Thinking 'corny' thoughts...

So, we did it. We re-trialed corn....and PASSED!!  I can't believe it, this is so awesome!  We used kix cereal again and I wish everyone could have seen her face when we gave the single kix to her on the first day of the trial.  She smiled, she giggled and she just looked at me like life was great! Until she figured out I wouldn't give her more.  Then her mood changed, haha!

I stopped at Trader Joe's last week and found corn tortillas (corn flour, water, lime), which I think will work great. I'm excited to make her PB&J sandwich (sunflower seed butter and strawberries). I have a feeling she will love it! I also want to try corn chex and polenta and see what I can do with those!  If anyone has more ideas on what we can try with this new pass, let me know!!!! 

Last week, my mom and I took Brynn to an Integrated Health Clinic to see a doctor. My mom has Crohn's disease and this doctor has helped her, so we thought we would see what her thoughts were on FPIES.  Overall, it was a great appointment.  The first thing that caught my attention, was a test called the ALCAT test.  This test differs from other food allergy or sensitivity tests as it accurately and objectively measures leukocyte cellular reactivity which is the final common pathway of all inflammatory triggers.  The test is a simple finger prick blood draw and tests 20 foods:  apple, barley, beef, broccoli, cane sugar, carrot, corn, cow's milk, garlic, gluten, lemon, orange, peanut, pork, rice, soybean, sweet potato, tomato, tuna, and turkey. 

Something else I just thought about was a test I had done on myself a few years ago.  I chiropractor was just opening and had advertised one free session, so I decided what the heck and made an appt. While I was there, they did a test called the ZYTO--I put my hand on this machine and had to keep it there for 3-5 mins or something like that.  On the sheet I got, it says that this info is not an indicator of food allergies or food sensitivities. It is simply data showing your body's degree of response to computer signatures that have been linked to the foods indicated.  Anyway, the top 5 foods that it says that I may choose to avoid are RICE (Brynn's biggest trigger), american cheese, ciggarette smoke, millet and pecans.  Very interesting.

Could either of these tests be possible predictors of FPIES triggers?  I'm thinking about cutting out the top 5 foods on my list and then re-introducing them to see if it makes a difference for me.  We are debating on doing the ALCAT with Brynn.  This doctor doesn't take insurance so nothing would be covered. She was an amazing dr though... we just had the consult and she was very interested in FPIES and right off the bat said "Ok, we need to figure out what is causing all of this and what we are going to do to fix it".  She thinks B probably has an overgrowth of yeast in her body, which is what we were thinking as well.  But it's not like we have a pediatritian that I can call and say "hey, this is what I think is going on with Brynn, can we try an antifungal med to see if it helps?"  The doc we currently have would look at me like I was nuts, lol.  The integrated health dr wants us to come back for a more in-depth history or Brynn's life as well as my pregnancy, she wants us to do a yeast in children questionairre, and she wants us to talk to the nutritionist she works closely with to help figure out what is going on. We have never had a dr that REALLY wanted to help us.  It just sucks that NOTHING we do with this dr will be covered....it's going to get spendy.  We need to figure out what we are going to do. 

The last couple days we have been trialling cucumbers.  She doesn't seem to be a fan of them, she just picks around them.  Oh well, we will try them a few more times--just enough to call them a pass.   Hmm what to trial next??  =)

Long overdue update!

I know, I know, it's been way too long! With summer weather....well, I don't know what exactly to call it when it's literally over 100 degrees one day and then the next barely 70, but....life has been very hectic! We try to get outside as much as possible, so I feel like I barely have time to do anything else!

I'm pretty bummed this morning. I'm not sure what is going on with Brynn.  Last week one day, daycare called me and said she had a HORRIBLE, raw butt.  Since it was such a nice day, she just let her run around outside with no diaper on and just a onsie (unbuttoned) to air out.  We hadn't done any food trials that week, so I have no clue what caused it.  I decided maybe we should pull all her safe fruit for a few days to see if that helps, and it did.  So Monday we started to add her safe fruits back into her diet, but only giving her small amounts of them and only a couple times a day. It's really hard to NOT give her fruit, because it's pretty much all that is safe for her other than pototoes and oatmeal.  Monday night she was up quite a bit at night and was crabby/clingy at daycare so I was thinking maybe she had an ear infection. Brought her in and her ears were just fine.  So last night, about 11pm, she woke up and I changed her diaper. It was awful.  Gave her a bottle and put her back to bed. She was then up from about 2-4am screaming.  What the heck is going on??  She had sweet potato, a bunch of blueberries and a strawberry for supper...was it one of the fruits? I thought they were both safe? (Sweet potato is for sure safe)  Now daycare just texted me that she had another terrible diaper and her butt is raw as can be.  =(  Blueberries?  I told her not to give her any blueberries today to see if that helped. I don't know what else to do.....

Another battle I've been struggling with is her probiotic.  After we got back form our New Jersey appt, we started both the EleCare and the probiotic at about the same time.  Since then, she has been doing A-mazing with food trials, only failing eggs and having a couple other little mishaps with crumbs and cross contamination.  Her current does of probiotic is so small--she only gets 2 tiny pinches every morning.  So, is that minute amount of the probiotic REALLY helping her? Or does she not need it anymore because the EleCare actually made the difference and healed her chronic inflammation?  I just don't know the answers and I hate knowing that I don't have a professional to turn to for advice.  This is all on Danny and I.  We are supposed to figure this out on our own.  I'm not a doctor, how I am supposed to know all of this?? Ask me about autism or behavior analysis and I can help, but all of this GI stuff?  I have no clue. 

Do I pull all of her fruit (except pears since those are a long-time pass) and re-introduce them? That may be the answer.  Should we work on increasing her probiotic and put all food trials on the back-burner? Maybe.  I want so badly for her to be able to eat more foods, so I hate to stop food trials. I want to find her foods other than fruit that she can tolerate so we don't end up giving her so many servings of fruit every day.  Could something else be going on that has nothing to do with her probiotic OR fruit? Good chance....like I said, I'm not a doctor though. Sure would be nice to have a pediatrician on board with FPIES so I'd have someone to call. 

When things like this are going on, it is so incredibly hard for me to focus on anything else. I have to remind myself that I still need to get my job done, I still need to clean my house, I still need to take care of my kids in other ways besides watching what goes into their bodies.  And I need to take care of myself. I just need to take it day by day, step by step and have faith that I will be able to figure this all out. And I pray every day that FPIES is coming to an end, not just for Brynn, but for all the little ones that suffer because of it....please.....