I’ve been on a hiatus since starting my college semester back up, but I wanted to take a pause and share what’s been going on with Amelia, and maybe help some other mamas out.
Also, I know allergy awareness is next month. I am getting ahead of myself!
I don’t know where to start, or if there is a cohesive theme to this post, but a lot has happened these past few months, and I feel strongly about all of the crazy events that have taken place. What I don’t want is to make it seem like I am venting to a friend at coffee about how hard my life is. Our family has grown so much from the hardships we have faced, and slowly we are finding answers to all of Amelia’s struggles.
Set Backs with Medical Professionals:
Amelia was diagnosed with Food Protein Induced Enterocolitis Syndrome (FPIES) through breastmilk and solids at 6 months. It was a rollercoaster before her diagnosis, and it’s been a rollercoaster since her diagnosis. My general consensus is that, unfortunately, most medical professionals are clueless to Amelia’s syndrome, and that cluelessness has caused her more pain and suffering because it seems to be that many doctors and specialists remain opinionated on subjects they don’t know much about. What’s even more sad, is that since her diagnosis, we were sent on our merry way with little education or advice, and I have learned that is the common reality for most parents who have children with FPIES. On top of everything else, we have had a case where an anesthesiologist completely ignored her allergies during her very first surgery last week.
The bulk of my information I have learned that had positively affected my daughter is through Facebook Groups of parents with kiddos who have FPIES or, more commonly, Dairy/Soy intolerances and reactions. Without talking to parents who are going through it too, I would be in the dark, continually harming my daughter, and clueless on what her diagnosis entails.
The simple truth is most medical professionals are not trained to understand pediatric food allergies that are not IgE reactions (IgE reactions are the type most of us are familiar with; they involve hives, rashes, epipen, and sometimes anaphylaxis).
And thats one of the reasons I felt a need to write this all out:
Moms and Dads who are in the same boat as us… please do not be embarrassed about advocating for your child and questioning a doctor when you know in your gut that something is wrong. It is not uncommon for parents to be dismissed when something is truly amiss.
For six months Amelia suffered because her first pediatrician would not look into any of my concerns. She could only stay awake 45min. to an hour, she was pale, her stools were mucousy and green, when she was awake she would fuss nonstop and grumble in pain, and when it got really concerning she would projectile vomit… I knew something was wrong, but it took me 6 months to change her doctor. Immediately, once we switched, and I was told to cut out Dairy and Soy. My baby was happy, awake and alert, had healthy color to her skin, and had the best looking baby poops out there (how exciting)!
When we saw the allergist for the first time, he diagnosed her with FPIES, and he told me these kinds of reactions could also commonly happen with oats and rice, but really could happen with any food. He said she reacts to the proteins in certain foods, her gut was not mature, and her GI tract would have an allergic reaction to her trigger foods. The only way to find out what those trigger foods are is to trial them one by one… there are no tests for FPIES reactions like there are for IgE reactions.
The best advice I got this far was trial and error… once you find a trigger cut it out and retrial at 18-24 months.
Try we did:
Dairy and Soy- fail through breastmilk
Oats and Rice- fail through breastmilk
Pumpkin- dramatic fail as a solid
Green beans- fail as a solid
Pea Protein- fail through breastmilk
IgE reaction to egg (we found out MUCH later)
We thought there were safes too…I was told only to trial foods 1-3 days, but then all of her safes started to look more and more like reactions: like fails. I felt defeated. I felt like I was doing everything wrong. I found out from parents of FPIES babies that medical professionals who specialize in FPIES recommend trialing for a week! They explained how its not as simple as trying a new food when their guts are so sensitive.
All the way back to square one. Nothing is safe yet.
Of course I was urged by her regular pediatrician to keep pushing solids! At this point my baby had an xray proving she was constipated even after having a bowl movement; her body couldn’t get rid of the waste from solid food. My mom gut told me to give her gut a rest from solids, and immediately Amelia started having bowel movements 1-3 times a day. Her pediatrician ended up telling me she was glad I listened to my mom gut.
During this time (the last month) where Amelia was having constipation and FPIES symptoms prior to haulting solids, her allergist and her pediatrician kept giving me contradicting suggestions:
“she can’t be reacting through your breastmilk“
“she has to be reacting through your breastmilk“
“keep trialing new foods“
“stick to safe foods for now”
“trial only for a few days”
“trial for a week since she’s so sensitive”
“some babies are just constipated”
“this is not normal constipation she needs to see a pediatric GI and a Feeding Therapist”
I pushed for an IgE blood test… I was told that is unlikely the problem, and the test would be unnecessary...
The results came back; she‘s allergic to eggs. The allergist changed their tune, and they told me this must be the reason Amelia has had all these symptoms, and maybe I should cut that out of my diet too.
Weird how after I started avoiding eggs she got better again! Glad I pushed for the blood test!
The worst thing that has happened yet is when an Anesthesiologist gave Amelia anestesia with soy in it, and I had noted her allergies multiple times before the procedure!!! They had even repeated to me her allergies before taking her away! Can you imagine if a poor baby had worse reactions than Amelia, and they passed away while being under from an allergic reaction due to the negligence of a doctor forgetting to check the ingredients in what they were using?
Today, after all that we have been through, the GI Doctor almost completely contradicted Amelia’s allergist. He agreed she reacts to everything I listed to him (after relaying the same story I wrote above), but he considered cases of FPIES to require hospitalization on a regular occasion for it to actually be FPIES. Whatever Amelia had isn’t as serious, but I should still go about testing for trigger foods just as if she had FPIES anyways?
I consulted parents of children with FPIES. I have 35 parents in the past two hours tell me all her symptoms are textbook FPIES reactions (LITERALLY one mom showed me the FPIES medical handbook), and these same parents have never needed to hospitalize their children: they dealt with the reactions at home. At this point, I trust the advice of the parents who have lived through this (sometimes with multiple children) over the many different doctors telling me many different things.
The common consensus was that most parents have found the same struggle of not being heard by doctors, and it took many different changes for their children to actually be helped!!
The social struggles of allergies:
People mean well, but people don’t understand, and it makes things that much harder for me too. They’ll say things like…
- You can have a dessert: it’s the holidays. A little bit won’t hurt.
Her allergies still exist around holidays. This has dairy, eggs, and soy in it. I’m sorry, but I can’t eat it.
- Can’t you just let her try a bite?
I desperately want to be able to just hand my baby food to taste without the fear of her screaming in pain, throwing up, and having bloody, green stools 2 hours later, but this food has multiple ingredients that we haven’t trialed yet, so I know I can’t let her simply taste it.
- Maybe if you make all your food and stop buying purees that’ll be better.
A purred green bean is still a green bean…
- You should come out to eat with all of us! People might think it’s rude if you don’t show up.
I have to research the allergen menu online, and if there isn’t one, I have to call the restaurant ahead of time. Then, I have a young hostess with an attitude tell me to read the menu online. To which I have to politely explain that the online menu does not explain every ingredient, or how things are prepared, and that’s why I am calling to ask about allergens ahead of time. I finally realize all I can have is salad with grilled chicken and no dressing... so, sadly I will pass on the restaurant even though all I want to do is sink my teeth into buttery mashed potatoes, mac and cheese, or a fat cheeseburger.
I am not on a diet. I want to eat regularly without reading EVERY label of every box and can. I want to eat that cookie without knowing I am harming another human if I do so. I do not want to feel guilty like I am poisoning my infant. Food isn’t just food to me anymore: it’s terrifying.
I can’t just switch to formula. Every formula out there (except one) has corn as the first ingredient. Corn is a possible trigger for amelia, and we have yet to do a proper trial. Also, most formulas have dairy and soy. Even the allergen friendly formulas have small amounts of both dairy and soy, and lots of babies still can‘t tolerate that small amount. Not to mention the terrible formula shortage crisis going on. I’d rather let the other babies who can’t breastfeed take all the formula they can get.
Feeding Amelia her triggers will not help her “get over” her allergies. It will irritate her GI tract more and get her to a point where she can’t digest food properly again like what happened this past month.
Unanswered Questions:
But where do I go from here? I am Exclusively Breastfeeding a 9 month old, but her gut hasn’t had enough of a rest for me to start trialing solids again. I am told to trial foods one at a time for a week straight now. Sadly, by her first birthday I don’t know if I should let her try cake. At this point, I don’t even know if her gut is healed enough to break down any solids. I don’t know how long to wait. I have doctors telling me exact opposite instructions. I have many medical professionals who have no idea what FPIES is, so how can they give me solid advice? Do I push back and fight what happened with the anesthesiologist? How can I make people more aware of the struggles of breastfeeding moms and babies with allergies? Should I keep blogging my own stories? Should I make a petition of some sort? How can I spread awareness? How can we make doctors change their knowledge on food allergies?
An even better question: How can we get doctors to stop dismissing parent’s concerns?
Because at this point, I have heard far too many stories like mine.
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