About Links Archive Thats My Cake Follow Me

Our New Normal…

I have been contemplating in my head how to start this story. How far back to do I go?

I would say we knew something “just wasn’t right” from the beginning. The first night at home his breathing was so raspy and sounded horrible. We were back at the hospital within hours of leaving but they said nothing was wrong. He was always uncomfortable, always grumpy, always spitting up all over everything.

I guess it wasn’t until this happened that we suspect something more was going on. Something more than colic or reflux.

Since this day he has had 6 similar episodes.

We visited with the same GI doctor that Aaron saw as a kid. She ruled out anything major and assumed it was probably an allergy.

We made an appointment with an allergist even though I had it pretty much figured out by this point and I wasn’t too worried.

Miles has a condition called Food Protien Intollerance Entercolitis Syndrome. (FPIES – pronounced F-Pies) FPIES is a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. Basically his body just rejects certain foods. It isn’t an allergy. It doesn’t have hives, or wheezing and his throat wont swell up. His body just does everything possible to get rid of the food as soon as possible. And often as messy as possible!

There isn’t a whole lot known about FPIES. The reaction mimics some sort of stomach bug. It happens within hours of eating a trigger food and the vomiting lasts for hours and hours and hours. They often get very lethargic and gray, cold and clammy and have no energy. Thankfully once Miles snaps out of it, he is as good as new and acts like nothing happened. The last episode he had he fell asleep for just a minute and when he woke up he was the happiest baby we’d ever seen. Granted we were EXHAUSTED since it was about 3am. But he was happy and that is all that mattered to us.

Some of the trigger foods for the condition are:

*Grains (Oats, Rice, Barley)

*Legumes (green beans, peas, lentils)

*Dairy and Soy

*Sweet Potatoes

*Squash

*Poultry

His triggers so far have been:

*Oats (2x)

*Rice

*Bananas

*Avocado

*Carrots

Good news is that he will grow out of this by 5 years old.. and no one has ever died from it! Most patients head straight to the hospital the second vomiting starts because babies get dehydrated so quickly. We live really close to the hospital so we got the OK to stay home and monitor him and call 911 if things get bad,

The game plan right now is no new solid foods until at least 1 year. (I begged to let him still eat sweet potatoes and apple sauce, he loves his food so much I don’t want to take it away. Those are the only 2 things he’s been okay with so we are sticking with them)

No milk products until at least 24 months!

Right now he is still exclusively breast fed. I know I wont be able to keep up with him all the way to 24 months. So we will have to start supplementing with formula sometime. Get this.. the formula that he needs to be on. If he was 100% formula it would cost us $10 A DAY! And that makes my endless hours of pumping seem like a walk in the park.

ON TOP OF ALL THAT.. the doctor also wanted to check for “normal” allergies. The kind that make you break out in hives and swell up. I was pretty confident that we’d have no issues there. There aren’t any food allergies in our families so I didn’t think we had anything to worry about.

They test 17 things on his teeny tiny back. It was apparent really quickly that we had a problem or two.


Peanuts and Eggs showed an immediate reaction. There were other not as bad, but Peanuts and Eggs jumped right out at us.

As we stand he has FPIES and can not eat a list of foods that goes along with that. (but I can.. we think…again not a lot is known about it..) FPIES will all be trial and error. Which I hate. I hate making him sick. I hate that he associates eating with getting sick now.

We carry EPI Pens for his anaphylactic allergies (peanuts and eggs.. which I DO have to avoid.. ughhh) and he has an intolerance to dairy and soy. (which I also have to avoid)

We carry papers in each of our wallets and in his diaper bag on for the doctors at the ER, if we ever ended up there, or the paramedics on an ambulance.

We have an appointment in 3 months to discuss his nutrition and how we are going to handle all of this and still keep his weight up.

We count down the days until he grows out of all of this..

Although this is never what we wanted.. it is our new normal and we will all adjust!

***EDITED TO ADD (a year an a half later) Miles has NEVER been supplemented on formula. He has stayed on breastmilk this whole time. It hasn’t been easy, and I haven’t been able to do it naturally, but it’s really important for me to add that in there. ***

Comments

  1. Eric and Michelle says:

    Holy cow! Poor little guy! So what can you and he eat? Till he's five is a long time, but at least it won't be forever… Good luck with everything!

  2. oh my goodness!! this is quite the ordeal isn't it? I'm so sorry! It sounds like you are doing everything you can though to keep your little guy safe and healthy (of course!) – I hope he grows out of this sooner than later (although, his actual food allergies to peanuts and eggs… would he ever really grow out of that? or will he have to avoid those foods for life?)

  3. Jenny McDonald says:

    Holy Hannah! I'm so sorry! At least it won't last forever! If there is anything I can do let me know; I'd be more then happy to help you guys out!

