"I wonder if his belly hurts and that's why he won't eat."

Friday, July 22, 2011

Hey FPIES, Thanks for the adrenaline flu you just gave me.

Holy crap. My worst fears have just come true. At dinner Bronsen was begging for some peanut butter crackers. He doesn't really like peanut butter but he tries to act like he does. He found some crackers at my parents house awhile back and he eats them every time we go there. He went and grabbed some last night and asked me to open them. I saw the back and opened them, and he started eating them. While I did 234352 other things I was reminded that maybe I should quick check the package in case it was different. As I looked below the label, where the allergens are listed in bold usually, I saw the words...."Contains MILK, peanuts, soy, blah blah" I snatched them out of Bronsen's hand and said don't eat any more. I stood there looking at him as if I expected an instant reaction. I went to the pantry and pulled out all the peanut butter crackers my parents had. Of course, 4 more packages in there, a few Kroger brand and a few Keebler brand. Almost identical packaging, one was "safe" and didn't contain milk, the other did in fact contain milk, well "milk, whey, cheese cultures and buttermilk" to be exact. I quick grabbed the phone to call allergy and ask for suggestions. They called back and said they didn't think he would react, considering his latest test results. I felt the same, my husband did not. Well, hours went by, and no reactions. We kept saying, "Bronsen, does your belly hurt?" He would reply, "Nope, not even from the milk I ate. I think I can have milk now." We've been talking a lot about FPIES and about how he can probably have milk soon, which would allow him to eat whatever he wants for the first time in his life. Late last night we said to him, "Is your belly still ok?" He replied, "Why do you keep asking me that? I'm FINE!" So, I guess going into the milk challenge in the hospital I won't be as worried, but afterall, 1/2 a cracker isn't exactly a "food challenge" so all we can do is wait and be hopeful. I do have to say that once again FPIES caused a problem, even though it wasn't with Bronsen. For the rest of the night my stomach was on edge, probably from the rush of adrenaline I had for quite a few minutes after Bronsen ate the cracker.

I really didn't think this day would ever come.

I spent the nights right after Bronsen's diagnosis in tears.  The reason I cried the most was because age 3 seemed so far away and how was I going to deal with "this" for the next 3 years. We didn't know if he would ever outgrow it, I knew it wouldn't be before age 3 and that it most likely would be after. How could we send our son to school, when food could really harm him? Any thoughts at all about how we would manage his FPIES or thoughts about him not being ok with any foods would send me into a tearful breakdown. It usually happened at night, away from everyone, when I held him in his room after one of his feedings.  Since he was so young when he was diagnosed we really didn't know if he would ever have "safe" foods. I thought my kid would be on breastmilk for a really long time and there was a chance that formula would not be safe.  Of course laying him down was always hard, since his big reaction left me traumatized. I had fed him a supplement of formula and layed him down, only to hear gurgling from the next room a few minutes later. He could have choked, and maybe he did before I came in. Maybe I heard him just in time.

A lot has happened since he reacted at 10 weeks. Lots of testings, a food challenge in the hospital which required an admission, an IV and an 8 hour stay. Bronsen has had a few IgE prick tests, for regular food allergies. The initial test just after he was a year old, showed a very positive result for milk. We've had him tested 2 times since then, for a total of 3 IgE prick tests. Just a few months ago during a prick test we noticed that his milk positive was still positive but now the size of a small spider bite, rather than a large more allergic reaction to a mosquito bite which is what his original IgE prick test looked like. It's sad but that small positive was reassuring for us. I had high hopes for the next IgE test.

We took Bronsen to the allergist in June, for his regular checkup, which we do every 6 months.  No issues, nothing new, but we had actively added soy to the point where Bronsen can have as much soy as he wants, we don't measure or keep track anymore. He drinks soy milk and eats edamame until he feels like stopping. The Doctor did an IgE test and it was negative for milk. I was hopeful that it would be but I surely was expecting the worst.  I just didn't want to get my hopes up. We could not do a milk challenge unless the IgE prick test was negative, a blood test was negative and a patch test (for FPIES) was negative. But any test that was negative was a step in the right direction. Because before if Bronsen was to ingest any form of dairy or milk his throat could have swelled closed, and his FPIES would have caused vomiting.  This would have been a horrible combination. So with the prick test being negative I knew that I could worry less about the swelling part, and focus more on whether or not he still had FPIES to mik.

