should I trial wheat? I'm looking for something with the most possibilities for meals and also with some filler in it. I feel like we are back to a newborn again because on the formula, she is constantly hungry!

Friday, August 13, 2010

Mommy Mess-Up

So it's no secret that I've been incredibly frustrated with not figuring anything out as far as Kara's diet goes.

Yesterday I'd had it. Kara's been hungry, fussy, just plain old not happy about the lack of food that we've been giving her and her digestive system has had no change, in fact, maybe it's even gotten worse. She's had such minimal foods lately and things haven't cleared up one bit. I started to think we were going to have NO SAFE FOODS for her. This warranted a call to the U yesterday and a return call today with the nurse. They are going to try and squeeze Kara in next week at the U, if not next week, then the week after.

This morning she woke up with a really nasty diaper, as usual. This is the way 3/4 of them are lately. She now has four open spots. It breaks my heart. I just want to cry as I hug her and hold her, try to console her after getting her cleaned up.

This afternoon I came back to my in laws to put the girls down for a nap. I sat down and posted a "vent" on the FPIES message board that I follow and then flipped back to facebook. I started chatting with Joy, a Mom in MN who has a boy close to Kara's age with FPIES. She's become an awesome resource and a great friend in just a matter of a couple weeks. She's gone through so much with her little boy and relates to our journey. She asked me if Kara was on Gerber Barley, in which I answered yes. She continued to let me know that Gerber has SOY in it and this could be part of what's going on because a lot of people who have dairy allergies also have soy allergies and soy is another common FPIES reaction. Maybe you can see where this is going...


Why hadn't I thought of this before? Most importantly, why didn't I ever read the barley label? Wait, I did. WHEN SHE WAS 6 MONTHS OLD! Since we've been feeding her this here and there for so long, I never thought to re-check the label! After I stopped nursing we went from enfamil to soy to Nutramigen. The nutramigen didn't work so we went to Neocate. We cut soy out of her diet (for the most part - she can handle minimal soy) after the soy milk fail. I think that with the barley being fed to her so much lately, she's getting all that soy and it's starting to become amounts that she can't handle. Who knows if she would have eventually had a full blown FPIES reaction or not, I probably would have tossed it off as a barley fail and still never checked the label!

I felt so small finding this out. I'm suprised I held myself together, i wanted to bawl! Joy assured me that these things happen (thanks SOOO much Joy, I'm forever greatful for you!!!) even when you double and triple check labels. I still feel so awful about it.

So, with barley cereal out of the question now I stopped at Cub on my way home from Brainerd. I didn't come home with much - quick barley (which I don't even know if she'll eat), and some malt o meal which is wheat and barley. I don't know that she'll have either one anytime soon - I may just stick with her KIX and Neocate for a few days, as long as Kara will allow, anyway. Maybe the whole wheat pasta will be ok, but for now, we need to find a baseline. This is what we should have been doing for the last week, but with not knowing about the soy, ugh. I'm still kicking myself for not checking that label again.

The FPIES message boards are wonderful sources of info. Many of the Mom's know more than most of the physicians. With FPIES being so rare, it's almost unheard of but these Mom's do their research and put different babies circumstances together to try and figure out the puzzles for their own babies and teach their doctors as they go. They are a powerful group of women and I am forever greatful for coming across this group. Again, thanks JOY!!!

Wednesday, August 11, 2010

What Do We Do?

I'm at a loss as to what to do with Kara. I'm going to call the GI doctor tomorrow. At this point, nothing is working and it's so tough to just NOT feed her the food that she wants. She knows she's missing out and she's miserable. It's heart breaking having to sneak bites of food around her because if she catches you eating, she'll want some too. It's heart breaking to have to tell your three year old she can't have something because Kara can't have it. It's heart breaking having your baby cry and cry and not be able to soothe her even though you know what's wrong.

We went to carrots today because I was almost positive those were going to be a safe food after doing 4(?) 5(?) days of apples and not having a definite yes or no. She had a horrible, horrible diaper tonight. As some know, we are in the process of gutting our kitchen, so I had the girls upstairs playing. Brenna came downstairs and said "Mom, Kara's really fussy and wiggling her butt. I think she pooped." I knew what this meant so I ran upstairs, grabbed her and yelled for Brian to meet me to help out. I laid her down and she was already screaming. I cleaned her up as he held her hands and tried to comfort her. Her butt was so raw it was bleeding. It happened that fast. This diaper also had undigested food in it, again - this is a problem I've been noticing more and more lately and I'm not sure what to think about it. They were steamed carrots, it's not like it was corn, or anything raw!

