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.....

Oats, eggs and watermelon!!

Don't worry, we didn't mix oats, eggs and watermelon together.  =)  We've really picked up the pace on food trials lately and the above items have been the latest ones! We officially have passed oats, which is simply amazing!  She can't get enough of her oatmeal! It's such a great feeling to have both kids eating the exact same thing for breakfast (and even dinner lately, lol). 

This past Friday evening, we decided last minute to trial eggs. I've been thinking about and wanting to trial eggs for awhile now, so we finally just did it.  She seemed to do fine with the few bites she had, slept ok (up a little more than normal, but not a ton).  Saturday morning, she had a dirty diaper and my mom changed her right away and she had an instant blistering rash all over her bottom.  It continued to worsen the rest of the day and then calmed down on Sunday.  Poor girl, it was so sensitive and sore, we decided it wasn't worth giving her anymore eggs for awhile.  But now I'm left with...did she actually have a reaction to eggs? Sulfites maybe?  Or was it because B's body can't handle corn and chickens eat corn?  (I know that whole chicken issue sounds strange, but trust me, it can happen!!) Who knows, but we are staying away for now...no need to push through the pain of not even being able to sit.  =(

Last night, spur of the moment again, I gave her some watermelon. It was another food on our list to trial, so I just did it! Cody was having some and she was reaching for his plate.  I cut her up a couple small pieces and she loved it.  She cried and cried when I wouldn't give her more though.  I didn't want to overload her on the very first day of a trial though.  If a trace amount of a trigger food can make her vomit til bile and show shock symptoms, I defintely don't want to fill her up on a new food!

Oh! And she FINALLY got her first tooth!! At 13.5 months, wow!  =)

MUFFINS!!!

Brynn's favorite food: Muffins.  A fellow FPIES mom, who comes up with some amazing recipes, posted a recipe for Sunny Bunny banana muffins.  Well, Brynn can't have bananas, so we improvised and figured out something that works for her!  We used sorghum flour (new), potato starch, baking soda (new), sunflower seed butter, sunflower oil, and a natural cane sugar (new).  The first time I made them, I used pears, and just last night I made some with strawberries.  They actually aren't THAT bad!!  =/  The sunflower seed butter (tastes exactly like it sounds, lol), overpowers all the other ingredients, but Brynn LOVES them.  She pushes all other food to the side (well, floor I guess) and asks for more muffins.  She wants nothing to do with strawberries, unless they are freeze-dried. Maybe it's a texture thing again.  Oh well, she can eat muffins!!  This is super exciting--I can use that recipe and make bread, a cake...oh the options!!!!!!! Thanks Amanda!!!

She's still randomly gagging and spitting up from food texture.  Not really the vomitting anymore, which is nice, but I hope she gets over this gagging thing soon! 

Yesterday, we were at my parent's house and we were all chatting on what we were going to have B try next.  I, (sort of jokingly) said oatmeal, and my dad jumped on the idea and within minutes I was making her oatmeal.  I have no idea why I all of the sudden had such courage.  She has been doing so well lately with food trials and I just figured, why not? 

So far, so good. She did fine with 1 tsp last night and had 2 tsp for supper tonight.  Her rice reaction was after the 4th or 5th ingestion so we are not for sure in the clear yet....but like I said, so far, things are going ok!!! YAY!!! I'm feeling pretty empowered right now!!  She has passed every food trial since we switched her formula to EleCare.  We've had a few mishaps (wipe, juicer cross-contamination and increasing her probiotic too quickly), but otherwise, things are going SO WELL!  Thanks for all the continued support!!!

Variety? No thanks.

We have finally built up a tiny litte menu for Brynn.  Her safe foods are: pears, sweet potatoes, white potatoes, blueberries and now strawberries!!  We can also use sunflower oil and sunflower seed butter for cooking (however still need a grain to REALLY make something!!).  Great right? UGH. She has now decided to either gag and throw up while eating (texture issues) or just skip eating and throw the food on the floor.  There were 2 days last week where I decreased the amount of formula she took in because I was thinking she could actually have a little meal and some snacks in between the meals. But no, we are back up to the full amount again.  I guess we just keep trying and hope this is just a phase!!

Another thing I wanted to vent about is doctors.  The kids' pediatrician that they have both ALWAYS seen, pretty much from birth, is leaving the clinic we go to.  Trust me, I dug for info and found out where he was going, hoping it was just another local clinic, because we would have no problem switching clinics.  Unfortunately, he is going somewhere a little too far.  =(  When I first came to him with Brynn's diagnosis, he had not heard of it.  I was prepared for that, so brought him some info that our allergist had given us and had gladly accepted the info and appeared to be willing to learn along side of us.  Now that he is leaving, we have been forced to find a new pediatrician.  I did a little research and found one on the clinic's website and looked at her profile.  It said her special interests were food allergies and chronic illnesses.  JACKPOT!!! I was so excited and I thought maybe this was a blessing in disquise.  SO WRONG.  We saw her for Brynn's 1 yr appt and it was alright....nothing what I was hoping for, but after much thought, figured we'd deal with the situation and manage without a ped on board with the FPIES diagnosis.  She questioned me...no no....she DRILLED me on a couple different topics, one of them being, why on Earth I would bring Brynn to New Jersey to see a doctor.  She asked me numerous times how that appt would benefit Brynn and I explained to her that Dr J could possibly test to find out what foods would trigger a reaction for Brynn and maybe give us some direction in what we were supposed to do with Brynn's condition.  Why WOULDN'T we go?  If seeing this dr could in any way help our daughter, why not?  She just sort of shrugged and moved on. 

