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."
Thursday, September 30, 2010
2 Allergists, 2 GI, 2 Dietitians, A Pediatrician, 2 parents and an FPIES diagnosis....
On Wednesday, we took Little Man to see a 2nd allergist. We love our first allergist but he is a few states away so we are looking for more local support and resources for our team here for Little Man's continued care of this chronic illness.
The drive was an hour and a half and we went as a family. Little man's brothers are getting used to doctor appointments being part of the normal.
This allergist was friendly and after reviewing his history, confirms that Little Man clearly has classic FPIES to some foods and not-so-typical reactions to others (tapioca). He speculated this is likely from the chronic inflammation and once this is healed, food introductions/tolerance should become more “FPIES normal”. He has not had patients that have no safe foods/no diet.
No foods are safe, all food can be a trigger- it is all about the trials. Avoid the common triggers for now, start with fruits and veggies and grains. He suggested wheat, quinoa, carrots, spinach. Meats may be more difficult to digest right now, agreed lamb may be good, also suggested pork. Emphasized these are only suggestions- it is really up to us what we would like to do. Agrees with Dr.P at CHOP that goal should be a tiny menu and hold for awhile with Sam being that he has multiple triggers.
Recommends small incremental doses (1oz/1tsp/day and building)- monitoring for signs of symptoms of intolerance. He does not see need for hospital trials for all food trials (we’d be in the hospital all the time) but emphasized/stressed to have a plan and head to the ER at the very first signs of reaction. Acknowledges that we clearly can recognize early signs and to not wait for the vomiting with Sam because he is too fragile with the anemia.
Reminded that he already has a diagnosis, and now a 2nd Allergist has confirmed it. Carry an ER letter and information on FPIES (provided 2 journal articles- that I already have, please can someone give me one I don't yet have?) and tell new doctors not familiar with Sam and FPIES that “This is his diagnosis, it is called FPIES. He has received this diagnosis from an Allergist; here is some information about it”. They don't need to diagnosis him, they need only to learn about his diagnosis to help him. He spelled out what I have been trying to do since his diagnosis.
He will send letters of FPIES explanation and ER letters to our "team" here doctors here and a copy to us to carry with at all times.
It was a beneficial visit and we will wait to see if it becomes fruitful. My hope is having a MD with familiarity with FPIES that our team here can/will work with will help everyone to learn....to help Little Man and to help the next little one's that come behind him with this illness.
All of this only reminds us that "Little Man isn't under the doctors care- he is under our care; doctors are there for advisement on his medical needs." (direct quote from Little man's daddy). We coordinate his care, we research his diagnosis, we monitor his baseline and labs and weights and compounding diagnosis', we decide what foods to trial and when. This allergist helped us to see that once again.
We went to Whole foods right after the appt. We picked up raspberries, blueberries and baby cucumbers. This morning, we tried raspberries - he would not even touch them, so I moved on to the blueberries. He played with them but wouldn't let one touch his lips. So, I got brave (thanks to the allergist) and cooked him some hemp milk/millet porridge- he LOVED it!! Lets hope it loves him....the only thing we can do is wait and see...so stay tuned (and pray)!!