How Can You Be Allergic to Rice?!

I promised yesterday to do some posts over the next few weeks that are "flashback" posts so Braxton's story can be told as a whole.  This one is particularly difficult for me to do, as most of what happened I would much rather forget!

Occassionally, when trying to explain B's condition, we will run into someone who says something like, "It's impossible to be allergic to rice!"  FPIES has taught our family that a lot of things people say are impossible are not only possible, but probable.  One of these possibilities is being allergic to rice.  Braxton, most definitely reacts to rice... Braxton has always had problems with vomiting.  He started vomiting almost immediately after the first time he nursed just minutes after he was born in the hospital (more on this in another post).  The vomiting has continued through today.  Our initial diagnosis: Reflux (GERD).  B was placed on two reflux medications simultaneously because the vomiting did not stop after weeks on the first reflux medication. When the second medication failed to stop the vomiting an upper GI scan was ordered to evaluate for anatomical abnormalities.  The scan came back "normal," but showed that Braxton experienced slight aspiration and slight reflux.  We were told to add rice cereal to his bottle to thicken his feeds to prevent him from aspirating. At that time, he was only 6 weeks old.  The day after the scan, we added the cereal to his bottle.  What unfolded that night continues to have an impact on our family to this day.

About two hours after Braxton took his bottle, he began vomiting.  This was different than the vomit we were used to seeing every day.  He vomited over and over again until his stomach was completely empty.  He then began to vomit bile.  He became extremely pale and his breathing became rapid.  He seemed to barely be conscious.  He began dry heaving and then went limp... All it took was one look between my husband and me - We both knew what the other was thinking.  We ran to the door, put him in the car, and drove to the ER.  We made the 25 minute drive in 9 minutes flat.  His pulse rate was over 240 bpm when he was finally evaluated at the ER.  What he experienced that night were the scariest moments I have ever lived through.  I knew that there was something seriously wrong... I knew that this was something different than I had ever seen anyone go through before and so did my husband.  I now know that Braxton was experiencing shock and it was indeed caused by his reaction to rice cereal.  After several days of hospitalization, he was finally discharged.  While he was not diagnosed that week (we were told it was a "stomach bug" - but I will post much more on this later), this was our first exerience with an acute, life threatening FPIES reaction.  My baby boy went into shock for the first time when he was 6 weeks old.  I have been fighting since that day to find answers and to prevent it from ever happening again. The link below is to a video that shows a child who is older than Braxton with a less severe FPIES reaction to rice.  I will NOT watch it again because it brings back too many memories and makes me ache for the child in the video.  I post it here so that others can become educated on what can happen to my little guy (and any FPIES child) when given one crumb of a trigger food:

Video of Jack's FPIES Reaction