Thankfully, all 3 tests were negative, but the blood test did show a slight positive to one form of dairy/milk that they tested for, but it only showed up as a .48 on a scale that goes up to 100. So after all this, our Doctor will call us to set up an in hospital food challenge for some sort of dairy product. We aren't sure if it will be milk, or if it will be something with milk baked in it.  We are waiting for the Doctor to call us with a date for the challenge, it's not easy to schedule since Bronsen needs to have a room and a bed at our local children's hospital. Also, food challenges aren't usually done in the hospital.

Sunday, October 24, 2010

Bronsen's "safe" foods (foods we've given him)

First I'm going to list all the foods I can think of that are safe for Bronsen, those we've actually given him. In a later post I'm going to list actual brands of foods we use. This way, those of you FPIES mom's who are reading can check out our similarities/differences.

Rice     Wheat    Barley   Pork 
Egg     Oat     Carrots  Beef  
Broccoli     Cauliflower     Onion    
Apples     Peaches     Melon (all)
Plum     Grapes     Celery     Chicken
Pumpkin     Zucchini    Strawberries
Blueberries     Raspberries     Pomegranate
Tomatoes      Basil          Oregano       Thyme

Sugar (beet) Sugar (brown) Sugar (powdered)
Oil (all but peanut, we've never tried it) We mostly use Lighter flavor EVOO

Rice Crispies
Potato chips (salt or salt and pepper only)
Cheerios (frosted, regular and apple cinnimon)
Fruity Pebbles
Quaker oat squares (cereal)
Hot dogs
Cresent rolls
Best life "buttery" spread
Spaghetti sauce


Sunday, September 26, 2010

Our FPIES journey (grab your tissues)

1 day old : projectile vomiting 1 minute after ingesting 1/2 oz of formula supplement in hospital. It was whatever free sample they give you that comes in the small nursette bottles.
(Why did the nurse humor my request to feed him? She must need to go back to nursing school. She simply could have told me my milk may not come in for a few days. I was a new mom, I didn't know and I was a wreck thinking about how hungry he must be.)
The nurse said he must have drank it too fast. Then she said she'd never seen such a lethargic baby. This didn't help the way I already felt. I knew from that moment on that something was wrong. I knew my baby was perfect to me. I didn't want to think about him being not perfect. I asked her what the house Pediatrician said and she explained the tests they did and that he tested fine in everything. We took our sweet baby boy home. I cried a lot. I listened to what others said about it being a fluke. I still looked forward to the Dr's appts to come, with his Pediatrician, so that I could hear again that he was fine. We went a couple of times to check his weight gain, I was breastfeeding and he would not latch on. Can you blame him? Just a couple days old and having the worst belly aches ever. Well, ok, not "ever." He gained weight fine. He was always on the lower percentile for things. Born at 8 lbs even and slowing gaining.

4 weeks: I don't really remember this reaction that well. I remember that he projectile vomited. Oh wait, it's coming back. I gave him a supplement again and hopped in the car to go pick up a friend. We were going on an outing to a friends house, then shopping. I heard Bronsen throwing up in the backseat and of course I could see him in the baby mirror. Covered in it. All over the seat of the car, all over him, all over his car seat. I remember him being lethargic but he only vomited that one time with that reaction.

