A Doctor Referral for One and All

Hey there, it’s been a few minutes, days, weeks, okay months, since I have posted anything here. It isn’t that there isn’t anything going on, or that Ellie has miraculously left her GI oddities in the dust – I wish! I’ll give you all of Ellie’s update shortly, which is mostly waiting on a doctor referral, but first, a little about me.

One in a [Insert Big Number Here]

Unfortunately, I have hopped on the medical oddities band wagon alongside Ellie. “Why on earth would I do that?” you ask. Good question. It seemed like fun? There wasn’t enough on my plate? Our lives were getting too dull? Just kidding, I don’t know. But I do know our family should start buying lottery tickets.

I want to address this, but not dwell on it too much, since this blog isn’t just about me. In summary, my eyes haven’t been playing nice and then my head joined in on the game, too. I seemed to have won the honor of a rare eye complication paired with chronic migraines, woohoo! It unfortunately took a few months to get this diagnosed, so it’s been a bit rough since October. Thanks to some chronic inflammation of the front of my eyes, as well as pupils that don’t constrict as they should, I have experienced photosensitivity and pain with eye movement. No reading, using screens, being out in the light – well you get the picture. It’s been a bummer, to put it mildly. The dark house that my family has endured was really festive during the Holidays with the white twinkle lights as our only light source. Now that we have made it to April, I’m over the ‘atmospheric’ vibe, and I’m absolutely sure my family is too.

My Doctor Referrals

Thanks to some helpful referrals I finally was able to see an ophthalmologist who helped with the inflammation in my eyes and after some STEROIDS (they were the big gun steroid eye drops) the inflammation is almost gone. I am hoping and praying the symptoms lessen soon as well.

The chronic migraine is most likely associated with my eye issues. It’s a chicken or the egg dilemma, but either way I have both the chicken and the egg. Thanks to clear MRI (great news!) and a knowledgeable neurologist, I am FINALLY on a medication that should help with the migraines – in a few months. Which I guess is better than years?

I am taking advantage of moments of improvement to get this update out. Hopefully it won’t be just this one post, and you’ll be hearing from me regularly again soon – or as regular as I get. I want my life back!

On to Ellie.

Where were we?

I don’t know that I want to cover all the little steps that I missed telling you in-between then and now. And I’m pretty sure you don’t care about reading all the back and forth either. For both of our sakes, here is the summary.

Unfortunately, the A/S-ERT didn’t work with Ellie for her FPIES, and the chiropractor wasn’t sure what to make of her. This seems like a recurring theme here, doesn’t it? After a couple sessions that gave conflicting information and a confused chiropractor, we decided to not travel that road any further for now.

Ellie has unfortunately lost some aspects of her available foods since September. We have settled on roasted millet flour and roasted chickpeas. These, along with her formula of course, have been her only food options since December. For whatever reason Ellie’s body doesn’t like any not cooked food, or even her beloved millet noodles now.

Doctor updates

Because of Ellie’s lack of progress and inability to gain new foods while periodically still losing aspects of her “safe foods,” we contacted her GI doc for any suggestions. His concern was Ellie unable to make ANY progress. Her ability to tolerate only cooked foods would point towards a true allergy but she doesn’t have a true allergy to all foods. Confusing right? Hence his decision to talk with Ellie’s pediatric allergist about moving forward with a referral out of state.

Ellie’s Doctor referral

Both Ellie’s amazing and very knowledgeable pediatric allergist and pediatric gastroenterologist agreed that it was time to seek out other opinions. They had a conversation of New York (FPIES specialists) vs Denver (GI specialists). Denver was the winner. Just on the off chance that there is another GI aspect involved – alongside the much cherished *note the sarcasm* FPIES diagnosis – seeing a GI specialist broadens our diagnostic pool.

Our GI doc went ahead with contacting his colleagues at the Children’s Hospital near Denver for a doctor referral. Unfortunately, they felt they wouldn’t be able to provide any diagnostic help to Ellie when given a general overview of her case. Since it has been a couple months since we received this news and I have had time to digest (ha – because they are GI docs, I’m so punny – sorry) the refusal to be seen, I can just say that it was disheartening to hear.

