Sundays with Gage- Finally, a diagnosis

So, last Valentine’s Day Gage was admitted to the ER, put on a ventilator, and transferred downtown to the Cleveland Clinic (my detailed post here).  After a week of testing we were sent home with no answers, just a long list of what it wasn’t.  Another trip to the ER in July confirmed to me (and Jason) that it was a milk allergy even though no pediatrician or specialist agreed with us.  We decided to keep him off dairy until he was a year and half or two hoping he would outgrow whatever it was.

But here’s the thing.  Even though I thought it was a milk related issue, the fact that not one of the dozen or so doctors thought so made me think I was wrong.  Which has made this a stressful year.  Every sniffle or cough had me expecting the worst.  It has made me a bit of a crazy mother.

On his 15 month check up I told Gage’s pediatrician that I wanted him to see an allergy specialist before we let him try eggs and then milk again.  She pointed out that his blood test had been negative and this appointment would really be just to make me feel better.  Despite her (expected) lukewarm response I made the appointment.  And do you know what?  I do feel better.

Within an hour they diagnosed him with FPIES (Food Protein-Induced Enterocolitis Syndrome)

Food Protein-Induced Enterocolitis Syndrome is a rare, severe food allergy of the gut. Classic symptoms to this allergy are delayed following food ingestion (~2hrs or more) and include profound vomiting (often to bile), diarrhea and dehydration. These symptoms can quickly lead to lethargy, change in body temperature and blood pressure, and in severe cases, sepsis-like shock. Immediate medical attention is needed for IV hydration and monitoring.

Finally.  A doctor finally listened, understood and diagnosed almost immediately.  There is no medical test to confirm, but every thing that is described in the pages of information happened to Gage and not one doctor caught it.  It is a rare condition.  We went to a large office and he said they only see 2-3 cases a year.

We still had the skin test done for eggs, peanuts, and shellfish and unfortunately, the peanut tested positive.  See…

So, the good news, we finally have answers about last year’s nightmare and I can stop wondering if every fever will point to a scary disease.  I finally feel validated in my concerns.  More good news?  FPIES is a condition that always corrects itself.  The literature says that by 3 years old 60% of children outgrow it, keep your fingers crossed for Gage.  The not-so-good news is the only way to confirm diagnosis or to see if Gage is better is to book him into Intensive Care and give him milk.  And then wait the rest of the day to see if something happens.  Not something we plan on doing anytime soon.

We are now armed with long-waited-for answers and an epi pen for the peanut allergy. I know he will outgrow at least one of these.  I can live with that.

I’m hoping that this upcoming Valentine’s Day will have a happier ending 🙂

A special thank you to Bonnie (Redlady’s Reading Room) who gave me the great allergist recommendation.

35 thoughts on “Sundays with Gage- Finally, a diagnosis

  1. gautami tripathy says:

    At least now you are prepared. Don’t worry, his allergy will go away when he grows up. My nephew had something similar. By the time he was 3+, everything turned out right. Now he is 23. Gonna be 24 on 29 Feb.(leap year born, you see!)

    You will forget the scary times soon enough. Hugs for you both!

  2. Teddyree says:

    I’m so glad you have answers, it’s so much easier once you know what you’re dealing with and when you know that something is not right it pays to persevere like you’ve done. My eldest son is now 20 and he was diagnosed with severe lactose-sucrose induced enterocolitis when he was nearly 2, it took them about 9 months to diagnose and he was very ill by the time they figured it out. Thankfully after 5 years or so on a very restrictive diet he had no further problems. I hope that’s the case for Gage too xx

  3. Jean says:

    I am so glad you didn’t let the dr. dissuade you from doing the testing. You now know what
    you are dealing with and learn how to deal with it. Plus, you know about his peanut allergy
    and don’t have to have a crisis and have no idea what is going on.

  4. Susan says:

    This just goes to show that you should always, always trust your mother’s intuition! So glad that you finally have a diagnosis and validation for your instincts.

  5. rhapsodyinbooks says:

    Wow, I never hear of FPIES. So glad you got a diagnosis though. My sister is struggling to get a diagnosis for her daughter’s seizures and so far has had no luck. It’s very hard on parents not to know and so know how to fix it!

  6. Gage's Grandma says:

    It is such a relief to know what has been causing Gage’s problems and that he will outgrow the FPIES condition. Hopefully he’ll outgrow the peanut allergy too. We will have a big party and have milk and peanut butter sandwiches! Your mother’s intuition is right on!

  7. Trish says:

    Oh how terrifying! But good for you for listening to your mommy instincts and keeping on looking for a cause. Scott has severe allergies and we feared that Elle would inherit some of these allergies but so far Butternut Squash seems to be the only thing that doesn’t sit well with her. Unfortunately Scott’s particular allergies don’t generally manifest until 10 or so. What a blessing that Gage will outgrow his (at least in part).

  8. Amy says:

    Good for you, Stacy, for following your mom instincts! I’m so happy for all of you that you have the answer now and know what’s going on with Gage. I’ll keep my fingers crossed and say my prayers that he outgrows at least one of those allergies…from what I’ve read and heard about babies, food allergies there’s an extremely good chance of Gage outgrowing some.
    Although FPIES is rare, it’s still a little surprising that none of the doctors who examined Gage came up with it. I guess they get used to seeing the same thing again and again….