6 weeks: We were getting ready to go to a friends birthday dinner. We were dressed and ready to go. There it was, projectile vomiting again. I called my friend. I was crying, I was screaming, I was inconsolable. She helped me. She said, "Maybe he ate too much, maybe he is going to be a "spitty" baby." The thing she said to me that I will never forget, and it is very true, "It always looks like so much more when it comes up. Like a lot of throw up but it's probably just more like spit up." I told her it was all over my bed, it was puddling. Lots of it. Soaking through the bed, the comforter and on to the wall. It was everywhere. I knew something was wrong. I mean, it just wasn't right. Why was this happening to my baby? I told my friend we wouldn't make it to her birthday party, the drive was over an hour long. There was no way I could take him out. She totally understood and told me to keep her posted. I remember that Bronsen wouldn't nurse for like 4 hours after that and he was waking every 2 to eat other than that day. After he nursed he fell asleep. I didn't. I continued to cry. I cried all night. My husband told me to call the dr in the morning. Not Bronsen's dr, my dr. He was sure there was something wrong with me for thinking there was something wrong with Bronsen. Hours went by and Bronsen was not waking up. He slept for 9 hours. He was hard to wake, wouldn't eat. I didn't sleep much so I knew he was ok. Wait, did I? He vomited 2 more times that morning. But would eventually nurse again and start acting ok. The next day we called the peds anyways and they saw him. Typical answers from dr's before FPIES diagnosis = must have been a touch of the flu. He was eating fine on that day I took him in to the dr's and he looked and acted ok, too.

10 weeks : Worst. Day. Ever. Bronsen was crying. He wouldn't latch but wanted more food. He was restless, unhappy, and just wanting something. I gave him a 3 oz supplement of whatever else they gave us as a sample at the hospital. I remember that his time I gave him something different. I gave him a different brand, not a different type. 3 oz was the biggest supplement I had given him. I called my husband and told him that I gave him a supplement and I hoped it would help his belly be full and he would sleep. I remember telling him I gave him a different kind. Soon, Bronsen was sleepy so I put him down in his cosleeper in our room. Keep in mind, I really never had even put him in it and left the room before this. He slept in it, attached to our bed or in my arms all the time. I had already forgotten I gave him that supplement. I only forgot for a minute. When I heard coughing and gurgling I quickly remembered. I ran into our room. He was covered. His bed was covered, his hair and sleeper both covered, too. I took him out into the living room, holding him under the arms. He was sick. I asked my husband to run his bath water. He started it but during that time Bronsen continued to gag and began to vomit bile. From my background, bile was a dangerous sign. I yelled for my husband to get the peds number. He came to me and looked at me like I was a nut. I called the after hours nurse and she said he was probably ok but to take him in anyways. He was out of the bath and in new jammies within 2 minutes we were packing a bag and in the car. He didn't look good, he was turning bluish green and he could no longer hold his head up. (Tears). I chose to sit in the back seat, during a sleeting rain, and hold my child. He was very sick and choking on his bile. I had to suction him every time he gagged. My husband drove us to the nearest Childrens hospital. 25 long minutes away. I ran in with him, screaming and crying and they looked at me like I was nuts. As we went into triage I felt Bronsen's diaper explode. Green, mucous, and lots of it. I changed him quick and went to a different room. A dr came in and felt his head and talked to us. Within the blink of an eye, our lives changed. The dr rushed him a few rooms down, other doctors and nurses swarmed in. The layed him flat gave him oxygen and started trying to get an iv. They took me out of the room and told me in 30 minutes they would know how he would respond to treatments. The head of Pediatrics said on a scale of 1 to 10 with 10 being the worst condition he could be in, he was an 8. My legs got weak. I fell to the ground and immediately prayed that this child not be taken from me. Minutes went by as the staff tried numerous times to get IV's in. By this time he was so dehydrated. They poked him at least 6 times before they got 1 line, in his leg. They got a 2nd line in his other line just in case 1 failed. They rolled him over and did a spinal tap, while he was awake. I watched. Soon I was able to go in. Within a few minutes his color was back, he looked good despite all that he just went through. He continued to do well during all the tests, none of which would give us an answer as to what happened. I told the staff that I knew in my heart it was the formula doing this. What else did I give him? Nothing. Did I drop him on his head? NO.
We were admittted to the hospital and stayed for 4 days. Bronsen never vomited or had another gross diaper while we were there. It's hard being in a childrens hospital with your child who is there with a lot of other kids with a lot of other lifelong problems. I didn't know what was wrong with Bronsen, but I was already thankful.
On the 4th day we decided that we weren't staying a 5th. Every day tons of dr's and students came in. None of which mentioned FPIES. None of which had any clue. None. What happened next will always be interesting to me. A referral to an Allergist we would see the next day. They wanted us to leave the hospital Monday am and go directly there. Uh, what? Allergist? I am not clean and I haven't slept. I would never remember what an allergist was about to tell me if I didn't go home. Since Bronsen hadn't had reactions and was doing fine since he had the initial fluids (including nursing fine and all that) we decided to leave. We went home, all cleaned up and got a good nights sleep. They told us not to give him any formula. The next day we walked in to the allergist office. We said hi and introduced ourselves. The allergist was like, "Ok, so Bronsen has FPIES." Just like that. I'm not joking why is this allergist a part of the huge hospital we were at and knows the drs we saw but yet none of them know about FPIES or had even heard of it and he was diagnosing Bronsen with it? Unbelieveable. We talked more about it and were instructed to not give Bronsen any more supplements. If we needed to we were told to only use Alimentum or Nutramigen. Our allergist said there is really no chance he would react to them. That day he did a prick test for regular allergies. All things negative except for milk. Yup, he has a regular food allergy (IgE allergy) to milk. Go figure. We set up a patch test.

