Ellie’s FPIES safe foods update: cauliflower

Cauliflower and blueberries. Look at that variety folks! Ellie can eat TWO things! TWO FPIES safe foods! We are back to having options in flavors. Turns out she doesn’t approve as much of cauliflower as she does blueberry. She does, however, love the little toasty roasted bits of riced cauliflower cooked in the oven. It might be thanks to the heaping amounts of sea salt that goes on them. This girl loves her sea salt, just like her Mom.

Seasoning for safe foods- yes!

Oh, and sea salt is back too! We have seasoning again – thank goodness! The sea salt has helped greatly with the addition of the cauliflower. I’m going to be honest. I think it helps me eat the cauliflower selections more than Ellie, some just aren’t all that tasty without salt. Flavorless cauliflower puree anyone? Thank goodness for salt, I can’t say I have ever craved plain fartflower, sorry I mean cauliflower…

FPIES fail

We did have an FPIES fail recently. Beef. I was praying to be able to have a protein that was a pass, but sadly not this time. After her two passes of blueberry and cauliflower I was optimistic that she would be able to get even more passes, and that maybe we were over the rough stretch of constant fails. The reality is this though: she does have two passes, but she still will most likely fail occasional foods. This is chronic FPIES. I am trying to remind myself constantly that it doesn’t mean we will get into the downward slope of fails breeding more fails.

To prevent the failing of multiple foods at once, like we had experienced prior, we are doing long food trials and then long recovery periods after a fail. This ensures that we can be certain a food is indeed a pass without hesitancy as well as making sure her body is healed after the fail and ready to pass the next trial! In theory. Cross your fingers and say your prayers.

Allergist update

Meeting with the allergist lately confirmed we are on the correct path with Ellie’s two FPIES safe foods, but we now need to switch our focus a bit. I have been so desperate that Ellie be able to eat anything other than ice, water, and formula, that I wanted her to have a couple FPIES safe foods under her belt before going all out with her therapy again. Not that we have stopped working on it. However, now the allergist wants our focus with Ellie to be on her eating ability. Back to working intensely with our eating therapist (SLP) to gain an ability for Ellie to chew her food so she can eat more than purees, powders, and the like.

Upcoming FPIES food trials

This doesn’t mean we are going to stop trials, of course not, she still only has two FPIES safe foods! So, we will be trialing Neocate Splash again now that she is at a good baseline (read post here discussing our previous trial of Splash). We will also trial broccoli. Yahoo. Another stinky vegetable to smell up the house while dehydrating in the dehydrator or making crispy bits in the oven. At least we have sea salt. (This is my current mantra; our food world was in desperate need of salt.)

No really, I don’t mind the smell. It just gives me a good reason to bake something to make the house smell great again. I never mind baking, baking therapy is where it’s at! And if broccoli ends up being another FPIES safe food for Ellie I will plug my nose and puree, dehydrate, rice, toast, and powder away!!

Change of safe food presentations

I do want to point out a change I have made recently with Ellie’s food that I offer her. Previously I had made a lot of options of food that allowed her to feel comfortable putting food in her mouth. For her this meant nothing messy, or anything that would come apart easily in her mouth – that caused immediate gagging. So as discussed in my previous posts about squash presentation (part 1 and part 2), it was a lot of dehydrated squash in different shapes and sizes. This allowed her to get used to the flavor and build her confidence in putting food in her mouth. However, this didn’t really lead to her being able to easily chew and swallow the squash in those forms. We have since shifted gears.

What’s for dinner mom?

Ellie now is comfortable with putting food in her mouth, well blueberry at least and some cauliflower. She now needs to work on eating – specifically the chewing of food and then swallowing. So, I have focused her food options on being more easily chewed and swallowed. The idea is to gradually add more texture to her foods so she can get used to chewing instead of just mashing with her tongue. She is getting pretty good at her blueberry and cauliflower powders, blueberry puree, and blueberry mush (powder with salt and a little water). She even is able to eat some cauliflower toasty bits but it takes her a while. This is an incredible amount of progress for her from a few months ago when she wouldn’t go near puree. Now she willingly eats some and sometimes even asks for more! Slow and steady wins the race.

We have already been working on trying to entice Ellie to chew food with her molars. We offer blueberry puree popsicles, blueberry cracker sticks, a feeding tool dipped in puree, ice chips, etc. But I’ll be darned if we don’t have the most inventive and determined child at finding ways around chewing. It can be hysterical in between the moments of frustration. Ellie’s eating therapist has been helpful at offering suggestions for us, but we are, as I mentioned previously, going to really focus on eating now, with her help.

Eating therapy

Whenever I hear ‘Eating therapist’ I think of a therapist surrounded by tasty baked goods. Muffins, breads, cookies, cake, and donuts – always donuts. Then I am sadly brought back to reality when my mouth is not full of fried or baked sugary goodness. Side note, can I go to that kind of therapy? Or maybe be that kind of therapist? I’m going to test it out on the neighbors…

Ellie’s eating therapist is an SLP (Speech – Language Pathologist) and she helps Ellie with well, eating. Voila! Now you know. No, she is actually so well educated on so many aspects of the mouth it is beyond me. She evaluates Ellie’s chew, swallow, reactions to texture and so many other related aspects that I can’t even begin to go over all of it. In summary, we are thankful for her. Ellie will meet with her with more frequency as we try to overcome all of her oral aversion. We have made so much progress thus far, so I have hope!

Well, that’s it and that’s all. We are off to the races! On a retired pony who only wants to eat grass, but hey we are taking steps forward at least!