Importance of a Parent Advocate

I am holding my breath as I write this – I can’t quite believe it myself. However, I think I might actually be able to say we are indeed making progress again. We are walking by baby steps and a glacier just passed us in the right lane, but as long as we are going forward, I am thrilled. Ellie has her one safe food back – blueberries for the win y’all! This progress is thanks to me trusting my Mom Gut and moving forward as the parent advocate for Ellie. It’s about time.

Catch up with Ellie

We have been here before. I have even shared this news with you all before, but that was around 5 months ago. How are we still at one safe food you wonder? Well, well, well my friends, let me just tell you – I have no idea.

You can catch up on the few updates over the last 5 months here. However, I’ll also summarize it for you so I can better explain our current status. Ellie had blueberries as a safe food after her gut rest in the fall. She then was able to add cauliflower as a safe as well. It was right after confirming that cauliflower was a safe food that we started the slide backwards losing all her progress to that point.

She was up through the night, wasn’t wanting to eat, had stools that were worse than baseline but varied in the level of concern. (Did you like what I did there? Avoided all talk of mucus and blood in poop for those that are squeamish. Oh wait – sorry, this is our LIFE.)

Basically, things were not going well but I had no reason for it. Her pediatrician, allergist, and registered dietician had no reason for it. After trying gut rest with no improvement and several mentions of a feeding tube again – out of desperation for a solution, it was all left up to her GI specialist.

Let me start by saying I appreciate our GI specialist. He has been such a huge help along the way with this FPIES diagnosis. However, our appointment with the GI doc ended up with him saying, “She just doesn’t make sense”. I agree, she wasn’t having an FPIES reaction. But she WAS having some kind of a reaction.

Ellie the rebel *gasp*

Ellie is a rebel. I never thought I would have a child that is a rebel, as I am very much a by the book rule follower. Ellie’s rebellion though is not wearing her hat backwards and saying no to everything I ask her to do. (Although, we have had some of that as well – the little stinker!) No, her rebellion is that her body isn’t following the rules. I’m not even talking about the FPIES ‘rules’, or let’s just say ‘expectations’ as there are no set ‘rules’ in FPIES as The FPIES Handbook informs us.

It’s correct to say that Ellie is a rebellion with FPIES expectations as well. However, the last 5 months we have been battling something in addition to FPIES.

Ellie started with constipation, from her diet of only formula during her gut rest in September. We tried milk of magnesia. She didn’t react exceptionally well to that. She fought each little bit (I don’t blame her; it is a weird chalky texture – gross). This also increased her oral aversion, resulting in Ellie struggling even more with each feeding.

So, on the recommendation of her GI doctor and allergist we switched her to Miralax. Just a teeny tiny bit each day, I’m talking like 1/16 of a tsp when a normal dose for her size and age is 1-2 full teaspoons. The doctors suggested Miralax for Ellie because of its lack of any food protein structure.  Therefore, there shouldn’t be a way she could have an FPIES reaction. And that, I’m sorry to say, is where the doctors got stuck.

Doctors get stuck too

I’ve mentioned before and I want to mention again, we love our doctors! We couldn’t do this without them, and I fully trust their opinions. However (dun dun dunnn…this is suspenseful music, for those here for the drama 😉 ) this is where I found I have to realize I KNOW my daughter. I have to ADVOCATE!

The last 5 months we have battled symptoms, not FPIES, but symptoms non the less. These symptoms caused so much anguish in our household over Ellie not eating, not sleeping, and acting so uncomfortable. No one wants to see their child suffer, especially not for 5 months. But what made me crazy (yes, I do believe I qualify for that title) was being told she, “Didn’t fit the FPIES picture with her symptoms”. This left more than a hint of doubt and questioning of my reporting of Ellie’s symptoms as her mom.

Now the doctors were kind enough to say that they did believe me, as they know how important it is for parents to advocate for their children. However, I still heard their mental “but…it doesn’t make sense” and that was hard.

Be a parent advocate for your child

This is when I tell you the importance of advocating for your child. Previously as a pediatric nurse I mentally knew the importance of talking with the parent and listening to what they were saying. As a parent they know their child the best. I also knew to listen to the concerns of the parents; they often had insight into their child’s history and present health.  Parents spend a lot of time thinking about and caring for their children.

Although I will admit that, at least for me, it was easy to be stuck on what I thought was going on medically with the child, based on presenting symptoms. Then try to reassure the parent that the child was getting the treatment they needed, because the majority of the time, that was the case.

There were those few parents though who stuck to their guns and kept advocating for their child despite being told that their child had the correct diagnoses, and nothing was being missed. I wish I could go back and give them all high fives and huge hugs of encouragement, even if their concerns were thankfully misguided and their child’s diagnosis was correct with the correct treatment received.