We took Bronsen home and started to research FPIES. I cried all day and all night. I held Bronsen and tried not to think about the future. I hadn't read enough in to FPIES to know too much. I didn't know how fast the years would go by. I thought 3 years seemed like forever. I didn't know that we could add food along the way and that we would and that the allergist would help us. I just wanted my perfect on the outside baby to be perfect on the inside. I didn't want him to hurt. I didn't know what to do.

I continued to BF Bronsen until almost 12 months. We added fruits every once in awhile. Bananas were first. He loved them. Our allergist said it would be unlikely for him to react to fruit. He had lost a few oz and the peds said we really did need to supplement. We tried alimentum. I made a little and put it in a bottle. 2 oz. He chugged it, didn't seem to mind and was happy. Of course, I waited for a reaction and there was none. From that night on I decided I wasn't going to half breastfeed half formula and not know what he was getting when. I decided a year of breastfeeding was perfect. I was, in fact, still nursing him at this point while 3 months pregnant with our second child and while we went through a miscarriage. I thought I did the best I could. Soon we decided to switch to Nutramigen, sounds bad but we were getting alot more coupons for it than we were for Alimentum. That stuff is expensive. $25-$30 for one can. So not cool. But hey, it was going to make our baby happy and help him gain weight. We began ordering it from Ebay and Grandma's and Grandpa's would give Bronsen the occasional gift of a can of formula. His first Christmas his stockings were full of yummy, Nutramigen, goodness.

Next allergy appt before first food challenge we did our first patch test. He tested negative to everything. Oat, wheat, rice, beef, soybeans, and something else but I can't remember what it was.

15 months: First food challenge. We challenged rice, in hospital, iv's in place and shock kit on hand. Bronsen couldn't eat for like ever before the test. Our allergist mixed rice flour into applesauce and he had to eat a certain amount in a certain amount of time. He did and he passed. He was the only kid running laps around the hospital with an IV in his arm.

From there we added wheat, oat, barley in a variety of ways. We were able to do food challenges at home with those. He passed all of them. And they took forever!

Just before age 2 I think...: beef in office challenge. We brought our own plain beef cooked and all beef hotdogs. The allergist grabbed our hotdogs and read the label and told us that not many hotdogs are safe. (We've found quite a few since.) Why did they try to make us give him baby food beef? Are you serious, that stuff smells like cat food. Babies eat it but he was almost 2 and had never had anything like that before. We managed to get it in him by tricking and bribing him. He passed and we were excited.  We've since done another patch test and another prick test. He had a positive prick for milk again, although the reaction spot was smaller this time. Our allergist won't patch for milk because of the regular allergy to it. We aren't going to give it to him anyways.