She was so fussy, pretty much from the time I got her home from daycare. She just cried and cried. I was trying to pack bags up for us to move to the in-laws for a few days since our house is a disaster area right now but Kara wasn't allowing that. I tried to rock her, she cried, I tried to feed her some plain barley with Neocate and she cried, it didn't seem to matter what I did. I finally left, figuring I'd run home later and get what I needed. We gave the girls baths tonight and Kara was so excited to have her bath at Grandma's house. I stood her up in the tub, waiting for her to sit down. She cautiously did and she slowly sat down but the minute her little butt hit the water it was instant tears. She kept trying but you could tell that it was so painful. I just want to cry right along with her as she's going through all of this.

At this point I don't know if this is FPIES or if she has something else going on in her digestive system. Hopefully the GI Dr has some sort of answer for us, or will want us back down there to do some more testing. I sent in her occult blood test yesterday, they'll test it tomorrow and then I suppose we'll wait for the Dr to get back to us with the results. I'm not sure what the heck else to do.

Monday, August 9, 2010


With this new elimination diet and the food challenges that we are starting, I feel like I have a new baby again, one that we are just starting to introduce foods to. You try a new food for 3 days, try another one, and so on. For some reason, we never picked up on anything specific early on, maybe it's because Kara was always a very poor eater and was pretty much dependent on breast milk. Her full blown FPIES reactions were only the 3 times with vomiting to the rice and oat. It's after she stopped nursing that we really started noticing some GI upset going on and that has since increased as she ate more foods.

The last couple days have left me with guilt. I know I can't dwell on the past and we need to move on to get some answers but daily, CONSTANTLY, I'm left feeling like if ONLY that doctor would have listened to our story last January, we wouldn't be in the place we are now. We'd have control over this situation. We'd have specific answers in what she can and can't have. Instead he told me that I NEED to feed her something besides breast milk and when she's screaming in her high chair and won't eat, I can't just give in and "offer her my breast". It makes me sick to think back on that day. We were creating "food aversions" in her, I was told. Kara definitely did have her share of food aversions and still does but we got through them. We had our paperwork going for the feeding clinic but she started doing better with accepting food so decided not to go and we've gotten through it.

We have a pretty hefty bill down at MN Gastro. They are a tier 2 with our insurance company which really sucks so we are working towards an entirely different out of pocket/deductible. This is the same with St. Cloud and our other specialists. Our bills are going to be enormous but we can't put a price on Kara's care. When our allergist told us at our first allergy appointment a little over a month ago that Kara definitely has FPIES, we talked about our still lingering gastro bill. I deal with patients, their bills and their complaints daily in my job and the last thing I wanted to be was one of "those" people who complain so I left this ball in Brian's court. He called down there and told the billing rep our story. About a week later, the day I was frustrated with Kara being broken out in unexplainable hives, the patient advocate called me to get my part of the story. We had heard nothing back and haven't thought too much about it until today, when we received a letter in the mail. This letter states " I apologize that we did not meet your expectations and as a customer service gesture, we will write off the balance of your account..." This was SO awesome to get in the mail today. It doesn't make things ok considering we could be 6 months ahead of schedule with her care but it's certainly a help. Now if only we could get these tummy aches under control and get some more ok foods besides Neocate and barley, things would be awesome. Oh, and write off the rest of these medical bills... :) Our care has been awesome at St. Cloud and there are no complaints there. I'll take that any day!

Sunday, August 8, 2010

Apple Fail?

Here we are on day 2 of the restricted diet and I have a gut feeling that she is going to be failing our first food challenge.

We decided to do apples to start because they are a pretty common food around our house - sippies of apple juice and water for big sister as well as for Kara, apple sauce with supper, or in her barley. In the last month I started questioning if it could possibly be the apples that weren't working in her diet, that's when I decided to start here.

