My son, Braxton, is 5 months old. He is one of the happiest babies I have ever met. He loves to laugh and play. He has a chronic condition called Food Protein Enterocolitis Syndrome (FPIES). FPIES has ruled our lives since shortly after Braxton was born. Vomit, scary diapers that look like they were produced by an alien, and sleepless nights have become a way of life for our family. The hardest part of Braxton's condition is the lack of support we have received from many within the medical community. To date, I have fought for every bit of medical care my son has received. That fight, along with the support I have received from other mothers who are involved in online communities who share their own stories in blogs, are the reasons I have created this blog.
Although Braxton is only 5 months old, a LOT has happened in those 5 months. If I tried to put it all in one post, it would be a short novel. For this reason, I will do posts designed to catch-up what we have gone through so far over the next few weeks. For now, I will give you enough of a summary to let you know where Braxton is in his FPIES fight to-date:
Braxton cannot tolerate any milk or soy formula (even the expensive hypo-allergenic kind that you can buy at the store). Instead, he has to be on a very expensive kind of formula (not covered by insurance, but that is another post in and of itself) called elemental formula. Braxton has not tolerated any elemental formula well. He thrived on Neocate for about 6 weeks before he developed chronic diarrhea and vomiting. Our medical team decided to switch him to Elecare. After two weeks on Elecare, he developed severe vomiting and diarrhea, and had large amounts of blood in his stool. He is now on Nutramigen AA. He has held-up alright on Nutramigen AA, but still vomits (large quantities) every single day. We know he does not fully tolerate this formula, but there are no other alternatives available for us to feed him. He is not gaining in weight or height as he should (around 5th percentile in both). No one on our medical team has offered any solution to-date.
We are currently counting down the days until an emergency appointment (actually set yesterday) with a speciailist at the Pediatric Center for Rare and Complex Disease in New Jersey. Although it is a great expense, my family will be traveling to NJ from SC within the next two weeks. We are hoping to find some answers there...
This is where our family is to-date. I sincerely hope that this blog can provide information to other families who may be seeking it. I also hope that it can serve as another vehicle to break the feeling of isolation FPIES can create for families experiencing the same fight. Finally, I hope this blog will assist in raising awareness of this disorder. Many of us desparately need the medical community to support us, but find that there is no support locally available. Only through increased awareness and research, will we ever be able to help the children who fight this battle daily.
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