    At least you can breathe a sigh of relief that the mystery is over and you now know what to watch out for.
    Enjoy your Sunday!

  9. Stephanie D. says:

    Stacy, you have to be commended for sticking to your guns and insisting on that allergy test. I admire you for that. Challenges like these are easier to face when you’re armed with information.

  10. JoAnn says:

    Finally an answer! Mothers really do know their children best – I’m glad you persisted. Now you know what you’re dealing with and how to handle it. Hugs to both you and Gage.

  11. Kay says:

    I’ll chime in with my good wishes that Gage will outgrow this condition. And, Stacy, I’m so glad that you stood your ground and insisted on the testing. Sometimes you just get a feeling, right? Hugs to you and Gage. Isn’t it odd how many more allergies there seem to be now than there were in past years? Or maybe we just didn’t understand exactly what was going on and passed things off as minor illnesses and such. Good luck!

  12. Staci@LifeintheThumb says:

    Mother’s instincts are the best! I’ve always went with what my gut told me…never let anyone steer you away from that..ever! So glad that you insisted and now you know what is wrong! Bonnie is pretty darn awesome isn’t she???!!!

  13. Jenners says:

    Good for you for sticking to your guns and insisting that he get tested. It is maddening how doctors don’t always listen. I’m so glad you got some answers and that it sounds like something Gage will most likely outgrow! Good job, Mom!

  14. Julie Marx says:

    Wow Stacy. That’s good news and good parenting. Even though hubby works in healthcare, we’ve recently pursued alternative methods of care that have altered our lives for good. We’ve caught ‘problems’ that a regular blood test would never catch until it’s too late. (Just wish I’d known all these things 25 years ago)

  15. Margot says:

    This says so much about the instincts of parents. Mothers/Fathers know best. But it’s so good to have this confirmed by science. I’m glad you’re now armed with information about how to protect that precious little person.

  16. Bonnie says:

    I am SO happy that you followed your mothers instinct and got answers to help Gage! I know what you are going through with all of the allergies as my son was diagnosed at 1 year old with peanut allergy and then multiple food allergies for many years. He still has the peanut/tree nut allergy and a few others but we have learned to be diligent and do whatever we can to protect and keep him safe. I hope and pray that Gage grows out of these conditions! You are in great hands with this allergist and I am so glad that you now know how to manage Gage’s health. Gage is so blessed to have a mommy that is diligent, persistent and follows her gut instinct!! I am here for you and can’t wait until we can meet up for an author book signing or coffee! Pray that we both get there without any car accidents 🙂

  17. Tami says:

    Way to stick to your guns. It’s amazing how often mothers know more than doctors because we’re with those kids 24/7. We insisted on tests on our daughter as an infant. Fortunately, she didn’t have the condition we feared, but the doctor told me “I always follow through when a mom insists something is wrong. They’re usually right.”

  18. Care says:

    Wow – how scary. How do you pronounce FPIES? Do you say eff-pies? like pumpkin pie? just curious. My hub had serious allergies as an infant and since it was over 40 years ago, I wonder if they knew he would outgrow it – he says he did but they always talk like it was a miracle. Truthfully, it scared the crap out of me to hear what his mom went through.

    Yay for medical evaluations that you can deal with and move on with confidence, yes?

  19. thebumbles says:

    I hate it when folks are dismissive – this is when being stubborn pays off. Lucky for Gage he has one stubborn mama. Glad you have found relief and can enjoy your baby boy more wholly now.

  20. Heather says:

    Yes! I’m so glad you were able to find out what’s going on! And yeah to the specialist figuring things out. I wouldn’t go back to that pediatrician. Wow. Here’s to a great and healthy year and month with Gage! So happy for you 🙂

  21. caspette says:

    That is fantastic news finding out the cause and I know its rare but you are now the second person I know whose baby has this! A friend of mine went through exactly the same thing as you; multiple scary trips to Emergency and no doctor able to give an answer. Then she luckily found a doctor (at a visit to the emergency I believe) who knew right away what it was and sent her off for tests to confirm it.

    The sad thing is I dont think the Doctors are incompetant (most of the time) just over worked and have not encountered it before so dont dig deeper.

    Thank goodness you were persistant and got the test again. Hopefully those scary moments are now behind you.

  22. Wrighty says:

    I’m so sorry for Gage but so happy for you that you have answers. Personally, I cope better when I know what I’m dealing with. I hate not knowing and being passed from doctor to doctor. At least when there is a diagnosis I can arm myself with info and come up with a plan for what I need to do next.

    You have done a wonderful job with Gage, especially with the extremely scary year you’ve had. He is so lucky to have such dedicated parents! The scariest times in my life have been when my kids have been hurt or sick. I would give anything to trade places with them. I hope these allergies are soon a thing of the past and that this year brings a very happy Valentine’s Day!!

  23. Megan says:

    I would like to get info on who you are seeing. My LO reacted to sweet potatoes and no one will listen to me. I was also in the CC twice with no answers. Thank you. I’d love a referral to someone who will listen to me.

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