About

I am not sure how to start this "About" page, but here it goes.
Rhett was born April 2011.

When he was born he did not know how to suck, so he was given formula in the hospital until I was able to pump milk for him. We were taught how to feed him with a medicine cringe. Nurses blamed his constant crying in the hospital on not getting enough to eat because of his lack of sucking. Once home we fed him only breast milk through the cringe, but he still cried a lot during the day, most of the night and spit up often. If spit up is even the correct word to use for how much came back up. It was a lot. We then decided to supplement with formula again. He still cried as if he were in pain, spit up a lot and didn't sleep like most infants do. His Doctor said that Rhett was a colic baby.
We blamed crying on gas pains and went through numerous bottles of Mylicon drops and gripe water. 

  

This continued for months. I remember when Rhett was a few months old and my husband worked the night shift, Rhett was screaming in pain. It was close to midnight and I realize in the past 48hrs, I had only slept 4 hrs. I kept telling myself, this is not normal. 

At 9mths old I stopped breastfeeding because we then realize breast milk hurt him and used formula only. The vomiting, blistering acid rashes, diarrhea and spitting up continued.

His Pediatrician suggested we try a soy based formula instead and it didn't help much.

She then diagnosed him with severe acid reflux. 

During this time he had also been on rice cereal, oatmeal and other baby foods like bananas, peas and sweet potatoes. At the time we did not notice anything different when eating baby food because he still had reactions going on from possibly the formulas.  

 

At close to 11mths old we stopped formula and started cows milk. The vomiting, diarrhea, rashes and screaming in pain got worse. They labeled it a "dairy intolerance".

We put him on Almond milk and watched him closely for any signs of a nut allergy because normally you do not give children that young anything with nuts. Rhett did really well on almond milk and we could see a change. Once we got that figured out we started feeding him table foods more often. 

At age one, Rhett had his first egg. A couple hours later he was so sick. Pale, severe vomiting, screaming, the blistering rashes appeared, diarrhea and he laid around like a little ragdoll. Days after he recovered we tried the egg again and the same things happened. This was an eye opener that something was definitely not right. We took him back to the pediatrician and she referred us to a allergist and Rhett's (SPT) Skin Prick Test came back negative for allergies. The allergist said he was clueless and had no idea what was wrong with Rhett.

We started noticing other foods making Rhett sick like the bananas and cinnamon we had been feeding him and decided to try another allergist. He also had no idea what was wrong and labeled it a "rare food intolerance".

His pediatrician thinks it's allergies, but does not understand why his (SPT) Skin Prick Test came back negative for the food allergens. During this time I also brought up about seeing a pediatric GI and the Dr did not feel it was necessary at this time. The pediatrician office thinks Rhett has the stomach bug every time when we call concerned about the severe vomiting and diarrhea. They also constantly want to run blood or stool sample tests. Which also come back negative other than it did show that Rhett is anemic.

The week of Christmas 2013, Rhett had a accident exposure to egg and cows milk.

Rhett was sick with vomiting for 8 days, diarrhea for 2 1/2 weeks , he was weak and at times looked like a ragdoll. It was emotionally and physically draining for my husband and I. We took turns keeping an eye on him in fear of him getting too dehydrated. Rhett lost a whole diaper size while sick. The pediatrician kept saying it was a stomach bug and we stopped calling the Dr's office for advise because we only heard the words "stomach bug" and "let's run some tests". I gave into another stool sample in hopes she would send us to a GI specialist. Of course the test came back neg for what the Dr was looking for and she would not send us to a GI. We knew it was because of the egg and milk, but getting others to see that was impossible. I requested to see a pediatric GI twice during this time and no one would refer us. 

During this reaction I search the internet for help. Some how I came across FPIES. I then met a mom online who helped me understand FPIES better. I continued to educate myself on it and then contacted the pediatrician again. She said no to FPIES and no to a GI referral. 

In then met a local mom who has a son with FPIES and she also uses the same pediatrician office that we do. She suggested seeing a different pediatrician who she thought might know about FPIES. We made the appointment, but the Dr was not very educated on FPIES. She did want us to see a GI specialist though and referred us. I thought, FINALLY!

We got in a couple weeks later and she was amazing. She diagnosed Rhett with FPIES and possible EoE. EoE is diagnosed with a scope procedure and she did not feel it was necessary at this time to put Rhett through that. They very next day we had a appointment with a allergist. He too diagnosed FPIES and possible EoE.

So, almost 3 years later we have answers. 

  

Today we have a better handle on what Rhett can and cannot eat. 

Accidents still happen and on those long days (sometimes weeks) of being sick from the "trigger foods", we are all emotionally and physically drained. But, knowing we can now head on over to the ER for help without being told it is a stomach bug, is a huge relief. 

  This picture only shows a peek of Rhett's funny personality. He is a joy and brings much laughter to our family.

Rhett's favorite food and treat is French Fries. Not the most healthy food, but it's something he enjoys that does not hurt him. Apples, grapes, rice, broccoli, chicken and veggie chips are some of his safe foods. Mommy has gotten pretty good at baking and cooking meals that are free of Rhett's "trigger foods". We try to keep our home free of the foods Rhett cannot eat.

Having a child with food allergy is extremely overwhelming at times. Until you know for sure what foods make your child sick, preparing a normal everyday family meal can become stressful. Once you have a list of your child's "trigger foods", going to a fun birthday party can bring on anxiety. Family reunions and big holiday events can become a nightmare waiting to happen.

Now that we know why Rhett gets sick off of certain foods, we have been educating ourselves more about this type of food allergy. I feel like I'm reading a book about my own child. Watching a video of a child with FPIES going through a full blow reaction, is like watching a video of my child going through his reactions. 

It's heartbreaking to watch, but worth watching to get a better understand of just how serious it is to keep a child's "trigger foods" away from him.

Any food allergy can be terrible, but FPIES is NOT your typical food allergy. 

Benadryl or a EpiPen will not help. Once a child ingests one of their trigger foods, they have to go through the pain, severe vomiting and diarrhea for days and sometimes weeks.