Waiting is by far the hardest part of this journey.
We waited for seven days to hear the biopsy results from Maya’s Upper Endoscopy. In my heart I knew what the results would be and to be honest I was kind of hoping for a diagnosis. A diagnosis would give us a starting point rather than raising more questions. When Maya’s Nurse Practitioner called me to let me know what the results where I answered the phone with a giant lump in my throat. I was so very conflicted and felt terrible that I had been hoping for a definite answer.
The results did not surprise any of us.
Maya undoubtedly had Eosinophilic Esophagitus.
I probably freaked out our sweet Nurse Practitioner because I was so relieved and happy to have an answer. While she had me on the phone she told me what our first step was going to be. A medicinal slurry of sorts was our first line of treatment. It involved swallowed budesonide, ten packets of splenda, and pharmaceutical cherry syrup.
I seriously thought she was joking with me when she gave me the mixing instructions.
After I copied down everything and noted the things I’d have to find we talked about how long we’d have to be on this ridiculous slurry.
She told me we’d let Maya have three months with the slurry and then we’d re-scope to see what her allergic cell count was. If the count was worse or the same we’d have to try an elemental diet.
At this point I was not comfortable at all with the idea of an elemental diet. I didn’t want to take food away from my daughter who was struggling so much already. In my efforts to keep her from needing to go elemental I called and set up an appointment with her allergist so we could eliminate the offending foods and avoid the elemental diet.
We skin tested for everything we could think of that could be causing such a tremendous amount of reflux along with random outbreaks of hives.
Friends, just about everything we skin tested for came up positive. We tested for 27 foods. The only things that did not come up positive were beans, egg whites and shellfish oddly enough. She still had some fruits and veggies, but no nuts or meats whatsoever. We got those results the week of Christmas, 2010.
My world came crashing down.
I had just gone grocery shopping a few days prior and had already spent my weekly budget to get food for our family. It took everything I had to keep a straight, positive face and a sweet spirit for Maya. It’s so hard to put on that brave face when you really don’t know what on earth you’re going to do.
My help when I feel completely out of control and lost is to make lists. They help me see the problem at hand and the steps I can take to make it better.
I went straight for my notepad and started listing everything I could think of that Maya could eat. At this point she still had soy and we gained egg whites.
I made a quick little plan and priced everything to the best of my ability. I needed about twenty dollars to make do for a few days until our next grocery trip.
We just so happened to have a very large change jar that was almost full that we were saving for ‘just in case’. This was my just in case. I took my humble jar to a coin counter and got the money I needed to feed my daughter.
We then went to our local natural food store to gather the things we would need. I remember veggie burgers and gluten free buns being on our list. We got some egg whites, some shrimp, and plenty of rice, veggies and fruit to fill in the gaps.
After we got home I fed everyone a quick lunch and we headed out to take my brother who had been with us to help me handle everybody during the appointment back home.
I let the kids run and play while I talked to my mom. Really though, there wasn’t much talk. I looked at her, gave her a brief summation, and then proceeded to ugly cry into her shoulder.
The pain, the heartache, the impossible all pressed in and it felt like they were crushing me. I wanted with everything I had to make it stop hurting.
I hate crying.
The puffy red eyes, the smeared mascara, the embarrassment and the sad face simply don’t appeal to me. I hate the hurt that starts the tears. I generally go to mad so I don’t have to feel the hurt. (Yes, I know this isn’t the best way to handle the situation but I had to be strong that day) As I sobbed into her shoulder I kept saying “It’s not fair…It’s not fair!”.
I was so….angry.
I hated the hand my sweet little Maya had been given.
My amazingly awesome mom just held me, murmured “I know sweetie” and let me get some of my pain out.
After I came to a sniffling halt and cleaned up my streaky, bedraggled face I actually felt much better. Had I not been able to see my mom that day I think I very well could have crumbled spontaneously at some random point not conducive to crumbling.
I thank the Lord that she was my angel that day.
With some of the pressure relieved I was determined to make sure Maya would have plenty of tasty things to eat come hell or high water. I was not going to let a limited diet get in the way of her sweet spirit and our Christmas.
