FPIES and A/SERT at Three

I wanted to wait to write an update until we had news. Not just news, but good news. Maybe it’s just that I thought if I didn’t write it, things could change improve. We had hope for an alternative approach, A/SERT, through a chiropractor to maybe give Ellie a chance at marked improvement. More on that later. But as you probably have guessed, that hasn’t happened. In fact, we have continued to experience food fails with her trials. At least she is holding firm to her millet. Cooked blueberry still seems to be a pass as well, but we lost her “crunchy blueberries” unfortunately. It could be worse. But frankly, it could also be a whole heap ton better. FPIES at three years should be improving.

FPIES at Three

In the FPIES community it is understood by many that the magic age is 3-years-old. At three, a child with FPIES is typically getting close to being over FPIES, or at least showing great improvement.

Ellie’s third birthday was this month. That milestone has come, and we have made no progress.

It has been three long years of this unrelenting battle. I wish we could say, “But look at how far we’ve come because we’ve fought so hard.” And we have fought HARD! This fight is SO hard.

We have come a long way since before even knowing what FPIES even was. I mentally thought ‘F* pies’ was more accurate when I couldn’t eat anything while nursing Ellie – I really missed baked goods. We have had so many tests, medical team appointments, therapies, food trials, fails, and learning. We have also had some success with continued growth and two(ish) safe foods – so not all bad. There has also been noticeable progress since not knowing what was making our baby so miserable with concerning symptoms. For that I am grateful.

But even through all of that, “stuck” seems more accurate of a description right now instead of “progress.”

Ellie’s FPIES Third Birthday

As I had mentioned, Ellie recently celebrated her third birthday. The focus could not be on food, so we blew up balloons, hung streamers, had some decorations, and some gifts. We played, laughed, and I tried to not think too much about how it was so hard to be in this FPIES battle.

Ellie knew she could blow out candles, but she couldn’t have a cake until she was bigger. Thanks to a wonderful and thoughtful friend, we had a big inflatable cake that was taller than the girls and Ellie blew out three candles stuck in her blueberry millet ‘pancake.’ This, however, did not stop her from asking repeatedly throughout the day when she got her “big birthday cake with candles.” Heart-breaking.

We also tie-dyed shirts together as a family, which was a hoot and a half! Having a gregarious 3-year-old tie-dye is not for those afraid of color – everywhere. It is also something that should only be done outdoors (in just undies for younger kiddos) and without the fear of them or you getting covered in colors. I am typing with beautifully colored hands right now. But all of that was worth it to see the joy on the girls’ faces with their newly created shirts.

My husband said he would only wear his shirt the one day, but since the girls had SO much joy in all matching, he has changed his tune. I’m sure he will happily wear his beautifully colored shirt – of blues, pinks, and purples – with the girls every weekend if they should ask. He is a good dad. 😊

Optimistic “Laters”

Through all the things that are ‘different’ for Ellie, I try to keep things optimistic for her. It’s not a, “you’ll never eat this, or get to do that,” but instead a “not now, but maybe when you are bigger.” She tells me all the time now that foods will make her grow big and strong when she’s older. I’m sure hoping and praying that’s true.

Hoping for Foods at Age Three

The diversion away from a certain food worked better when she was younger than it does now. Especially with foods that were once safe, like olives and raw and “crunchy” blueberries. Those foods cause many tears when she can’t have what she asks for. Ellie doesn’t ask for much in terms of food, so there are often hidden tears from me, too, when I gently tell her “no.” No, she can’t have those right now since they made her tummy icky, but let’s find something else to eat or do.

I don’t want to have to tell her ‘no’ to every single food anymore. I just don’t. Heck, I will eat *slimy and squishy – gag-inducing* grilled zucchini every day if it meant this child of mine could have one more safe food. I’m really hoping that me eating one of my few true “yuck” foods isn’t necessary for this to happen. Been there and done that *YUCK*.

Let this girl eat cake, for crying out loud!

Alternative Approach Background

I promised more information on the alternative approach we are also trialing with Ellie. Leave no stone unturned – we have a field of turned stones at this point. But there was this odd-shaped rock left in the corner…

Let me give you just a bit of a back story on why I even knew about this and considered it. My dad had a bajillion allergies as a kid. No joke, he could only eat 8 foods until he was in 2^nd grade and had allergy shots up the wazoo. His most severe allergy was to dogs, and would almost immediately not be able to breathe. That, unfortunately, was the allergy that he didn’t outgrow.