However, along with that upsetting news came some good news. An allergist who works with the GI specialty program and is also at the top of his field, IS willing to look at Ellie’s case and try to help find some answers.

As hopeful as this news has the potential to be, I will admit, it also is scary to feel as this is our last chance.

The referral wait

Our GI doc warned us in December that it could take a couple months for the referral to go through with the allergist. I thought I understood how long two months was. However, as we have approached the three month mark of waiting, post the Denver allergist acceptance of the referral, I am beginning to think the wait for this referral is going to take longer than I realized.

Part of the difficulty in waiting for this doctor referral to go through has been Ellie’s inability to trial any new foods. Her current team agreed that, since Ellie’s body tends to lose a food with almost every trial, it was best to keep her stable until we get more direction. This approach eliminates the risk of losing her safe formula which is what is fully supporting her nutritional needs right now.

Not being able to offer all the foods Ellie longs to try is hard, but as I know I am protecting her, it makes it possible to say, “Not yet sweetie, when you are older you can try it.”

Ellie’s resilience

“When I’m bigger I will be able to eat (insert every possible food here)”, is a multiple times a day refrain from Ellie now. It breaks my heart every time I hear it. I am so thankful she has the desire to keep trying foods even after the journey she has been on. I am hoping and praying that she continues with this desire to try foods when we finally get a green light to do so.

That’s a wrap

Thank you for sticking out this wait with us.

I appreciate your patience with our lack of recent updates and your continued support throughout this medically confusing period for our family. Hopefully I recover soon and am fully able to focus on Ellie again. I am determined to get answers for her this year! It could happen. (Any “Angels in the Outfield” fans out there?)

Until then, eat some roasted chickpeas with us, Ellie recommends them with sea salt, they’re actually pretty good.

Update in the update

When an update takes you a month to get out, things can change.

During this wait time, I got impatient. Ellie was doing great and requesting food all the time, which of course she couldn’t have. I wanted to give her another texture aside from her “dough” that we make with the roasted millet flour and her crunchy chickpeas. I had enough time on my hands to reason with myself that instead of waiting many more months on doctors to make any progress for her, we could try something that should be “safe” now. Since roasted millet flour and roasted split chickpeas are her two safe foods, roasted chickpea flour should be safe, too. If I could go back and keep being patient, I would. There is a reason the doctors suggested to wait.

I roasted chickpea flour (same brand as her safe millet flour). I mixed it with water and her sea salt and tried to make a tortilla-like food in the oven. For some reason, Ellie called it a “naco” (taco with an ‘n’) and I went with it because it was so cute to hear her say “naco,” but also because what I made was less tortilla and more unleavened bread. Ellie LOVED her “naco” and gobbled it down. I was sure this was the start of new and better things.

Unfortunately, it wasn’t.

Failures breed failures

Ellie had a difficult night that night and I started dreading what was probably happening. Going through a reaction with Ellie when it was a food her medical team suggested we try is one thing. Experiencing a reaction with her when it was a food I trialed on my own carries so much blame.

Long story short, roasted chickpea flour was a fail. And it took down Ellie’s beloved roasted chickpeas with it. I don’t know the right words to express the guilt I feel in this result. Ellie’s one food option that allowed her to practice chewing with her molars (a skill she is working on with eating therapy) is lost due to my impatience in not being able to make progress for her.

I can berate this point time and time again – and I have – but that doesn’t change anything. Ellie is back down to her formula and one safe food. She is still trying to recover fully from her reaction to the chickpeas, so we are all hoping she returns to baseline, we get to see the Denver doctor, and FINALLY make some progress. In the meantime, I’ll be sitting on my hands and patiently waiting and following all advice from the medical professionals.

So back to where I thought this post was going to end. Instead of eating roasted chickpeas with Ellie, eat some FOR her. Heck, since she isn’t eating them with you – toss them in olive oil and sprinkle on the spices too! Someday…