Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Sunday, August 8, 2010
Mom Driven Diagnosis
Mom driven diagnosis is where I began to realize that yes, the mom's that are "in the trenches" ARE what is driving the recognition and continued research on this FPIES beast. And that I really did know what was best for my child...and that what I was learning from the other moms was more specific than the doctors that didn't know about FPIES. Diagnosis and treatment has come such a long way in just 5yrs, and I feel SOOOO fortunate for the moms that have been before me that have shared their story's, thus helping our situation....my hope would be the same for the mom's that follow us. Because even though I shudder that other little one's have to go through this- it is happening and so to have a place to go, a place of support and guidance is SO INVALUABLE!
The big hospitals that know FPIES well (Mt.Sinai and Children's Hospital of Philadelphia) have teams of knowledgable doctors. But not all of us live in or near NY or PA. There are plenty of other Allergists throughout the country that have become familiar with FPIES as well. Allergists are at the fore-front of diagnosis and treatment but a GI doctor, a Dietitian and a Pediatrician are all part of the team. These "big" hospitals that treat FPIES utilize this team approach. It has been my goal to duplicate that for my son, here at our hospital.
I value the assistance from the doctors, specialists and dietitians to help me keep my little man healthy. The doctors that have experience in FPIES have a wealth of information and assistance; and the ones that don't can catch up very quickly- they already have their knowledge in kids, allergys, GI disorders.
The two things that a doctor has to do to help a child with FPIES: 1. acknowledge the diagnosis and 2. listen to the parents.
Our Allergist at CHOP is incredibly knowledgable - because he has helped hundrends of kids with FPIES and thousands of other allergic disorders. I will never regret making the trip half way across the country to go to CHOP to meet with the expert allergists for the FPIES diagnosis. After much review of all the literature we could get a hold of, our pediatrician agreed that little man has FPIES, but we wanted to know from a specialist that has diagnosed and treated it before -- for nothing else but little man's health. We needed to know what the best treatment plan is. We were given a good treatment plan, and our Allergist remains a strong support for us as we continue to navigate through these murkey waters.
The other step that has been invaluable was my request for a consult to a dietitian (here and at CHOP -- it was not suggested, I requested it). FPIES is all about food, dietitian's are a great support and advocate for the little one's
I truly believe that the parents are a huge and vitally important member of the team, also the lead member in treating these little kiddo's. Our Allergist has given us good advice on how he best is able to treat such a clinical diagnosis in a medical community that operates on objectives...."listen to the parents"..."if the parents say there is something wrong..."..."there are no labs or tests to test for FPIES, if I feel a lab is needed, I know I need to talk to the parents again". We respect this because we know our son. We have had to follow his development, his tolerances and intolerances, his "normal", his sick days for every second of his life.
We. Know. Our. Son.
Navigating the specialists, and playing Dr.Mom in search of a diagnosis makes one want to put all the medical field behind us and just do it alone. It is a very frustrating diagnosis in this way. For me, I could go it alone -- back when things were rough with the medical community trying to convince them of what was happening with our son, my husband urged with me for us to go it alone -- because he completly trusts my ability to do so. There is a drive to do so -- he is our son afterall, I should be able to care for him- I DO know what is best for him...only, with FPIES, it is like being a first time mom with a newborn baby and you look to check on that thing they are doing is normal only to find out that one around you knows anything about newborn babies. So, even if I could possibly understand all of FPIES (which I never will), and even if the doctors aren't familiar with treating FPIES, there are co-factoring/co-compounding issues that arise and I feel it is helpful for the doctors to have a good baseline of where my son's normal is and what steps we have taken. But we are absolutly leaders on his medical team.
Bottom line- mommy knows best. Trust your instincts.
Are you reading this because you suspect your little one might have FPIES? Like I said, the support groups of mom of FPIES kids has been great. FPIES is a little known diagnosis. The moms are raising awareness but there are still way too many doctors that are not familiar with it. So, if you're looking for a place to start with journal articles to read and bring to your pediatrician. I have started a list. I am linking it here- please note it is a work in progress.