Wednesday, April 23, 2014

EoE update.

long past due update on Jude's EoE needs to be done today because it will change tomorrow! Jude's last EGD was 12/26/2013. For the six months prior to that, we had eliminated

soy, wheat, eggs, dairy, nuts, corn, rice, potatoes, peas, beef, lentils, and mustard. 

We felt hopeful that that would be all it took to clear his esophagus of the eosinophils and have a perfect (or close to it!) EGD. That list included everything he tested even slightly allergic to in allergy testing, plus the lentils, which we just noticed he got hives every time he ate them. He had been nearly completely free of outward symptoms such as throwing up or hives.

"Quinoa bread"

This diet was difficult. Cooking was quite an adventure. We saw lots of quinoa, buckwheat, and millet. We would spend hours slowly searching each aisle of every health food store in town squinting our way through every ingredient list. Corn was my nemesis. Corn defiles everything. It was the most annoying thing. We couldn't have gluten-free anything. I thought about what a luxury it would be to be able to buy a gluten-free flour or mix. All gluten-free stuff has either potato, rice, or corn in it. We did get our hands on some black bean pasta that certain Whole Foods stores carry (100% black beans? Brand is "Simply Asian.") Not the stores here, though. My mom would bring them out from Las Vegas. We even tried some seaweed pasta. Not the biggest hit. It was clear and really slimy. (And zero calories. Zero everything. Weird.) 

The day of the EGD came. (It was originally scheduled for December 14 but had to be postponed because Jude got sick). We arrived at 7:00 and the EGD began at 10:00. Longest. Morning. Ever! They let us walk him into the room where the procedure would be done and meet everyone that would be doing the scope. They let him pick a stuffed animal from the shelf and he picked a little pink bunny. It was so nice to be able to go back with him but leaving him was just as hard. 

We waited anxiously in the waiting area. Dr Brigman walked out after a while and told us it was "not good." She explained that he had delayed gastric emptying (which we didn't know about), some residual reflux, and a still imperfect esophagus covered in plaques (looks like powdered sugar everywhere). His eosinophil count for his last EGD was 80. (It's like 80 million or something, i don't remember exactly). This EGD it was 25. Big improvement! But normal is zero. We met Jude in the recovery area. The anesthesia had NOT agreed with him and he was hysterically crying and inconsolable for what felt like forever. We were finally able to calm him down with a little juice and popsicles (that he really shouldn't have even had) once he finally gave in enough to try a little. Dr Brigman came around and talked to us again. We decided to give in and put him on all the medication we had been trying to avoid. We put him on a low dose of Erythromycin to help with the delayed gastric emptying, Pulmicort (a steroid to help heal the esophagus and keep the eosinophils out), and Miralax for his constipation. He was already on Nexium so we were continuing that but doubling the dosage from 10 mg to 20 mg. The Pulmicort is taken as a slurry. It is mixed with Splenda or powdered sugar and it coats the throat as it goes down.

We decided to eliminate his diet more, along with the medication, to heal his esophagus and get him better. It had been over a year that he had an unhealthy, damaged esophagus and we were willing to try anything. His diet was then changed to

chicken, turkey, fruit, vegetables (not peas), olive oil, sugar, salt, and pepper.

Nothing else. That has been his diet for the past four months with a huge emphasis on meeting his goal for his formula every day (where he is really getting all his nutrition). This diet has been a breeze. A store here (Sprouts) sells a rotisserie chicken that is just chicken and he really liked that for a while. It's usually a little chicken and a couple slices of fruit and that's his meal. I don't have to worry about feeding him nutritious or well-balanced meals because he gets all the nutrition he needs from his "milk." We had a follow-up appointment about a week after his EGD. That week he was taking in about 1/3 of his caloric nutrional needs every day. I was really beginning to worry about how he was going to maintain his health while not taking in nearly enough. The night before his follow-up appointment, Dan and I sat down and had a good long talk and were truly inspired to come up with a smokin' hot plan about how to get him to reach his goal. I'm going to go into it in case you or someone you know is in a similar situation and may benefit from hearing what we did. 

(Some grapefruit pomegranate chicken Dan came up with)

(Lunch was canned beets this day...)

This cake for his second birthday took hours and was truly a miracle!

He still talks about the "school bus bed."

Our doctor had told us he needed to be drinking 36 oz of his formula (Neocate Jr) per day. That was that. No tips, advice, or anything to help. That was a lot of fluid for a little guy. Not to mention a lot of the same strong flavor. At that point he was drinking about 15 oz a day. The goal seemed impossible. Up to that point we had been preparing the formula just as directed on the bottle. Add 4 oz of water to 4 scoops of formula. That equals 5 oz total. 

