Breath-Holding Spells?

Weird title, huh?  Another mom asked me what some of the first clues were that Braxton had FPIES.  I quickly rattled off things that most of us know by heart (classic signs in the literature): vomiting, diarrhea, distrubed sleep, rash on face on occassion and then the blow-out rice reaction that landed us in the hospital.  It then occurred to me that I had left out a detail that was fairly important - at least in our story.  Not too many weeks after Braxton was born he started exhibiting a really scary symptom.  Sometimes, after we would fight him to take his bottle (we assumed this was due to what was diagnosed as severe reflux) he would belch very loudly, throw-up, and then become completely non-responsive for 2-3 minutes.  He was so out-of-it that I would try to revive him by picking him up and his head would flop from side to side.  Then, he would suddenly wake up and it was as if it never happened.  The first time it happened, I panicked, but once he snapped out of it I thought maybe I was just an ill-equipped, new, first-time mom who over-reacted.  The second time it happened, my mom was at my house and she exclaimed: "I am not trying to scare you, but I really think there is something major wrong here."  These episodes continued to happen to Braxton periodically.  I asked our pediatrician about it.  I explained that I noticed it always occurred within a thirty minutes after taking a bottle and went through his history of vomiting.  The official diagnosis: Breath-holding Spells due to the severe GERD (reflux) that had already been diagnosed.  Breath-holding spells occur in some children as a reaction to pain.  The child holds his/her breath until they pass out as a response to pain.  

Within two weeks of this diagnosis, Braxton had his shock reaction to rice.  We actually told them he was diagnosed with breath-holding spells at the ER that night, since he had experienced a period of being completely non-responsive before we made it to the emergency room.  Interstingly, he never passed out from having a catheter put in place, getting an IV, immunizations, or having his blood drawn.  After receiving the FPIES diagnosis a month later, I know that he doesn't have breath-holding spells.  While I have never heard another mom mention this symptom as part of a chronic reaction (reaction that occurs due to on-going exposure to a trigger-food on a daily basis; classic acute shock-type reactions typically occur when a trigger-food is re-introduced after a period of elimination), I am convinced that the FPIES immune response caused by milk/soy formula created this symptom.  He has never experienced this particular symptom again since going on a diet consisting strictly of elemental formula.  I list it here for several reasons: 1. It is important to know that sometimes physicians are wrong; 2. It is a part of our story, and 3. It may help a family who is experiencing something similar to be one-step closer to a diagnosis.

By the way, I thought the Breath-holding spells diagnosis was tough when he got it, but I would gladly take it over the FPIES!  I am grateful, however, that I am not as clueless as I once was and that he is not going through these episodes anymore.