I promised several posts ago that I would do a post on Braxton's Elemental Formula fails, as this has been such a big part of our journey. For those of you who are not familiar with elemental formulas, I will give a brief summary of what elemental formula is. When a baby can't tolerate regular milk-based formulas, normally the baby is switched to a soy-based formula. 1 in 5 children who cannot tolerate milk-based formulas cannot tolerate soy formula either. These children are usually switched to what is called hydrolyzed formula. Hydrolyzed formulas contain very broken-down milk proteins that most of the children who can't tolerate milk can handle (it is very close to breastmilk in how broken-down it is). It is available at most stores, but is much more expensive than regular soy or milk-based formulas. A very small percentage of children can't even tolerate the broken-down protein found in hydrolyzed formula (Braxton is one of these children... not surprising considering FPIES children can react to even a trace amount of protein from a trigger food). For these children, the last alternative is a prescription amino-acid based formula (AKA: elemental formula). Since our bodies are made of amino-acids, it is impossible for a child to be allergic to amino-acid proteins (it is not impossible, however, for a child to react to other ingredients found within this formula). These formulas are NOT available in stores. They must be special-ordered. They cost anywhere from $40-$57 for a can that lasts a 6-month old approximately two days. Because our family is blessed enough to be considered middle-class and both my husband and I work for the private-sector, our insurance does not pay any part of the expense associated with this formula ((The insurance plan for federal employees covers the cost of these formulas. Medicaid covers the cost of these formulas (we do not qualify). WIC covers the cost of these formulas (we do not qualify). In the state of SC, all state workers also receive benefits which will cover the cost of this formula. In our state, only families who do not have anyone employed by the state or federal government who are above the poverty line have to absorb the tremendous expense associated with elemental formulas).
Braxton has been prescribed 3 different amino-acid based elemental formulas. The first amino-acid based formula he was on is called Neocate. Braxton thrived on Neocate for about 6 weeks. I actually made the comment that it was like someone gave me a brand-new baby: A baby who didn't constantly cry and vomit. A baby who slept through the night instead of waking up every 2-3 hours screaming. Gradually, Braxton seemed to become more and more intolerant to Neocate. The last week he was taking Neocate, he was up to about 15 dirty diapers a day and he vomited 7-8 times per day. We were instructed by Braxton's doctor to switch him to Elecare. Braxton stopped tolerating Elecare within one week of starting the trial. He began vomiting even more than he had on Neocate and had approximately 20 dirty diapers a day. He was taken off of Elecare after his dirty diaper was filled with blood. He developed carbohydrate malabsorption (where the body does not absorb carbohydrates as it should - it can result in the child becoming malnourished) and severe intestinal inflammation. Now, Braxton is on Nutramigen AA. He has done okay on this formula, but he has continued to vomit often and has developed constipation.
When a child cannot tolerate breast milk, milk-based formula, soy-based formula, hydrolyzed formula, and seems to fail every elemental formula that is introduced, there are no other alternatives available to sustain the child (other than one strategy adopted by a very resourceful dietician we know who manufacturers her child's formula at home - this is very difficult, however, particularly for those of us who are not dieticians). This is where we believed our family was... We were absolutely terrified and could not find anyone who could provide us with help. This is why we made the decision to travel to the Pedicatric Center for Rare and Complex Disease in Newark, NJ to see Dr. Jyonouchi. She informed us that Braxton does not actually seem to be intolerant to elemental formula. She instead believes that he does not seem to tolerate these formulas because his system was damaged so severely by his rice reaction (and then by the antibiotics he was treated with in error - he received 3 rounds intravenously), that his system can no longer regulate itself. This theory would explain why he initially did so well on Neocate for about 6 weeks and then stopped tolerating it after his rice reaction. We are going to treat this problem with probiotics to help his system regain balance, and we were instructed to give him anything except prescription elemental formula for the forseeable future. While my heart breaks when I see cute little baby spoons, sippy cups, and plates that I know he will not get to use for the foreseeable future, I am so happy that there is SOMETHING available that Braxton will be able to eat. I am so grateful to Dr. J for not accepting things at face-value and finding a way to treat the problem - instead of just ignoring it.
Braxton has been prescribed 3 different amino-acid based elemental formulas. The first amino-acid based formula he was on is called Neocate. Braxton thrived on Neocate for about 6 weeks. I actually made the comment that it was like someone gave me a brand-new baby: A baby who didn't constantly cry and vomit. A baby who slept through the night instead of waking up every 2-3 hours screaming. Gradually, Braxton seemed to become more and more intolerant to Neocate. The last week he was taking Neocate, he was up to about 15 dirty diapers a day and he vomited 7-8 times per day. We were instructed by Braxton's doctor to switch him to Elecare. Braxton stopped tolerating Elecare within one week of starting the trial. He began vomiting even more than he had on Neocate and had approximately 20 dirty diapers a day. He was taken off of Elecare after his dirty diaper was filled with blood. He developed carbohydrate malabsorption (where the body does not absorb carbohydrates as it should - it can result in the child becoming malnourished) and severe intestinal inflammation. Now, Braxton is on Nutramigen AA. He has done okay on this formula, but he has continued to vomit often and has developed constipation.
When a child cannot tolerate breast milk, milk-based formula, soy-based formula, hydrolyzed formula, and seems to fail every elemental formula that is introduced, there are no other alternatives available to sustain the child (other than one strategy adopted by a very resourceful dietician we know who manufacturers her child's formula at home - this is very difficult, however, particularly for those of us who are not dieticians). This is where we believed our family was... We were absolutely terrified and could not find anyone who could provide us with help. This is why we made the decision to travel to the Pedicatric Center for Rare and Complex Disease in Newark, NJ to see Dr. Jyonouchi. She informed us that Braxton does not actually seem to be intolerant to elemental formula. She instead believes that he does not seem to tolerate these formulas because his system was damaged so severely by his rice reaction (and then by the antibiotics he was treated with in error - he received 3 rounds intravenously), that his system can no longer regulate itself. This theory would explain why he initially did so well on Neocate for about 6 weeks and then stopped tolerating it after his rice reaction. We are going to treat this problem with probiotics to help his system regain balance, and we were instructed to give him anything except prescription elemental formula for the forseeable future. While my heart breaks when I see cute little baby spoons, sippy cups, and plates that I know he will not get to use for the foreseeable future, I am so happy that there is SOMETHING available that Braxton will be able to eat. I am so grateful to Dr. J for not accepting things at face-value and finding a way to treat the problem - instead of just ignoring it.
Wow... I could have written this post. We live in Ga. Luckily our GI has finally seen it was the grains he was on (before it was thought to be his reflux causing all these issues). We started an Elecare only diet on march 9th and things are getting SO much better. I hope things are starting to get better for your LO.
ReplyDeleteSo what is your baby eating? My baby has the exact problem just add eczema to make it worst. She is not tolerating baby food (carrots, green beans potatoes, oatmeal cereal and rice cereal) so shes still is on puramino and she is 6 months 1 week :(... thank you
ReplyDeleteMy son sounds a lot like what you went through with Braxton. I know your FPIES journey is probably over by now (I see this was posted in 2011) but I'm still in the throes of mine (my son is 5 months old and can't even tolerate Neocate, we're attempting PurAmino tomorrow and I'm praying hard it'll work because we're quickly running out of options) and I'd love to hear how you finally resolved Braxton's issues!
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