Up to age 32 months (his age now) we've added pork, chicken and most recently eggs. He has passed all and hates eggs. He is 1 week off of Nutramigen and drinks 3-8 oz rice milk sippys a day. He refuses to eat breakfast. We are in the works of planning out our soy challenge.

What I don't get about our allergist is that some of the info he has given us has been proven wrong by all the other FPIES parents I talk to. Many kids react to fruit, many kids react to their mothers breast milk and many kids react to Alimentum and Nutramigen. He told us reactions to those were unlikely. Bronsen hasn't had a reaction since 10 weeks, so between what we are doing and what he is saying we are doing well. I think we got really lucky. Yeah, Bronsen has FPIES but we are still lucky.


To begin with, it's pronounced PIES like apple PIES but you have to say the letter "F" first.

FPIES stands for Food Protein-Induced Enterocolitis Syndrome. The way I explain it is that my kid has food allergies similar in severity to one with a peanut allergy, except to almost everything. I say it that way because when people think of an allergy they think of a rash. Then they think that it might be ok if Bronsen just has a "little taste" of something he's not supposed to have because maybe then he won't even get a "rash." WRONG.

FPIES (so we are going to get all techical right now) is actually a non IgE mediated reaction in the gastrointestinal system to one or more "trigger" foods typically found in infants and young children. 

Traslation = FPIES is not a regular food allergy, like when you go to the allergist and they prick your arm. It's not something treatable with Benadryl.

FPIES reactions involve: vomiting, diarrhea (sometimes bloody or mucousy) and can eventually and quickly lead to lethargy, dehydration and shock. (Some children with FPIES have more symptoms that these listed.)

Translation = usually within 2 hours after the trigger food is consumed a child will start to present sypmtoms. It all happens very fast. Lots of vomiting and diarrhea quickly lead to dehydration.

So here's another deal. Kids with FPIES aren't any more likely to have regular food allergies than kids without FPIES. Strange but I think a lot of kids with FPIES do have regular food allergies as well as FPIES. FPIES is most often treated by an Allergist.

Saturday, September 25, 2010

Twice baked eggs

Today I had an amazing idea. It all came to me while my Mom was here visiting. I was headed out to run a few errands when she said, "Stop and pick us up some Subway on your way home." Immediately, I thought to myself, "What am I going to feed the kids?" Ding ding ding. Amazing. Why hadn't I thought of this before? Bronsen can totally have Subway, right? Why not, he eats bread, all kinds of meat, and some veggies. What else is Subway anyway?
I went straight to Subway and asked for the "ingredient information." Everyone knows Subway brags about their "nutritional information" but where is the stuff I need to know for my kid to benefit from the nutrition good ole Subway provides. The skilled sandwich maker looks at me and says the same thing everyone else says when I ask that sort of question. "What do you need to know?" Uhhh, come on. Just tell me where I can get the information, I'm still going to buy the stupid half of a 6 inch sub for $4. "On our website," she says. So I ordered a kids meal for Bronsen, a veggie sub kids meal. Yup, I paid $4 for that half a 6" and then I asked for just lettuce. I wanted to make sure I got my moneys worth.
When I got home I quickly woke the kids up and told Brosnen I had a surprise for him. This was after I went to the kitchen, unwrapped the 1/2 er, added his salami to it and wrapped it back up. I had to make it real. I showed it to him and his eyes lit up. He actually would get to eat the same food as us. I wouldn't hear the words or see him point and say, "Bronsen likes that,"all while being careful not to touch it because he knows it could make his belly hurt. Amazing.
How quickly I forgot about checking the information on the bread. I had to check to make sure it didn't contain soy flour, as many breads do. As the sandwich artist said, "Well it doesn't have milk in it. I know because there is someone who works here who is a vegetarian." What, um ok. I ran to the computer and began to obsessively search and read through all of Subways ingredient information, you know, for next time. Then I smelled something burning. Kitsen's eggs I was making her for dinner. I burnt the eggs and had to make them over again, all because of FPIES, all because every single day is a challenge.