Found your blog on a happy accident looking for recipes for my son. He is now 22 months old our (Very short story) Screamed and projectile vomit from 24 hours old. Drs over and over told me colicbut put him on rice cereal in his bottle at 2 weeks old. At 1 months old when I insisted he had reflux and he needed meds. (over the course of the next 4 months 3 diff drugs endeing up on 40 mg of prilosec a day) at 2 months when I found a new pedi he agreed to send me to a GI. 3 months GI…. Calls him a sensitive kid no real diagnosis but puts him on Elecare. (almost new kid in a few days but still screaming 10-12 hours a day but better than 16-20) Had upper scope and flex sig done at 13 months. Looked clean and perfect and Eos were in “acceptable” range. Saw first allergist at 5 months old and he was awful said well sounds like EoE but we cant test for that till age 3-4 he did a few prick tests which had mixed results. At 6 months when we introduced foods he was hospitalized fot FTT (lost 2.5 pds in almost 2 weeks all) all sorts of tests run no positive results found GI puts him on elemental only diet and were with a few oz of a tube. New most wonderful Allergist comes into picture at 7 months. Allergy tests were pretty much null and void all skin, rast and patch came back neg. Allergist wants to do another set at 2.5-3 (unless something changes). So now we come to today 22 months old no real diagnosis EoE, EC and Fpies have all been thrown around. Still just being called a sensitive kid. Drinks 4 8oz Neocate splashes a day and has only Almonds, coconut, corn, apples, banana, oats, white and sweet potatoes. We make to much for help but not enough to feed our family of 4. Luckily he qualified for State Medicaid Peach care and they pay for his 5 cases of splash a month. I still feel lost I wish I had a diagnosis to go off of but he doesnt have enough symptoms to do anything just that foods cause him to get cranky and mean, sleep poorly, get refluxy, mucus poos, bloody skin on his bum when he poos. I hate it!!!!! I guess this post doesnt have a real point but Thank you for blogging
I’m glad you found this place. It’s great that he qualifies for help, those cases of splash are ridiculously expensive. Poor kiddo
. Have you had a second GI opinion? Maya scoped clean the first time. If you need anything please don’t hesitate to get in touch with me. Venting to a person that “gets it” and can actually help makes a world of difference 
I don’t think there’s anything worse than seeing your child sick or in pain and not having the ability to fix it. Certainly it’s the worst thing I’ve ever experienced, though not through food allergy. I’m learning so much from your site! I didn’t know that a person’s allergies could change back and forth. That must be so confusing!
How old was Maya at this point in the story?
I believe in the God of the Bible. I believe He knows all things and has a purpose for all things. My favorite person is Joseph, as in the Biblical Joseph with the coat of many colors. The one who saved all of Egypt and the Jewish people from famine… But not before enduring much hardship. It was in his hardship that he learned humbleness and how to trust God. I love this song, http://www.youtube.com/watch?v=v9LiGFXZYts thought I would share just in case you hadn’t heard it.
I’m so proud of you for sharing your story. You remind me of Paul with the thorn in his flesh. Your story is powerful because you are so clear about your weakness. And as you “boast” about your weakness you show us how God’s grace has been sufficient for you. That is such a powerful statement!
“That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” -2 Corinthians 12:10
I thank you for sharing your journey with your daughter with us all. I explain to my boys that we are all faced with challenges in our lives…it is how we face those challenges that will make us stronger and guide us through our journey of life. You inspire us all! I have presented you with an award on my site. Congradulations! Susan H. @ The Food Allergy Chronicles
just read all 6 parts of your story! wow! what an ordeal. yes, crying does help relieve the stress doesn’t it? it probably will again too! one of your jobs will be to help maya see this as something that will help here in the long run as well. she is not a victim. God has allowed this into her life for a reason that will result in good for her. hard to believe, but true. she has certainly seen a side of life by having treatments that many children don’t experience. she understands pain. she understands something of illness and the limitations from an illness. those are attributes that many never understand. she will know how to give compassion in ways others take years to understand. it will be neat to see how God uses her as she grows up after having these experiences.
Won’t it Martha? I look forward to the young woman she’s becoming. She’s so beautiful, inside and out. This journey is difficult, and it still hasn’t become any easier, but we are learning patience and perseverance to see this through to the end. Thank you for your encouraging words of wisdom
I always believed the soul picks its journey and seat in this life. This meaning, Maya picked you as her mother. God gave her to you because you are the one who will fight for her and help her through this journey. There is a reason for her journey and it is not meant for us to understand, but you are her angel here on earth. It is not always easy, I know, but you are doing an amazing job!
I’ve often thought that the Lord must have a whole lot in store for both of us given all that we’ve been through. She’s such an amazing little lady, I’m so blessed to be her mom.
Lindsey – what a trial you have been through. I’m so thankful that you finally got a diagnosis. I look forward to following you on the rest of the journey!
Off to wipe off my tears…good thing I’m not wearing mascara yet!
Thank you very much Johnlyn
This was a tough piece of the story to write. It gets better, I promise 