Patch On, Patch Off

We're home! Thanks to everyone who prayed for and with us during our trip.

Though we didn't return home with many solutions or cures, we were very encouraged with the confirmation that we received through the doctors and testing. The specialist confirmed that Kip has Food Protein Induced Enterocolitis Syndrome (FPIES). His immune system thinks certain food proteins are foreign invaders and attacks them which results in damage to his GI system. The good news is that the damage can be prevented through diet modification and that he should outgrow most or all of the food sensitivities by the time he starts kindergarten.

Since this particular type of food sensitivity doesn't test "positive" with traditional blood or skin allergy testing, we went to Houston for delayed food allergy "patch testing." Kip was tested for reactions to milk, soy, chicken, beef, corn, wheat, egg, potato, sweet potato, and bananas. We would have tested more foods but we ran out of space on Kip's back. According to Dr. Mom he reacts to all of those except the potatoes. I was pretty sure sweet potatoes were fine and we had not yet tried white potatoes, but I thought they were a pretty safe bet since Kip tends to do well with vegetables.

The results were "amazing!" At least that is what the nurses said as they gathered around to "ohh" and "ahh" over his test results. The doctor took pictures and asked if Kip's results could be included in her presentation at an upcoming allergy conference. She had "never seen that before." As nice as it is to have people amazed by your child, it seems best for that to happen outside of the doctor's office.

We were not surprised that his results were impressive based on his reaction to the 48 hours of testing. Twelve hours after testing began he started getting the hiccups repeatedly and then 28 hours after testing began he woke screaming and stopped sleeping for any reasonable duration. If you like Thomas the Tank Engine marathons, you should join us next time.

Kip tested positive - or sensitive - to everything except sweet potato and white potatoes. After we discussed the results, we met with a nutritionist to talk about how we can ensure Kip gets the fats and proteins that he needs to grow properly. Since Kip is still breastfeeding (which according to the nutritionist provides most of his fat and protein), he and I will both continue to avoid the offending foods for another year, try a few new foods in the coming weeks, and return to Houston to retest next summer. We'll also have Kip's growth monitored quarterly and have the results sent down to Houston. He is currently underweight. We'll make an annual "vacation" to Houston until his food sensitives are resolved. Good thing we had some fun while there!

Between our appointments and vain attempts at catching up on sleep, we visited Hermann Park each morning and afternoon. It amazes me that we spent two days doing different activities in the same park. We walked around, played on the playgrounds, went to the zoo, and went on a train ride. Brian and Josh also played at the Houston Children's Museum. Another aspect to the whole adventure was staying in a small one bedroom hotel room - myself, G-daddy, the boys, and for the later half of the stay, Brian. We ate "in" at every meal and borrowed at least half a dozen videos from the hotel's lending library. On our way home yesterday, we agreed that we wanted to visit the museum, zoo, park, and train again next year - and maybe even ride the paddle boats. However, we'll probably look for slightly larger accommodations, especially considering Kip's potential reaction to the testing. Still, it was one of those experiences that we'll look back on, laugh about, and know that we're all closer because of our time together.

The visit provided an important mental shift for me as well. All along, I've been viewing the "Kip diet" as a temporary thing. Now, knowing that he could have these restrictions for several more years, I'm motivated to incorporate the "Kip diet" into our entire family's meals. We need to eat together again. I need to cook 3 meals a day instead of 9. So, I'm now working on compiling Kip friendly recipes so that we can at least share one dish at meals together. Ideally, we'll get to where we can share entire meals.

It's really good to be home.


The Wilcoxson's said...

it is never good when a doctor asks if he can use the test results for a presentation, because that means that no will understand except other doctors. We will continue to pray for Kip and you while you go through this.

cheryl said...

Continuing to pray for y'all! So thankful that you were at least affirmed in your efforts! You're a great momma...hang in there!