Kara has not had much of an appetite at all the last few days so it's been difficult to get her to eat or drink much of anything. Her diet yesterday consisted of Neocate, barley, dehydrated apple pieces and applesauce. She did have a few bites of corn on the cob as well, because I'm 99% sure that corn is a safe food for her. She seemed to do fine with this.

Brian got up with her this morning and changed her diaper. He got me up because he wanted me to look at it. It definitely didn't look too good and was definitely loose - pretty familiar, actually, and very foul. But, this isn't entirely abnormal for her either. I got a sample of it for day 2 of the occult blood test - I'm sort of starting to think that there is blood in it as well.

We did barley and applesauce again for breakfast which she refused but she did drink a 6 oz bottle. As a snack I cut up apple pieces for her and big sister to eat. She took a few bites of that and threw them on the floor. I gave her the rest of her barley and applesauce which she ate ok. She started to get so fussy so we tried another bottle with no luck. She was really fussy, acting like she was tired so we put her in the crib. She cried and cried in the crib so Brian went and got her. She had another dirty diaper. Dang. Maybe she's failing the apples, maybe not, I just can't be sure yet. We finally got her down for a nap and I'm listening to her pretty restless on the monitor right now. I'm not sure if I should keep going with this or call it a fail, it's really minor so far, if it is a fail. I guess we'll see how the evening goes.

Friday, August 6, 2010

Gastro Appointment

Wow, what a day, but a good one at that.

We got to CentraCare and got checked in, but we were 20 minutes early. Perfect time for Kara to run around after our car ride. The nurse came out and asked for Kara's parents. Uh-oh. I thought "if they think they are sending us home for any reason, they are CRAZY!" She said Dr. S. was running far behind, she had a patient that was taking them quite a bit longer than anticipated. We joked that she'd be running even later after seeing us! She suggested we run and get a bite to eat which was no problem, our appt was at 11:2o and we hadn't eaten yet, so we ran to the deli at the clinic. Shortly after, we were called. On our way into the exam room, Brian said the doctor poked her head out and apologized for running late. Wow. At the time we were roomed, it was only 20 minutes later than our appt time was! The nurse did her thing and within minutes Dr. S. was in to see us. She walked in, again apologizing and Brian joked with her - "no problem, as long as you give us some answers with our daughter!" She couldn't promise us that! :)

Have I ever mentioned how impressed I am with this place? We have had nothing but good experiences here so far! Dr. S. started by asking us why we were here. After a week of that question going through my head, I answered her by saying "Kara has been recently diagnosed with FPIES after months of questioning. We are struggling with this and she's still not "right" so I guess I'd like to start all over and see what we come up with." With that, she listened to our story and asked questions as needed.

Some of the questions were really hard to answer since it's all about her random reactions that we can't figure out the trigger for. (this is going to get kind of icky but what do you expect, it's a blog about digestive problems and a visit to the gastroenterologist!) We were asked specific questions about her dirty diapers. I explained that in the last few days, I realized that I should really be LOOKING at them to make sure things are ok. All I could think about was getting her arms held down by my legs as I change her as quickly as possible, get medicine on her bottom and keep her hands out of there! I told her it's quite a task that normally takes two people to complete! She understood this completely. I told her the smell of these diapers is disgusting and "not right". I told the story of a night not too long ago that I got to the bottom of the stairs to rescue my screaming baby and could smell it from there. After some review, she decided to do the 3 day test for blood in her stool and go from there.

After much discussion and a brief, painless examination, she decided that we are going to start at square one with Kara. Basically, we have no clue what is causing these random reactions. She's now on day 3 of good days but what was it - the chicken? the peas? the beans? something completely random each time? We haven't had good control over this because of the lack of direction. It seems so simple and it's definitely been on my mind this week - Start over - let's just do the formula and see if we can get things under control. I've read about "baseline" in other blogs and message boards and now that we got some direction from the doctor, I'm thinking that's what this means. We are to make three lists. The YES list, the NO list and the MAYBE list. To begin with, the NO list is the rice, oat and dairy. The foods that she's had the shock reaction to, and the dairy being an IgE allergy for her. We are struggling with the YES list. So far I have barley, bananas and neocate on it. The rest I'm up in the air. There are a lot of maybes that I think would be a yes but we better leave them in that maybe column for now. I've been questioning apples - something she's had often but she's also had icky diapers often. She's had beef and pork recently and done decent on it but is it an actual YES? Some of these reactions don't happen until the 3rd, even 4th time of having them. Maybe we'd be better off doing the barley with Neocate and starting there. Either way, this is NOT going to be fun because she knows when she's missing out. I feel like to be fair, we need to not eat anything in front of her. Does she know the difference? It's so tough!