It is HARD to stand up to medical professionals who are saying that your child doesn’t make sense, and your ideas as a parent don’t make sense. For those of you who are advocating for your child against opposition – even if it isn’t medical – I know it’s hard. You are an excellent parent, and your child is so fortunate to have you!

This PSA was brought to you by a tired but determined parent. Okay, off my soapbox now.

This parent advocate rebelled

The doctors said it didn’t make sense, I understand that, BUT my mom brain told me I needed to stop the Miralax. It was the only thing that DID make sense to me.

I also wanted to DO something for my daughter who was constantly suffering. Just waiting to see if the other GI specialists that our doctor was consulting with had different ideas, didn’t allow for improvement right NOW. So, I chose to – after much careful consideration – go against the advice of Ellie’s doctors. My plan was now to stop the Miralax and pick up the blueberries again. We had to do something for her constipation. Then if it truly was the Miralax, that meant her beloved blueberries were most likely safe and they helped a little with her constipation. Win all around – we hoped.

Now, let me reassure you, I didn’t go against all advice of our medical team, like I said, I’m not a rebel – unlike Ellie. More on that in a bit.

Advocate success

With no Miralax on board, Ellie’s unexplained symptoms improved over the next two weeks. She was beyond thrilled to have a food to eat again, and especially one she liked – well, for as much as Ellie likes any food. I was ecstatic to feel affirmed in my ‘mom gut’.

We now were, and still are, stuck dealing with constipation with Ellie. I am thankful it isn’t severe enough to land us in the hospital, as I saw several times in my nursing career – those poor kiddos. However, it is significant enough that it still has its own symptoms on the bad days. Oh poop.

Parent Advocate but not a complete rebel

As I said before, I didn’t go against all our GI specialist’s advice – I do trust him.

The rest of his advice was to just introduce several new foods different from those she has already trialed (one at a time, of course) and see what happens. Sounds like fun, right?

Well, I happened to be pouring over The FPIES Handbook again before talking with the doctor and read about millet being one of the ‘safer’ pseudo-grains to try. Millet seemed about as good as anything else to try since it was so different from what she has previously trialed. Millet also offered other nutritional benefits to her diet as well as her GI system.

After consulting with Ellie’s Registered Dietician – see, not a rebel – she confirmed that millet would be a good next trial for Ellie.

Winning as a parent advocate

Ellie has officially passed blueberries – again. Everyone is beyond happy for that, especially Ellie. This girl ADORES her crunchy blueberries. You can see a selection of all of her blueberry food options from crackers to popsicles coming soon, this girl gets options!

Since we have finally made progress again with her system not being so upset by the Miralax, we get to trial millet. Let me tell you how excited this carb loving mom was to be able to finally trail a pseudo-grain. Our Registered Dietician suggested this brand of millet flour due to its high quality and lower risk of cross contamination with other food. Also, when trialing foods for FPIES, cooked food is safest to start with. So, I first made blueberry puree and millet flour ‘pancakes’.

Ellie was so excited to have these special pancakes but turns out those are only appealing to her fresh. After a couple days of those – she lost her excitement even for the fresh pancakes. Then Ellie began to not want to eat the food she was supposed to be trialing. A familiar struggle in our home.

Until I made millet crackers.

Millet crackers have won this household over – sorry blueberry crackers, you just aren’t a proper cracker. Millet crackers are actually like a cracker, even pretty tasty! Ellie now asks to eat with us in her seat at the table – be still my heart.

Waiting, Wishing, Hoping

This is where I come back to writing all of this while holding my breath. Okay all you literal people out there (my dad and husband included) I see you – no, you are right, I have not been holding my breath this whole time – only like half of it. 😉

My hope is growing, but I am scared to let hope take complete control. As you know, we have been down similar hopefully stretches of our journey several times, only to be halted, turned around, or pushed back a few steps.

It’s like the game of Shoots and Ladders! We have been along the path, following the rules, taking it one square at a time (we never land on those darn ladders). Then we have frequently ended up at the top of those slides taking us back a few turns while we are watching the other players climb ladders or at least be making gradual forward progress. I don’t want to slide down with Ellie anymore; I want to let my hope take over and find some of those ladders to climb – or at least get a big spin!

We are currently in the period of waiting through her two-week millet flour trial. I am going to allow myself a break from being the parent advocate. I am going to enjoy that Ellie is making some progress with her eating therapy thanks to millet crackers. Nothing and no-one can take this progress away from me. She is chewing some with her molars and WANTS to eat with us. Please excuse me as I go shed tears of joy over a bowl of millet crackers.

Finally Progress!

Our sweet Ellie is making some progress and that, my friends, is something to celebrate, and SAKES ALIVE have we been looking for something to celebrate with her! I will update you on the results of her millet trial and hopefully let you know what foods we may be trialing next. *Fingers crossed and prayers said! *