A New Piece to the Puzzle

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I was beginning to feel a but defeated. I was beginning to question what I was seeing, my very sanity. Because no one else could see what I was telling them. A certain doctor we see had led me to know that they didn’t see what I was saying. How could I work with someone who didn’t believe me. I felt like screaming and shouting but I needed the doctor on my side. I went home sad, angry, and defeated. That day my courage did not roar. It cowered, it questioned, it considered believing what I had been told. But then I remembered that I am her mom. I know her best. I am her best advocate. I will not be silenced. I pushed for what I felt she needed and I’m glad I did.

Ever since AJ was diagnosed with Eosinophilic Esophagitis (EoE) she doesn’t eat much st all. It’s not that she doesn’t like the food but it seems that eating is painful and that she doesn’t have much room. When she wouldn’t take in enough formula I kept being told to make it taste better. I was telling anyone who would listen that she liked the formula but it was a volume problem. I was told that her last Gastric Emptying Scan(1.5 years ago) was fine. So I kept trying to push the formula. Finally we got into feeding therapy. They listened to everything I explained and said that it sounded like she had delayed gastric emptying. I got the doctor to order the test, but was warned that “these things don’t change quickly. I’m not expecting to see changes and if there are none we won’t repeat this”. But with the knowledge I had gained from our wonderful feeding therapists I felt supported.

So we reported to Nuclear medicine. She had to eat radioactive ☢️ oatmeal. Then she would lie completely still for 90 minutes while her stomach was imaged every five minutes. What a trooper. I have a very short attention span so it wasn’t easy but I can’t imagine what it was like for a 3 year old.

Burning the test I watched the red blob on the screen. The concentrated ball was the radioactive material in her stomach. Over time we should see it spread into her small intestine.

I went home with the images and used my limited knowledge to try to read them. I scoured the internet but I couldn’t make heads or tails of our images. It was Friday and I knew I’d be hearing back Monday so I tried to push it out of my mind.

Monday morning I brought the images to feeding therapy with the hopes of making some sense of it. Unfortunately they aren’t versed in reading the results which I assumed, but it was worth a try wasn’t it. Luckily we wouldn’t have to wait much longer. As we wrapped up the appointment and walked towards the scale I received THE CALL. Perfect timing.

THE VERDICT

Asher has delayed gastric emptying (gastroparesis). I do not know much about how it’s measured but I’ll explain what I understand from the report. According to the report for normal gastric emptying the “food” (radioactive material) should have a half life of LESS THAN 90 minutes. Asher’s was 143 minutes.

Validation

Obviously hearing that there is something else going on in your child’s GI system is tough to hear but this diagnosis explains a lot. It explains why she is always asking for food but can’t eat it (starving and full). Why she can eat a decent breakfast but struggled to eat the rest of the day. Why she’s full after two bites. And why she can’t drink more than 6 oz of formula. It helped me understand that what I was seeing was REAL.

Solution

At this time I’m waiting for confirmation from Cincinnati Children’s on the treatment. The proposed treatment plan is to try Erythromycin.  I’m nervous because she has a few antibiotic allergies and I myself and allergic to Erythromycin, BUT we must try.  So we’ll be going to the allergist to get her take on the idea, finishing the antibiotics she is currently on for a respiratory thing she had going on, and then we will be continuing this adventure.  Meanwhile the nurse practitioner at feeding therapy will be looking at her eating habits and diagnoses on a whole level and determining what’s the best eating pattern for Asher.

I will go on record AGAIN to say that I’m NOT a patient person. I like things that move quickly especially when it comes to making my kids feel better, BUT I will say that I have created a wonderful team of doctors from a few different specialties to look at my daughter  and steer me in the direction we need to go. We have a dedicated team both local in Cincinnati that are coming together to piece this 1000 piece puzzle, that is Asher, together.

Thank you for continuing to follow her journey and not being too frustrated that I haven’t blogged much about farming.  It is still going on, but it’s a very much behind the scenes project right now.  But it’s almost breeding time so stay tuned.

HAPPY FLOCKING!

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