Fast forward to a couple weeks ago.  Our daycare needed some papers filled out for Brynn and her special diet so Danny brought them to the clinic, asking the receptionist to give them to our old doctor.  Danny's company also had some papers they wanted filled out just in case Danny would have to take some time off due to Brynn's health.  I picked them up a few days later and the receptionist had given them to the NEW ped to fill out.  So I looked what she wrote...on the daycare forms, questions were skipped, and it was just half-ass filled out.  When I got to the papers for Danny's work, there was a post-it on it reading "this needs to be filled out by the allergist or GI specialist, not me".  BULL.  Luckily, we had the allergist appt so I just brought the papers to him and he filled them out.  That pushed me over the edge.  I'm not looking for a dr that knows everything about FPIES, all I'm looking for right now is someone who isn't going to blow me off and say it's not real or it's no big deal.  Someone who will listen when I say Brynn can't have a specific medicine because of a previous FPIES reaction to it.  So if anyone knows of a great ped in the surrounding areas, please let me know! I friend of mine mentioned one doctor, and we plan on seeing her for the next appt. Wish us luck!

What to trial next? OATS???? That would be a HUGE pass for us, but like I said in a previous post, it could potentially be a HUGE fail as well.  Hmmmm

Allergist appt today

We had an allergist appt today.  And holy crap, Brynn has gained almost 2 lbs!!  What a shocker!!  Wow, I love that EleCare!!  =)  He was happy with the way things were going, but wants us to re-trial a couple foods....CORN being one of them. Oh dear lord, I don't know if I can do that!  Corn is SO scary--it's in EVERYTHING.  I'm afraid that if we trial it again, the reaction will be worse than last time and it will just keep building until we hit a full-on FPIES reaction....the vomitting, lethargy...shock.  Terrifying.  But he said that he thinks the reason she may have been failing so many foods could have been because of the old formula she was on--and then underlying chronic inflammtion in the gut.  So...to trial corn or not to trial corn. 

He also wants to trial oats.  Another scary food for us.  It seems that rice and oats go hand in hand with so many other FPIES kids, but then again, all kids are different and no 2 kids react to all of the same foods.  Yikes.

After our appt, B and I met up with our friends, Kendall, Brian and Kara....Kara being another FPIES baby.  We went shopping at Trader Joes and Kara just wanted to keep hugging Brynn.  So cute! 

We trialled blueberries last week and they are a pass! YIPPIE!!  At first I had to peel them (Yes, very tedious, but well worth it) and now this week, she is eating them with the peelings.  She still spits out most of the skins, but at least I don't have to sit and peel every single one of them anymore!  She still doesn't have any teeth, so I cut them in fourths and she does great with them.

Think happy FPIES thoughts for us this week!!  Strawberries maybe???

PCRCD results.

Yes, that's right, we FINALLY got the results of Brynn's visit to the PCRCD in New Jersey!  I open the email from Dr J and see a chart with a whole bunch of words that I have never heard of and numbers that I have no clue what they mean. (SIGH).  At the bottom of the chart, this is what Dr J reports:

Relatively low production of counter-regulatory cytokines (sTNFRII and IL-10), but she is starting to produce TGF-b.


High IFN-g production with soy protein.


Th cell cytokine expression-relatively skewed to Th1 (IFN-g) in response to polyclonal T cell stimulant (SEB).


Responses to TLR agonists are within normal limits.

HUH???

So, I fwd the email to a good friend, a fellow FPIES mom, who has done a ton of research on
FPIES and ask her if she will de-code this for me.  I also emailed Dr J back and asked her a few
questions to help me understand what these results mean.  After reading their responses, as well
as staring at B's chart and googling TNF-a, IL-6, IL-1b, IL-10, IL-12p40, sTNFRII, TGF-b (the only
one I already knew, lol), CCL2, IGN-g.....Ok you get my drift.  I had to good pretty much everything.
 I then had to look at Brynn's specific corresponding number and figure out what the heck that meant.
 At the end of a few LONG days of emails and decoding, the results are as follows: 

We need to stay away from dairy, soy and wheat...the 3 things Dr J tested.  Soy being the most
 important one for her to stay away from.  Dr J said what isn't something we should trial anytime
 soon, but that somewhere down the road, she may be able to tolerate it. She is building TGF-b
 (counter-regulatory mechanisms)- just not quite enough for these foods, but shows that her body
is getting there (it does know what to do- it just needs more practice and time).