We sometimes would add a little less water so he would be able to drink it easier/faster. But then we found the measurement of "oz" to be an inaccurate guess. Shouldn't we be measuring the actual amount of formula ingested instead of the fluid volume? We did some calculations and came up with some figures. Jude's goal of 36 oz per day was equivalent to 1,071 calories. This many calories was contained in 29 scoops of Jude's Neocate. (One scoop equaled 37 calories.) Therefore, his daily goal of Neocate was 29 scoops. This goal was assuming he ate no regular food. Any regular food he ate was just bonus. That way we were shooting for the stars and able to keep a completely accurate count of how many calories he was ingesting and not have to count calories on food (which would be extremely difficult, time-consuming, frustrating, and inaccurate). (He never eats all of something. It's two bites of this and one of that.) 

We decided to start mixing his Neocate powder with anything and everything we could think of. Juices, soups, smoothies, applesauce, Popsicles, etc. We packed it in and made it much more concentrated than it said on the bottle.  We made it as concentrated as he would tolerate. We counted scoops and would record it every night in an Excel spreadsheet, as well as his weight every morning. 

This proved to truly be inspired, there was no way that little body could tolerate that much formula mixed only with water and that consistency. But by making it a little more concentrated and adding variety made it so he was able to take in a great deal more. Also, it says to not cook Neocate. We wanted to make him little cookie type things or have that option. I called Neocate and found out the reason it is not to be cooked is because it alters some of the vitamins and minerals. The caloric value is the same and (don't quote me on this) the main components of it (protein, carbohydrate, etc) are all the same. It was just some of the smaller vitamin and minerals that were altered. So if cooked infrequently, it was okay and the calories could still be counted. We made him little "pumpkin cookies" and things like that but not often because he didn't really like them and there was not a lot we could do to them to make them better as we had no flour of any kind (or anything else one would normally bake with).

Our plan worked! He started to get closer and closer to his goal every day. There have even been a few times he has even met and surpassed his goal! I figure if he is able to get an average of about 24 scoops per day, he gets the remaining few hundred calories he needs through food and juice. I'm satisfied if he reaches about 23 or 24 scoops. I mean, the Neocate is nutritionally complete. Meaning it contains everything he needs to survive and be healthy and is nutritionally balanced. How many two-year olds do you know meet their gold standard caloric goal for the day in a perfectly balanced and healthy manner? It is good. As time has gone on, he tolerates/drinks more and more. He is steadily gaining weight and so his growing body needs more. I am thankful evey day that he likes that Tropical flavored Neocate and usually drinks it pretty willingly. 

His average Neocate scoops for January was 21.6. For March is was 23.6. (February and April aren't working right now; I'll update later.) The trend is steadily increasing and getting closer to 29. We track his scoops, weight, bowel movements, and if he throws up. His weight on Day One of all this (1/12/14) was 24.4. Three months later on 4/21/14 it is 26.4. Pretty remarkable for a boy who can't eat hardly anything and has a very poor appetite. (Some people with EoE can't tolerate the amount of formula they need by mouth to stay healthy and they require feeding tubes. That is why I was so concerned at first and feel so grateful we came up with this plan and Jude is excelling (no pun intended) so much.)

Now to tonight. Jude had an appointment with his doctor on Monday and she was happy with his growth and how he appears to be doing. But the only way to really tell how he's doing is to get another EGD and obtain a biopsy for eosinophils. We are going in tomorrow morning at 7:00 and we are so excited and hopeful. I know I shouldn't get my hopes up but it's too late for that. I already have! Dan gave Jude  a blessing tonight and it was lovely and hopeful. We will be able to tell a little bit by how things look tomorrow immediately after the scope but we won't really know until the biopsy results come back, probably sometimes next week.

I truly feel blessed for Jude's health. It has been hard but it could be so much worse and I'm grateful that, overall, he is a happy, healthy, thriving child. I love him so, SO much and am so immensely grateful for our insurance, our doctors, nurses, dietitians, WIC (his formula alone would cost over $20,000/year), the stores that order in and carry Neocate just for Jude, the Neocate company itself, modern medicine, and all those who have helped him on his path to health. 

I am especially grateful to my Heavenly Father who watches over us and gives me strength to face each day with strength and stay positive as we try to get this precious little boy healthy.


("I hold baby, self, Mommy.")