Dr. S. explained that FPIES is a fairly new diagnosis in the last few years, and basically a term for multiple food allergies for now. She's not going to put this dx on Kara quite yet. In doing these food challenges we are going to find out if it's reactions or if she has something completely different all together, or on top of the FPIES. Because of her textbook reactions to the rice and oat, I'm pretty sure she does have the FPIES but the fact that we can't get her back to "normal" (whatever that is) is making us question other things as well. We go back to see the doctor in one month. If we have any problems or are not having success with any foods that we challenge, we will see her before then at the U. If anything comes out of the stool test, we'll be seen sooner as well. We talked about scoping her and at this point she wants to see what happens with the food challenges but if the blood test comes back positive then she'll be scoped right away, the same if we continue having problems.

I asked her what she thought about the chicken, peas and beans. Should those be in the NO column or can we put those in the maybe since we don't know which one it is? She said we can put them in the maybe but at the bottom. (if we ever get to the bottom!) She said the same thing with eggs, since she's only had those the one time. Put them towards the bottom and just be really cautious with them - maybe just give her a half of an egg to see what happens.

All in all, I was very pleased and felt good leaving there. We have a long month in front of us with these food challenges but we'll do what it takes to get some answers for Kara. She's calling me from her crib - it's 8:30 and she's just waking up. Yesterday must have been a long day for her!

Wednesday, August 4, 2010


I am becoming obsessed with finding answers for Kara. It's all I think about all day, every day. I'm brainstorming, trying to get to the bottom of what's causing her reactions, and trying to put things together based on other Mom's experiences. I walk in the door from work lately and go straight to the computer and catch up on the FPIES blogs that I follow, check the message boards on the FPIES group that I belong to now and do my facebook thing in between. I hop on the computer every free second that I have, doing new google searches for updated info. I feel like I'm constantly learning yet coming up with nothing. I know my obsession gets frustrating to my family but I am determined to make things right for Kara and feel that I just can't do enough to care for her properly. Everything else is going to have to wait. I'm exhausted yet my mind is running a million miles an hour and I won't stop until we get things figured out for her.

Kara seems to be having a decent week, despite the mommy meltdowns earlier this week. She's actually had a good last two days and I say that hesitantly because two days is about the maximum amount of time that we get for good days with her. She wouldn't drink her bottle last night so I worried about a tummy ache. She was up in the night for quite a while and refused her bottle so I was worried about a tummy ache. She got up this morning and refused her bottle again, so again, I worried about a tummy ache. I brought her to daycare stating she wasn't acting quite right so call me if there are any problems. Kara had a great day, Mommy overreacted. (Go figure!) Tonight she wouldn't eat supper. I caved and gave her a few crackers because I figured it was better than nothing. She drank 4 ounces of a bottle and that was it. I'm nervous something is going on, or starting but I'm trying to stay optimistic. Friday can't get here soon enough!

Tuesday, August 3, 2010

Better Day!

This afternoon I got a phone call at work from the nurse from the U. She asked me a few questions about Kara, when and where we are being seen and then told me that Kara is seeing the best. She explained that FPIES is a pretty new diagnosis but there are many other things with very similar symptoms that they've treated. She said that this doctor is definitely a good match for what we are dealing with, with Kara. I was overjoyed to hear this! Maybe this will finally be the answer we've been waiting for!

She asked if I had any info about Kara and I explained that I have all of her records from birth. She requested that I fax them to her so she can review them for pertinent information and go over what I had told her with the doctor before we go for our appointment so the doctor will have a better idea of what we are going there for. I got these faxed this evening, all 79 pages of it. I was going through it to see what was pertinent in those 79 pages and each page had something about vomiting, diarrhea, fever, not eating, eczema. I guess everything is!

I got home and filled out the paperwork on family history and concerns that we are to bring with us. My spirits are lifted now and I'm anxious for Friday. Of course, I hung up the phone and felt like I was going to cry again, but this time it was happy tears. I'm praying that we get more answers Friday and this emotional roller coaster will stop, or at least slow down a little bit!

