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."
Friday, September 10, 2010
FPIES = Feeling Powerless In Every Sense.....
How can you feel empowered in any sense when everything normal you know is ripped out from underneath you from something as simple as feeding your baby the simplest things: rice, oats, formula, soy (in everything!), corn (again, in everything!), the list grows and grows and all triggers are unknown -- until you feed them to your child.
FPIES reactions vary in severity, just as a typical food allergy can vary in severity. In a typical food allergy (that most are more familiar with) - one child allergic to peanuts has to avoid foods that contain peanuts because it causes hives, or some mouth itching; another child goes into anaphylatic shock from any exposure of peanut residue. FPIES allergy is the same. One child can go into vomiting/diarrhea/hypotensive induced shock hours after minimal ingestion, and another will cascade down a myriad of symptoms for days before the body gives a full rejection (violent vomiting and shock symptoms) of the offending protein. With FPIES, there is yet to be a way of knowing what foods will cause this reaction. You have to feed your child food that may end up being poison in their bodies. You have to make your child sick to find food for them to eat and sustain on. How does such an awful thing even exist? The underlying stress this puts on a parents shoulders should never be underestimated. The roller coaster ride of emotions can be quite overwhelming. And yet, most of us are walking around without adequate support when we need it most....when our little one's are sick.
FPIES triggers are everywhere. Kids put everything in their mouths, so not even bath soap is safe. Paper has soy and corn. Crayons, paints and crafts have wheat, soy, corn. Baby food is contaminated with dairy, soy, rice. Medications have soy, dairy, corn, additives, colors, in them. Your child is in pain and you can't even give him a medication to take away that pain, you can't do anything to help with the pain but wait for it to pass. Your only consolation? They are too little to even understand, they are also too little to know the difference. What kind of a consolation is that? Think of when you had a stomach flu, or a hangover, or food poisoning, or if you know anyone who has Crohn's Disease or Ulcerative Colitis- ask them how much pain they go through. I imagine these things are close to how it must feel for an FPIES child. But, what can a parent do about it?
What do you do when your child is sick and their symptoms puzzle you or you don't know how to make them better? You take them to the doctor. What do you do when your FPIES child is sick and the doctors don't understand it? You are forced to deal with it on your own. Looking for support from the medical community that knows very little about this rare illness and not finding it, only makes the load heavier. You carry this load every day; some days it is heavier than others (days of reacting, days recovering from reactions, ER visits, doctors offices where you are not heard); but you keep on carrying the heavy-heavy load. I accept my load, he is my child. I am not asking for anyone to take away his FPIES.....just asking for a little bit of support.
We, the FPIES moms in the trenches can continue to make a difference. Continue to work on being heard and raising awareness. if not for our children- for the children following us.
More research is needed, better protocols for how to even begin to help these family's. Help doesn't come in the way of a "cure", many FPIES kids outgrow this by the time they are 4-5yrs old, we are fortunate enough that our children have a diagnosis that has (in the words of another FPIES mommy)"a light at the end of the tunnel, it's just a really long tunnel!". We know (we hold on the hope) our children will not have this forever and we know one day we can look back on it under a different light but that doesn't take away from how tough it is RIGHT now. Help comes in the form of symptom relief and support for the family behind the FPIES child.
Support is one of the biggest "treatements" of this beast diagnosis. And yet, so many of us struggle to find it. This is a chronic illness of a baby/a young child. Their needs are 100% on the parents, a simple "how are you doing" in the beginning of a appointment would go a million miles for me. A reassurance that even though my child doesn't have a test that can 'read' his symptoms- that someone believes and trusts me because they are listening and care about my child, that even though there is little know about this diagnosis- they are willing to learn; to learn so they can help the next time he is sick.
Support is needed, for the family of a child with a chronic illness, and to make sure the family is being HEARD. Coordinated care is essential. Coordinated care -between GI, Allergy, Nutrition, and Pediatrician. Also coordinated care between in-patient and out-patient doctors because we all know hospitalization happens for these kiddos.
Bottom line to how to empower a parent with a child with FPIES? A willingness to learn and to listen to the parents.