We got out of the hospital Tuesday, and went home thinking that we'd switch to a soy formula and be back to normal. She got the same amount of soy formula - about 6-8 ounces total a day, mixed with breast milk, on the days I was working. Exactly two weeks after starting that she was at grandma's (her usual daycare for now) and began vomiting again. It turned into the same type of episode; extreme vomiting, and became pale, lethargic and cold within minutes. We took her to the ER again. This was a different hospital, because we work and do daycare in a different city than where we live. They were not nearly as quick to get her in, and made us wait for quite a while. I went up to the desk twice after checking in, trying to explain that my baby was pale and cold, but the front desk staff were not interested in knowing what was going on with her and just let me know that a nurse would be out to get all of the information. INFURIATING. I realize that everyone is there because of an emergency, but if they don't know the situation at check in, then how do they know to send a nurse to the pale and lethargic baby before the guy with a broken toe?
Eventually they took her and got IV fluids started, because she was very dehydrated. After many tests, they thought that she had Intussusception (a condition where the intestines telescope into each other). This was apparently very serious and would require a procedure to correct it, so they sent us to the same Children's Hospital, again by ambulance. At that hospital they determined it was not Intussusception, but were stumped for a while. After being there a couple days, the doctors had a conference call to get more opinions, and came up with a diagnosis of Food Protein Induced Enterocolitis Syndrome. The main doctor, who we'll call Dr. Amazing, admitted she didn't know a lot about it, but felt the diagnosis fit. She referred us on to see an allergist of our choosing, and let us go home. We left feeling some relief, thinking that avoiding dairy and soy would not be that big of a problem, just maybe time consuming in meal planning for her as she starts solids.
We were wrong about that. It's more than time consuming. As we read everything we could find, it was not comforting to see the long list of other trigger foods - rice, oats, barley, squash, green beans, peas, sweet potatoes, chicken, and turkey, among others. It was far from comforting to see that on most FPIES webpages there were parts about "What to bring to the ER" and "Getting a letter from your doctor for ER visits" and "What to do when your child goes into shock". Apparently emergency room visits will become more common in our future. How frightening.
I had just started feeling totally comfortable as a mom, just gotten over the society induced guilt of supplementing with formula, just read all the books and blogs I could about starting solids and making it fun, just got a pretty good schedule, just figured out how to turn my favorite music into lullabies. And BAM, life gave us the twist. You know, like on all the reality TV shows. The designers on Project Runway feel great about their piece, and in comes Tim Gunn, saying they need to make 10 more garments by the time of the runway. I feel like Tim Gunn just came in and gave us our twist, upped by a thousand.
Eventually they took her and got IV fluids started, because she was very dehydrated. After many tests, they thought that she had Intussusception (a condition where the intestines telescope into each other). This was apparently very serious and would require a procedure to correct it, so they sent us to the same Children's Hospital, again by ambulance. At that hospital they determined it was not Intussusception, but were stumped for a while. After being there a couple days, the doctors had a conference call to get more opinions, and came up with a diagnosis of Food Protein Induced Enterocolitis Syndrome. The main doctor, who we'll call Dr. Amazing, admitted she didn't know a lot about it, but felt the diagnosis fit. She referred us on to see an allergist of our choosing, and let us go home. We left feeling some relief, thinking that avoiding dairy and soy would not be that big of a problem, just maybe time consuming in meal planning for her as she starts solids.
We were wrong about that. It's more than time consuming. As we read everything we could find, it was not comforting to see the long list of other trigger foods - rice, oats, barley, squash, green beans, peas, sweet potatoes, chicken, and turkey, among others. It was far from comforting to see that on most FPIES webpages there were parts about "What to bring to the ER" and "Getting a letter from your doctor for ER visits" and "What to do when your child goes into shock". Apparently emergency room visits will become more common in our future. How frightening.
I had just started feeling totally comfortable as a mom, just gotten over the society induced guilt of supplementing with formula, just read all the books and blogs I could about starting solids and making it fun, just got a pretty good schedule, just figured out how to turn my favorite music into lullabies. And BAM, life gave us the twist. You know, like on all the reality TV shows. The designers on Project Runway feel great about their piece, and in comes Tim Gunn, saying they need to make 10 more garments by the time of the runway. I feel like Tim Gunn just came in and gave us our twist, upped by a thousand.