Shortly after Braxton nursed for the first time he begain spitting up. He spit up so much that we called the nurse in three times because we were afraid he was going to choke and stop breathing. We were told that he simply swallowed too much amniotic fluid. We accepted the response and went home with our brand new baby who still spit up so much that he couldn't sleep for choking on it. Those first few weeks were really hard. Braxton dropped a LOT of weight pretty quickly. He lost over 14% of his body weight in the first two weeks after I had him. I was told to begin supplementing immediately. Although all the signs were there that I would develop an adequate suply of breastmilk, the more I pumped and nursed, the less milk I produced. I saw a lactation consultant two to three times per week. She was baffled by it. He NEVER slept. When I say never, I literally mean that my baby never slept more than 15-20 minutes at a time. He would wake up screaming! He spit up constantly. He began clawing his face until it would bleed and deveoped a rash on his face. Over time, he developed a chronic cough. He also had what sounded like sinus congestion and began snoring while he slept.
During this period of time, I took him to the doctor constantly (not much has changed in that regard). We were told he simply had slight reflux, then we were told that he had severe reflux and would require two medications simultaneouly to treat it. We were told he had infant acne to explain his rash. Then, we were told he had developed cradle cap on his face as the rash got worse. We were also told by a brilliant Nurse Practioner that we were causing him to cry and not sleep, and that I as a mother simply needed to "learn to let my baby cry." In spite of these explanations, my intiuition told me that something else was going on - I simply didn't know what it was...
One evening I opened B's diaper and it had a large amount of blood in it. My initial thought was to take him to the hospital, but I pulled my copy of What to Expect in the First Year down and looked up what could cause blood in the stool. The description under milk allergy described pretty closely what had been happening to Braxton. I phoned my husband, explained what happened, and asked him to bring home soy formula. When we stopped using milk formula, Braxton's symptoms rapidly began to resolve. Unfortunately, by day 8 on soy, many of them were back. On day 14, we knew soy was no longer an option and switched to Alimentum (a hydrolyzed formula). His reaction to Alimentum was immediate and violent. He had projectile vomiting within two minutes of finishing the bottle. He would not take a second bottle. We switched him to elemental formula (Neocate). Since that time, he has failed Neocate and Elecare and he is now on Nutramigen AA (more detail will be given on our elemental formula fails in another post, as this is an important part of the story). He has been skin-prick tested to see if he is "allergic" to milk, soy, rice or corn. All skin-prick tests were negative for allergy. Children with FPIES typically have negative skin-prick tests.
If I had a dollar for every time we have been asked, "Why don't you just give that baby goat's milk?!" my family would be rich! I know that this question is well-intentioned, but at some point it begins to feed into the sense of isolation that a family with an FPIES child often feels. I have often wanted to reply with, "Do you really think we would be feeding him a formula that costs $57 for a can that lasts for two days and isn't covered by our insurance if we could just give him goat's milk?" I have of course never said this to anyone, as I know that I hear responses like this for several different reasons. Most people have never heard of FPIES and have no clue what it is. It is hard to stomach that a baby would be born that can't eat anything - I get that. It is harder to be the mother of a baby that can't eat anything... It is also difficult to believe that a baby who is contstantly smiling and looks alright on the outside could be so sick. What makes this question the hardest to handle is when someone who is a close friend or family member asks it. It isn't that it makes me mad at that person, it's just that I wish they would be supportive by educating themselves on what we are going through and how to help Braxton (or at least prevent him from becoming sicker). If you know someone with an FPIES child, one of the best ways you can provide them with support is to educate yourself and others on what FPIES is. There are plenty of articles that are easily accessible on the subject thanks to the internet - some of these resources are provided at the bottom of this blog. To answer this question once and for all - NO, BRAXTON CANNOT JUST HAVE GOAT'S MILK!
Great post Ashley! I think it also covers why he can't have breast milk. I was fortunate that for the most part Olivia tolerated my breast milk but as I am learning that was not the case for many of us. Such a complicated disease this FPIES is!
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