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!

The Process: Getting to the Bottom of AJ’s Eosinophilic Disease

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Monday, September 17th

Let me just tell you that Cincinnati morning traffic is no joke. It look us 45 minutes to get to a hospital that is 9 minutes away. I’ve said it before and I’ll say it again, I AM A COUNTRY MOUSE! Luckily we had been warned by my dad about the traffic and we left in plenty of time.

The hospital itself is gorgeous. Its very colorful. In fact its color coordinated and alphabetized so that you know where to go. It’s the Disney Land of hospitals. I cannot say enough about how efficient and streamlined every step of our journey was. Nurses are willing to walk you from one appointment to another. They help you sign in and give you all sorts of tips. The attention to stopping the spread of germs was like nothing I’d seen before. Mandatory hand cleansing of patients before entering certain areas. No open tissue boxes sitting out in the OR and once a box is opened and a patient enters the room they either take that box of tissues with them or it’s trash. They had hand scrubbing wipes on every table.  It reminds me of that Hulu commercial where they tell you NEVER to fly first class because it’ll ruin coach for you forever…yeah, local hospitals just can’t compare.

Today was our biggest and longest day at the hospital. We had a 2 hour appointment in the GI clinic. I have never met with a GI doctor for this long. There was no rush or sense that I was being dramatic or a burden. They asked a ton of questions about everything from Asher’s birth to present and didn’t rush me when I rambled on with too many details. Then they allowed us time to just talk, explain our concerns and minute details that we thought may be important to her case. Lastly we were offered time to ask all of the questions that we wanted before signing her procedure consent. Naturally we apologized for asking so many questions and he doctor reassuringly said “No problem at all and it wasn’t that many”. Relief flooded me, these doctors understand the emotional component of this disease. Someone said to me, on the topic of me being nervous about Cincinnati not being different than my failed attempts at local hospitals,

“Cinci is going to teach you instead of you needing to teach them. You’re both going to be fine now. You’ve won your fight for your baby. Let yourself believe it.”

She was right. Whenever I go to the doctors I feel like I’m fighting a case. Like I need to prove to them what’s going on and teach them. In Cincinnati I never felt a shred of doubt. They not only believed me but they wanted to help my baby!

Endoscopy

After the GI clinic was completed we were walked down to check AJ in for her procedure. She was given coloring pages to scribble on and taken to a room to wait for her turn. For a kid that doesn’t eat much she was HANGRY. It was just after noon and she hadn’t had anything to eat or drink since 8:45 the night before.  We watched TV while anxiously waiting to get the show on the road.  The anesthesiologist came in to talk to us about the procedure and took me telling her that AJ has reactive airways very seriously.  This time the pre-treated her with a breathing treatment.  Shortly after the breathing treatment they would come to get AJ and wheel her to the operating room.  We got to go back with her and stay until they but her to sleep.

After she was asleep we were walked back to the waiting room.  This is always the hardest part.  I kept my eyes glued on the number monitor waiting to see her name go from pink (in OR) to green (in PACU).  Finally they called our name over the PA to talk with the doctor.  We were taken into a small room where the fellow and the doctor came in.  The first difference that I noticed between here and our local hospitals is that I got a big page full of pictures for my records. The doctor immediately put our mind at ease by telling us that Asher did great during the surgery.  They went over the pictures with us and explained what they saw.  They said that at the top of her esophagus there was some thickening and swelling that is consistent with eosinophilic disease.  They also mentioned that she had some polyps at the opening of her small intestine that they biopsied.  Overall however her esophagus looked pretty good and like it was healing as opposed to getting worse.  MUSIC TO OUR EARS.  Then the hardest part…we were sent back out to the waiting room to wait until Asher was in PACU and ready to be seen.

I’ll admit that when the 30 minute mark approached I was more than antsy.  It has NEVER taken this long for me to get back to her and my mind was reeling with all of the reasons that she wasn’t ready yet.  I had my ears straining to listen for codes being called.  Finally after what felt like two eternities, but was probably only about one eternity, they called out name over the PA.  I honestly don’t think I ever popped up and sprinted to a desk that fast in my life.  Usain Bolt who?  I nearly out paced the nurse to get to her bed, I don’t have these long legs for nothing.  Unfortunately I didn’t know where I was going.  typically I listen for her coughing but I didn’t hear anything.  And this is what I found when I got there…

Asher was peacefully sleeping.  No cough, no reactive airways, no screaming.  Just sweet angelic sleeping.  It would take over an hour before the nurse decided that it would be best if we woke her up.  From now on she will always be pre-treated before being put under that helped tremendously.

The rest of the week was full of appointments:

Bone density scan

Allergist:  There he made us aware that I probably have POTS and Ehlers-Danlos Syndrome and it makes a lot of sense that AJ may have EDS as well (it’s a dominant trait) since EOE tends to be common connection with it and that we should both look into that.

THE RESULTS:

AJ definitely has EOE, but right now it is in REMISSION (zero eosinophils).  YAY!!!  Which means that her treatment, a combination of PPI and elimination dieting, is working and healing her esophagus.  Right now the biggest issue that we are having is feeding.  We are currently on a waiting list to start feeding therapy here at home.  The dietician has determine that she currently is NOT able to take in all of her nutrition on her own orally and we’re trying a few things to change that.  They are concerned about why her airways are so reactive and why she is “croupy” so often so when we return in 3 months (YAY WE GET TO GO BACK AND CONTINUE TREATMENT) THREE specialists will be pooling their talents and doing a triple scope on her.   GI will being doing an endoscopy, ENT will be doing an upper airway scope, and pulmonology will be doing a bronchoscopy.  The big concern is to see if she has a cleft that’s causing her to aspirate food/drink or to see if the crouping is coming from a floppy airway.  The best part is that she gets to add corn, potato, and turkey back into her diet!!!  If the next scope is clean that means those foods were not the culprit.

BACK HOME: 

Asher has started school (pre-pre-k)

Now that we’re back home we tried the new medicine Periactin that we were given to try.  This medication was supposed to increase her appetite.  She took it for three days, while waiting for it to work she had an allergic reaction.  She was really flushed and itchy with hives and rashes.  We couldn’t be sure what caused the reaction but we were advised to stop the Periactin and go to our (local) GI and discuss feeding until we can get into feeding therapy.  So here at home we are limping along waiting.  I’m extremely pleased with the care that we received in Cincinnati and it is MORE than worth the trip.  I was careful not to assume that we would get some kind of magic fix, but I look forward to getting further into our treatment so that feeding isn’t so stressful each day.

BUT doctors’ appointments aren’t all we did while we were in Cincinnati check out some of our pictures: