Parenting Adventures: The Specialists #FPIES #FoodAllergies #MomLife

*This series focuses on our adventures in parenting and all the ups and downs along the way*
Welcome back to another "Parenting Adventures" post, here on Savy Mommy Moments.  As you may recall, our last post talked about our sweet baby girl, Savy Baby, and the struggles we encountered when introducing her to solid foods.  This post will be focusing on the next steps for determining the cause of her food and growth issues.  This step includes several specialists, a pediatric GI, a nutritionist and a pediatric allergist. 
First stop, was the Pediatric Gastroenterologist (GI).  At this appointment, they took all her vitals, height and weight and talked about her issues with food and lack of growth. She agreed it sounded like a case of FPIES, but also agreed with our pediatrician that there could be an underlying issue affecting her growth.  So, she ordered a full blood panel looking for anything abnormal with her liver, kidneys, thyroid, heart, vitamin/iron levels and much more.
We immediately left the GI's office and got her blood drawn (not my favorite part).  She was an absolute champ and only cried for a second when the needle went in and then just watched them draw the blood. What an amazing little girl (and daddy for holding her). I stood in the corner stifling my cries.
Savy Baby after her blood draw

The results of the tests came back completely normal and so we had to meet with the GI and our pediatrician to talk about the next course of action.  We decided that we should meet with the Nutritionist and talk about her current diet and see what we could add to fill any potential deficiencies. A few days later, we met with the Nutritionist and after going through Savy Baby's entire diet, she agreed that based on the results and her potential diagnosis of FPIES, she likely is not getting enough iron and protein to help her grow.  So, we agreed to start working in some chicken and fish into her diet, along with adding some iron by adding one bottle of a special hypoallergenic formula to her diet. Just to give you a bit of a background, at this point, she was only drinking breastmilk and eating like 6-8 ounces total a day of a pureed solid food (only carrots or squash) that she hadn't reacted to.
After meeting with the nutritionist, we met with the Pediatric Allergist.  This allergist came very highly recommend by other FPIES moms and was the only one on the approved provider list in the Chicago area.  Lucky for us, she is only a 40 minute drive away and isn't in the city.  At this appointment, we talked through all of her history with solid foods, reactions, current diet, growth failure and much more.  After all of that, she agreed that it sounded like an FPIES diagnosis.  More specifically, she actually believed that she has a form of FPIES (think of it like a spectrum) called FPIGS.  This is basically when a child has FPIES but the only reactions they have are from the gut up.  So, since Savy Baby's only reactions were vomiting to a shock-like state, she felt it was likely she has the FPIGS form of FPIES.  After making this diagnosis, she then decided it was time for a food plan for adding the iron and protein she needed into her diet.  She performed a scratch skin allergy test to determine if she had any type of anaphylatic type allergies to common foods (i.e. peanuts).  This test does not work to diagnosis FPIES food triggers, but needed to be done so that we could rule out any risk of a histamine anaphylatic type reaction.  She passed all of these, with the exception of bananas which was a borderline fail.  Bananas were already a food we avoided because they made her extremely constipated and she did not like them.  The allergist said it's like her body didn't care for them and not that the reaction was FPIES related, but that we should go ahead and avoid them to just be sure we don't have any issues while adding new foods into her diet. After all of the testing, she sent us home with a plan to add a new food every 5 days. The foods she wanted us to add would add nutritional value to her diet, but also were not common triggers for FPIES kids.  She wanted to wait to try and add any of those until after we did more extensive patch testing of them at one year old.
Meeting with all of these specialists and having tests done to rule out other issues, was extremely exhausting, but also very helpful.  It's important that when you have a child with special needs or allergies, you surround yourself with a team that is supportive, knowledgeable and willing to listen to you.  Every single specialist we met with gave us the time needed to fully explain our daughter's needs and issues and worked with us to come up with a plan of action that made sense for our family and her future.

In my next post, I'll discuss our experience with trialing new food and what we have discovered since coming up with a plan of action. 

Know someone who's child may be struggling with FPIES? Here are some resources to share with them:

Facebook FPIES ( Food Protein Induced Enterocolitis Syndrome) Support

The FPIES Foundation Website

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