Monday, August 2, 2010

Bad Day!

Today was a bad day. There's no other way to sum things up. Kara has continued to have nasty diapers despite the increase in her forbidden foods. Yesterday we struggled and last night she was inconsolable - she'd lay in arms and scream, I'd put her on the floor, she'd scream, it was just down right awful. Luckily we finally got her to bed shortly before ten and she slept until about 2:30 when she got up for a quick bottle. Have I ever mentioned that I feel like I still have a newborn sometimes? :)

I couldn't sleep last night. Kara and her care ran through my head all night long and it just frustrated me. I couldn't seem to shut anything off. That made for a really rough morning being so stressed out and over tired. We had our typical Monday morning rush of waking up the girls and getting out the door by 7:15. I'm not sure what triggered everything else but I couldn't function once I got to work. I continued thinking about Kara, how nothing has changed, how we still have 5 days til she sees the specialist. I was so tired and it showed. At one point, a friend stopped me on my way to my desk to ask how Kara was doing. I started to talk and then just said I couldn't right now, I was going to lose it. I went to my desk and my eyes welled up with tears. This happened so many times to me today. I finally finished up what needed to be done and left the office at 12:30, at which point I HAD lost it. I had way too much on my mind and phone calls that needed to be made. I left work, not sure what direction to go, home, or for a drive. I called Brian to tell him I was coming home and I lost it. It doesn't seem to matter HOW hard I try to do things right for Kara, we just can't seem to manage to get her symptoms under control. Our allergist wants to see her again in three months. THREE MONTHS. What the heck are we supposed to do for that time? Hope that the GI can figure her out? in THREE MONTHS she'll be EIGHTEEN MONTHS. At what point in this awful "thing" do they really start to worry? I keep thinking that it's not right how they just let us be on our way. What do parents do that aren't knowledgeable, that don't have the support systems that we have? I spend every spare second of my life researching on the internet, reading blogs, reading message boards, trying to figure SOMETHING out that can help my poor baby. How do babies survive when they don't have this group behind them? If I were to play totally dumb, would there be more help for us? There is something wrong here.

I went home, waterworks and all. I decided to get my ipod, hop on the lawn mower and relax. For some strange reason, I LOVE mowing the lawn! It's my therapy! I think it's because it's my alone time, I mow part of our field and jam out to my favorite songs. Brian had one request and that's that I don't sing along. Apparently I've gotten some strange looks belting out the tunes! I let my mind clear, let my eyes clear and then went back inside to tackle my obstacles for the day.

I called the insurance company again to request a case manager. I was questioned quite a bit, put on hold and then the lady came back on and asked me a ton of questions, again, like last time where I'm having to explain everything. THIS is why I want a case manager. ONE person to deal with, who is familiar with our needs instead of having to start over each time I have a question. I held back my tears as I went through our story, my frustrations, and found out that we CAN have a second opinion, we CAN go to any of the "big" hospitals - Children's, the U, Mayo, all of which I figured but wanted to be sure. I was mostly worried about being disappointed again from gastro and wanting to see someone else, only to find out that we aren't able to. They are going to review our case again and I'll hopefully be getting a phone call letting us know they are going to assign one person to us. My fingers are crossed but my hopes aren't that high.

Next I called Fairview GI, the clinic through the U's Children's hospital. (I think, this is all so confusing which group practices at which hospital!) I was able to get to the GI nurses voicemail and left a message. I asked if our doctor that we are seeing on Friday KNOWS about FPIES, and if there are any other GI's in their group that do know about it or see patients because we've really been struggling and if there's someone specific we can see, I'd rather do it that way instead of screwing around the way we have been. I really hope they call me back tomorrow as well. I got off the phone, again, started crying.

What a day this has been. I don't feel good, I'm stressed out, overtired yet can't sleep. Friday's appointment can't come soon enough. I just hope we can start to get somewhere because I'm not sure I can handle too many more obstacles without something positive coming up, first! I'm not quite sure how I'm going to tackle tomorrow either, other than jump right in and hope for the best! Maybe Kara will have whatever "it" was again, out of her system and we'll slide nice and easy through the rest of our week. That would sure be nice.