  4. mammabear says:

    It is a scary thing, BUT, and I am not trying to put a damper on things, sometimes they never do outgrow it. (But I have faith that both our kids will)! I am so glad you are breastfeeding-it saved you a lot of early episodes I am sure! My Evan is negative for food allergies but he does have FPIES. And his worst trigger food is dairy-very severe! If you ever need anything I am here for support, we all need to stick together! Always know that you are an awesome mamma!

  5. michele – right now. Breastmilk! Thats about it. He has acutally done okay with applesauce and sweet potatoes. I am too scared to reintroduce sweet potatoes so he has apple sauce occasionally. and like mammmabear said.. there is a chance he wont outgrow it. But I'm hopeful! :)

    susan – probably for life. But we'll see… I'm trying to be opitmistic and send some possitive energy his way! :)

    Hey mammabear – What did you feed him with dairy? Yogurt? We havent done any dairy so i have no clue with that and FPIES but he show intollerance signs.. Our guys are kind of opposite on triggers! I wonder what he'd be like with dairy. (Not that I am going to be trying is. just wonder..)

  6. Oh my goodness – I'm so sorry you and Miles are having to go through this! At least you know now, even though so much of it is still a guessing game. I can't imagine having to go through all of this – you are such a good mom! I'm sending positive thoughts your way that he will grow out of it – especially before 5 years old!

  7. Good for you, for having such a great attitude about this! You are SO right-this is your new normal. You guys will do great. Yes, it will be a challenge, but what in life isn't? We will keep you in our prayers, especially that you will have patience through this transition. Love you!!

  8. Oh no, poor little Miles. I guess the bright side is that he will grow out of it, but I know that doesn't make things any easier right now. Five probably seems really far away. But it seems like you and Aaron are in the right frame of mind to meet this head-on, and Miles is so lucky to have you as parents! I'll be thinking about you!

  9. My thoughts are with you and the family. Hugs to all of you! You will make it through it and all of you will come out stronger for it.

  10. Oh you guys…. I haven't been by in quite a while, but I'm glad I stopped by this morning. I'm so sorry to hear that Miles has 'issues', and yet I can't help but notice how positively you seem to be handling. Yes, it sounds like such a pain to have to deal with and it must make you hurt to see him have to get so sick on trial and error, but I am so glad to hear he will hopefully grow out of most of it!

    Also very glad to hear you are breastfeeding… I never planned on being a 'long-term' breastfeeder, but when my 2nd son had health issues we breastfed (along with solids) 28 months!

  11. Anonymous says:

    I'm so glad that you finally found out what is wrong with Miles. Now that you know.. it'll take so much stress away. You are good parents and I have faith that it will all work it's self out in the end. Best of love.- Norah

  12. mammabear says:

    The dairy was in Gerbers custard 2nd foods…scary huh? He went into shock within 1 1/2 hours, completely lethargic, I thank God every day that I never had issues with breastfeeding from the beginning. I completely agree with you as far as reintroducing foods he did well with in the past. I am like that too. Evan did fine on 1 kind of oatmeal that was dairy and soy free-the organic one. I bought it 2 weeks ago…have yet to reintroduce…I try so hard to be positive, but it is so scary, and also my new normal. Good luck and my email is jenhargreaves@comcast.net. Email me anytime, I look forward to it!

  13. hey ryley, how opposed are you to alternative medicine? Accupressure? Chiropractors? etc? I have a neice that is eight, has spent at least five weeks out of every year in the hospital her who life because of allergies. She had a list of five foods she COULD eat. . . and now she can eat anything she wants. . . and hasn't been to the hospital in over a year. if you are interested let me know. . . i will give you the info. . . her accupressurist specializes in childhood allergies and food INTELEROUNCE (sp?)

  14. it is all very non intrusive. . . very safe. . . what it does is take things that your body responds negatively too, how ever it responds, and trains your body to respond differently to it. My sister-in-law keeps trying to convince me to take Kendell because of her severe reflux, I just haven't had the time, it isn't that pressing to me. But if you want, you could at least give it a try. Once again, it isn't just food allergies, but any type of allergy or intolerance. She had severe reactions to eggs to the point that she couldn't eat anything that was even cooked with egg whites. . . she now eats scrabbled eggs, and loves them. Really let me know.

  15. Just wanted to say hello from another mom of an FPIES baby (now toddler). I just read your story "12 hours ago" – so similar to our experience with our daughter. I pumped for 11 months so that my daughter could have exclusive BM….we have been doing Nutramagin since then (she is almost 22 months old).

Trackbacks

  1. […] Discovering Miles’s Food Allergies […]

  2. […] feeling frustrated/overwhelmed/whoa-is-me lately about Miles’s food allergies. Or maybe not “his” food allergies, maybe just food allergies in general. It may be […]

  3. […] the drool brought on by the teeth) August brought doctors appointment after doctors appt and more bad news. But August also brought a new grown up baby with a stylin hair cut. September brought us STANDING! […]

Speak Your Mind

*