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."
Tuesday, August 23, 2011
Back to CHOP
We had exciting news on our first day! Little man started walking again! He had lost some muscle tone/strength in his legs with the scurvy, it also seemed to be painful for a few days; so now he is having to learn to trust his legs again. Yesterday, he stood from kneeling (he has been crawling) and today he just walked unassisted/alone across the RV! He knew what he was doing and was excited about it too! He
continues to get stronger. And is so far, is tolerating the vitamin C dietary supplement we are giving him. He is also happier and has been talking more/new words- so overall doing really well and handling this long trip well.
It was a long day of appointments, but they went well. Allergy appt was quick as he confirms we are on track with his FPIES symptoms and that he clearly has more going on - pushing other reactions....he speculates the Sucrase-Isomaltose deficiency and deferred to GI for more input. Some insights he gave- tapioca is too closely related to rice (proteins/growing/etc) so is likely why he built up an FPIES response to that. Feels the FPIES responses are at the root of his intolerance's- but complicated by other factors. Ends with saying he believes my gut is right and that it is little man's gut that is causing these continued inability to tolerate foods.
The GI appt was long, made the day very long (but good); she agrees he has clear/classic FPIES and other things going on- which could be a combination of 4 other things: FPIES, auto-immune, metabolic, and/or intolerance's related to his sucrose-isomaltose deficiency and has recommendations/thoughts on how to proceed with each. She also agrees hematology should take some deeper looks at him. We were able to get that scheduled before we left the east coast.
The plan is for the GI is going to speak with the Allergist and they will coordinate some plans/guidelines for introducing foods and then speak with our regular GI as well as provide support while doing the food trials.....because as we all know- all plans look good and make sense on paper but once we start and he has symptoms- getting lost in what those symptoms are telling us is where we are always getting stuck. We discussed a lot about the development of his specific guidelines, using the objective data that he gives us (labs, stool tests, endoscopy,etc) before trial (while on baseline diet), during trials and after. She agrees that his PICC line is an ideal time to do these- to provide nutritional or IV support if he starts to "fall". She doesn't want to see steroids used to introduce foods because she feels he would just fail the food if/once steroid is removed.
It is a lot to process and I begin to take notes and formulate a plan....