We're losing weight.

We had a meeting with our GI again this Wednesday and immediately following, we met with a new dietitian. She has years of experience with Metabolics and Genetics so I felt confident she would be able to guide me the best. Annabelle was doing well, but poor Mady was heading downhill with the yucky tummy bug that took over our house the last week. I was alone with both girls and zero patience for the day. I prayed this time in the waiting room, as I do every single time before we see a doctor and invest more time in their hands and at their mercy – only today, I prayed for patience to carry me thru the rest of the day. Everyone knows their limits. I hit mine.

Fortunately, thankfully, AK took off work early and saved us all! :the angels in heaven sing: We met with our GI and she reviewed the last several weeks with us. She was shocked the genetic team wasn’t able to confirm the diagnosis she was also convinced we were fighting, but this news led her train of thought down another winding path. 1^st , she wants a scope done soon. As soon as Annabelle’s little cough is gone, I’ll schedule an upper and possible lower endoscopy to again biopsy her GI system. This will be our third endoscopy in less than a year. I absolutely hate anesthesia (a fear I am learning isn’t going away) and the recovery after the scope’s. Annabelle always, always ends up with tracheitis (whatever it’s called.. her esophagus gets so irritated and inflamed we end up on steroids each time.. steroids = roid rage = unhappy, uncomfortable baby = no sleep = bitchy mommy. You see how this all intertwines now? Lol) I sadly, am looking forward to this scope for a couple reasons though. Mostly because I have introduced several foods into Annabelle’s Diet without any true confirmation if they’ve been safe or not. This is quite a reckless move with a child with Eosinophilic Esophaghitis and our GI agreed. She understood why I have done so and applauded the well thought out decision. But we both felt it to be the safest option to repeat a follow-up scope and see what our newest biopsy’s are reading at this point, compared to the last over the summer.

Consult With The Dietitian

Annabelle’s lost weight.. a lot. Fortunately, she’s continued to hang on the curve in the 50% percentile but she’s barely thriving. During the past year, she would suddenly start falling on the curve and that is scary (not growing in height or head circumference and losing weight), so maintaining isn’t bad. That being said, she should absolutely be gaining weight and she’s lost L Our goal was to grow at a rate of 0.8cm x month (I believe) and Annabelle’s height only moved at a rate of 0.34.

With her weight dropping as quickly as it is, we opened the discussions heavily into what could be the cause. During the last month or so, I’ve attempted to lower the amount of formula she’s taking by tube feedings in an effort to increase her appetite to start eating more meals of food with substance, like a normal kid would. (All this per the Geneticists & Dieticians orders last month). We lowered her feeds from 40oz x day to approx. 32oz x day. It’s only been the past 7 days that Annabelle has been on Elecare, so I don’t think that could be the culprit to the weight loss this quickly.

Annabelle has been eating a LOT, in my opinion at least. She’s eating more now than she ever has in her life. She eats a huge array of fruits and veggies now and I most recently added in white bread and pasta in an effort to fill her tummy better so she wouldn’t always be begging for food. Apparently it wasn’t working. Even with the amount of fruits and veggies Annabelle is getting, she isn’t getting nearly enough calories or value of nutrients in her meals to thrive. I was starving her L completely unknowingly, doing what I thought was best and as directed by other doctors, here I was again doing what is dangerous to my childs health and completely navigating it blind. THIS IS MY BIGGEST FIGHT / FEAR / PLEA FOR ANSWERS! This is precisely why I cannot stop begging for a diagnosis so I can better understand my own child so I don’t hurt her!

Here’s Our Problem With Nutrition:

The calories  that she were to get from food to gain weight, isn’t safe to be part of her diet. So we’re back to the formula as the main source of nutrition. We increased her formula intake back to where it was before, and also modified the way we’re preparing her feeds to make the formula richer with the fats/proteins/nutrients that Annabelle needs. (Increase from 22.5cal/oz to 30cal/oz) Our feeding schedule has shifted a little and involves more waking during the nights to hand new / fresh bags of formula, but that’s ok. We surrendered the idea of actually sleeping again a long time ago.

In addition to the tube feedings around the clock, we have also challenged her with the following feeding goals:

The goal is to get Annabelle to 1200 calories x day. 

• 8 servings of grains x day. ( 2 servings for each meal and 1 at each of her two snacks)
• 3 servings of vegetables x day.
• 2 servings of fruits x day.
• 3 servings of fats x day.

Annabelle is already failing the challenge from the point, the kid just has no appetite to eat this much! I am failing the challenge by trying to lower the amount of fruits and veggies (used to be 90% of her diet) and adding safe fats and grains. Im scared to death of fats and grains because they are easy EoE triggers. So we’re stuck at a tough place.. we need Annabelle gaining weight and thriving, that comes with eating. We cannot have her 100% reliant on tube feedings, because Elecare scares the begezus out of me and I fear if that is all her little body is receiving, we will end right back up where we were months ago and us losing our little girl.

Right now we are waiting. We’ve modified the formula and are trying our best to trick/beg/make Annabelle eat as much as she can during the day and also crossing our fingers her little cough goes away soon and we can schedule another Endoscopy. Once we have those biopsy results, that will tell us if the foods we have in her diet right now are even safe from an EoE perspective and if we can continue offering grains/fats, or if they need to be removed and we all meet back at the drawing board. Clearly, the goal is keeping Annabelle as safe as earthly possible until we have all more definitive answers.

The biggest downside of our 3 hour appointment, was granulation tissue. I swear I JUST healed it!! Monday evening her tummy and site looked great still. Tuesday morning the nurse said it hadn't changed and looked beautiful. Tuesday afternoon it looked like this. OUT OF NOWHERE!!! The GI wouldn't let us leave without treating it with a Silver stick and burning it off. No words necessary. :(

Possible Diagnosis

The other side of the conversations we were having during our visit was a plausible diagnosis mentioned by our GI. It’s called FPIES, Food Protein-Induced Enterocolitis Syndrome.. similar to Eosinophilic Esophaghitis as it is a body's reaction to certain foods. The symptoms and appearance of FPIES is very similar to what Annabelle has been demonstrating when we were exploring OTC. Lethargy, Blood Pressure, Body Temperature Fluctuations, Pain, Failure to Thrive, etc. It isn't a diagnosis that can be confirmed by testing or biopsy, the diagnosis is made clinically by exploring the symptoms the child has and by a knowledgeable GI that understands FPIES. This is something our GI is considering, heavily, and we will discuss later. My main question that I had was of course, "If this is FPIES, does that mean we will be able to wean away and lose the tube?" My stomach sank when she smiled and didn't answer me. I knew the answer at that time. She explained that children with FPIES usually will not come off their feeding tubes because their diet can never be nutritionally complete without the formula (hypoallergenic, made in a lab, medical food). I hated that answer.

At this point, I am not fully convinced but it absolutely does seem plausible. Mostly, I am just eager and purely focused on Annabelle's nutrition right now, I have little time to think about diagnosis #92340 that will only let me down. I want away from tubes. I want a normal little girl. I want her to be healthy. Mostly, I want to be able to breathe and know that I am not accidentally hurting my daughter in our care for her! I want to be able to take her to a restaurant tonight for her big sisters birthday dinner, and allow her to eat food like a normal toddler. Instead,she'll be wearing a backpack and I'll be forcing her to stuff her belly with more food although she already feels full. Gosh it just all feels so wrong and backwards to what life is supposed to be about!