When I was a kid, my dad still struggled with his dog allergy and it kept him from being in homes with dogs, much less having a dog of our own. He was told of this alternative approach to allergies called NAET. As an attempt to be able to have a family/hunting dog, this very scientific man with no belief in this “voodoo” approach, went in to give this non-invasive NAET a try. A couple of months later, we started looking for a dog, as my dad no longer had any allergy symptoms to dogs. Over 25 years later he still is allergy free – who would have thought it?!

NAET vs A/SERT

I looked for a NAET provider (chiropractor who is trained in this approach) in our area. Turns out the closest one is across the state, which was not an option for us as we still can’t travel with Ellie – much less every week. After doing more research, I found the next closest thing was another non-invasive approach very similar to NAET called Allergy/Sensitivity Elimination and Reprogramming Technique (A/SERT). The main difference between the two – as I understand it – is the additional use of a cold laser with A/SERT, but still non-invasive.

A/SERT is an allergy treatment that is holistic and uses Applied Kinesiology (which is muscle response testing) and chiropractic principles. Some chiropractors use acupuncture as well, but the provider we go to utilizes the cold laser instead (thank goodness!). If you want to read more about A/SERT you can look here or google ‘allergy sensitivity elimination reprogramming technique’.

This sounds bizarre, trust me, I get it! My history is as a pediatric nurse, but I also know that there are other things that I can’t explain. At this point, I am willing to try anything that may help Ellie – that doesn’t harm her at all in the process.

A/SERT progress

As to be expected with Ellie, things have not gone perfectly with A/SERT. What the doctor (chiropractor) says she should be clear of can still result in a food trial failure. Also, his “clearing” of her other FPIES reactions hasn’t “stuck” from week-to-week, so I still won’t test or re-trial those foods.

The doctor has stated that it may take a while for her body to get “calmed down” enough for the clearings to take effect. In a sense, her body needs to learn how to remain “cleared” of the specific food sensitives. To help her with this, she also receives specific homeopathic drops in her belly button to aid her digestive system. I told him the main stipulation was all non-invasive, including her not ingesting drops.

Well, this last week after her failing her crunchy blueberries, and with no progress, he told me about the homeopathic drops he had used with another FPIES kiddo with success. Although, she would have to put one drop under her tongue, not in her belly button. He tested her in the office (through muscle response) and her body “said” she was okay with these drops.

Since I take everything like that with not only a grain of salt, but the whole salt block, I will run them by the dietician and do a trial just for the drops if we go ahead with them. It’s hard for me with my nursing background to fully embrace and have complete confidence in this approach, but our eggs are in this basket without another basket option in sight.

Benefits so far of A/SERT

I will say that A/SERT has been helpful in confirming fails for Ellie. I can tell the doctor what food I think she is failing, and he can test it and confirm my suspicions. The reason I believe this is maybe accurate is because she remains solid in her millet, even when other foods fail. There is consistency in her response that gives me hope for accurate answers even if it isn’t “curing” her. These muscle tests also indicate which foods she has a greater chance of passing vs what would be a huge FPIES fail, I appreciate that too. I will take any help I can get.

Still Prioritizing Medical Team’s Guidelines

Just to reassure everyone (and myself), we are still prioritizing our original plan and approach to FPIES with Ellie, as well as following the guidelines of her medical team. This A/SERT is our second-string approach. And yes, her medical team is aware of it and have signed off on the attempt. When they don’t know how to help Ellie anymore either, everyone is open to new ideas, especially when there isn’t any harm to Ellie in the process.

To have so many people tell us, “We just don’t know what to do at this point,” has been incredibly hard over these past months and even years. Why not try something else like this A/SERT if there is even a hint of partial success?

I will let you know how this out-of-the-box approach goes. I am hoping and praying that, either through this alternative approach or through Ellie turning three, one way or another, we will be able to make some permanent progress.

The next food up is chickpeas or garbanzo beans – hey, maybe that will be the winner and we can become chickpea farmers! 😉

Catch up on the rest of Ellie’s FPIES journey here, and stay tuned for the next update.