Tuesday, October 7, 2014

BIG EoE update!!

Well, this post is long overdue. But I'm excited to be writing it now and just want to spill everything out as thoroughly and clearly as I can. Everything is


and I am grateful, humbled, overwhelmed, anxious, and pretty much everything else I could be. But this isn't about me... it's about...

JUDE! I just glanced at my last post (and an email I sent out to family and friends) so I will update from there.

(For those of you who did not get the email, I will attach it here because it's a good synopsis of where we were:

Hello dear friends and family! 

As you all know, we are battling a nasty allergic autoimmune disease with Jude (Eosinophilic Esophagitis). I think you all know bits and pieces, but I want to share an update and ask for your help.

His last EGD (or "scope") was PERFECT. Thank you for all your encouragement and prayers! The only problem is, he was on a steroid prior to that EGD, which heals the erosive esophagitis and inflammation in his throat. (We had been trying to avoid it up to that point, as it's kind of like "cheating." He could still be eating "unsafe" foods but look perfectly clear due to the steroid. But the steroid is not healthy to be on long-term [or even short-term, really]). Although his diet was drastically more limited, it had been over a year that his throat was damaged and we were desperate for healing. 

Well, he has been off the steroid for several months now. So, this next EGD is the true test. Right now his diet consists of all fruits, all vegetables, chicken, turkey, olive oil, and sugar. If this next EGD appears clear and the biopsy returns no eosinophils (white blood cells that shouldn't be there at all) then we KNOW all those foods are safe. That would be an incredibly HUGE step as it would give us a large foundation to be the basis of his diet and start adding foods to. (It can sometimes take YEARS for these kids to get this many foods on their "safe" list.)

We have felt so guided in this journey and are making lots of important decisions through the guidance of the Spirit. We have learned that Heavenly Father truly guides us to receive revelation and inspiration to help our children and puts people in our lives that we need.

Last EGD, I had some friends and family pray and fast in his behalf. I felt the power and support in that but believe there is so much morepower that can be utilized. Much has happened since then and I have witnessed first-hand a literal healing through faith, prayers, and the power of the priesthood. Healings occurred in the times of Jesus. Healings occurred in the times of the pioneers. And now I truly know that healings occur today, and just as miraculously. I am fervently asking you all to join me with your faith and call upon the powers of heaven and pray for Jude...that he will heal, that his scope will be clear, and that we will be able to move forward. I have faith in your faith. I believe that God is ready and willing to bless us, but many times he is waiting for us to ask. Please pray for this precious little child. Please fast for him or include him in your fasts. I know that the priesthood is real and so are the desperate pleas of a mother. 

I so appreciate all your love and support. We are excited to move forward and form our army of faith for our truly angelic little child that fills our days with so much joy. We have an appointment with his gastroenterologist on September 20th and will schedule the EGD for shortly after that. I will let you all know the exact date when I find out.

We truly love you all and are so blessed to have you in our lives. Thank you for standing behind us!!!!

Rachael (and Dan, Jude, and Abraham)

Moving on...

A couple months ago, we began introducing our "new foods," which were ginger, cilantro, basil, garlic, and hemp hearts. I have continued to study different approaches for healing through diet, spoken with some other EoE moms, and just been constantly praying and pondering and trying to figure out what to do. I started to get nervous about his next EGD. He had an appointment with Dr. Brigman on September 22 and an EGD to be done later that week. A month or so before the appointment, I decided to take him off all his new foods because I was afraid his EGD would not be clear (because he had been given the steroid the last time it was clear, which is kind of like cheating, in order to heal). I thought the risk was too high to have all the foods he was already eating, be off the steroid, and introduce the new foods previously listed.

If the EGD was not clear, we would be in such a hard place. What is causing the eosinophilic reaction?! Is it the "normal" diet he has been on, the lack of steroid, or the "new foods?!" I felt there were too many unknowns and answering these questions would be extremely difficult. I thought that if he was just on his original diet of turkey, chicken, fruits, vegetables, olive oil, sugar, and salt and pepper, then that would be a really strong foundation and if we could just KNOW that he was 100% clear on those, that would be such an incredible base to move forward with.

So, the morning of the appointment came. I had butterflies in my stomach like I was getting ready for a big date or a job interview. Soo much had changed. Last time I had spoken with Dr. Brigman, we had agreed to introduce beans, potatoes, and rice.

NOW... I had completely shot that idea down and decided to introduce other, weird-ish foods. (Some of which he had not even been allergy tested for, because they don't normally test for those foods). Then I just took him off all new foods altogether. I had called her (Jude's gastroenterologist) a few months back telling her I was considering the GAPS diet and asked her for her opinion. She said it's "not appropriate" and meant for children with Autism. Although I did not have her approval, we have moved forward and are still committed to doing the GAPS diet. I had taken Jude off his Nexium without her approval. I researched the drug and did not feel good about keeping him on it. (If you are interested in the details of this, let me know and we can talk about it). I also completely weaned him off his prescribed Milk of Magnesia and Miralax to help with his "constipation" issues. I had also decided to wean Jude off of his Neocate formula. This has been his main source of nutrition for over a year and a major crutch for me not having to worry so much about him getting balanced nutrition through food. Oftentimes he would just drink a cup of Neocate and barely eat a thing for a meal.

So, I was nervous. I felt like I was defying her wishes and paving my own way and I was worried about how I would be able to explain myself. I felt confident and sure in the decisions we had made and the way we were moving forward, but if it came down to any sort of discussion where she was on the other side, I would not be able to defend myself against a physician who really knew her stuff. I prayed that I would be able to express myself and that we would be able to have a clear conversation. I prayed fervently that I would know what I was supposed to do to help Jude. I wasn't quite sure what path that was and I was desperate to get some answers and clarity. I oftentimes feel like I am Jude's gastroenterologist, dietitian, and allergist because I am the one really defining his plan of care, choosing the foods we will introduce, monitoring his symptoms and adjusting his diet as needed, and even performing mini allergy skin tests at home. We see the doctors every few months and they pretty much just agree with what I say and tell me to keep on going. They don't have a lot of "answers" because everyone approaches this condition so differently. It has been extremely overwhelming for me to feel the weight of having to care for my child and feel like his health is dependent on my efforts. I have in many ways put this great load upon the Lord and asked him to help me because it's obvious I can't do it on my own.

I prayed that whatever the outcome was, that I would feel sure about the path we were supposed to take. We waited in the doctor's office and watched the construction site from the fifth floor window. We studied the picture of the GI pathway on the back of the door. Dr. Brigman walked in and the conversation began. I just kind of word-vomited everything we had/had not been doing. I told her everything I just told you and also about how well he is doing clinically. He had only thrown up once in the last several months (and that was driving on a windy road), he hadn't complained of his throat or stomach hurting in over a month, he has a good appetite, and he has had a normal bowel movement every day for the past several weeks completely on his own. He was doing incredibly well.

She looked down at her paper and then looked up at me, "And he's not even on the Nexium?!"

"No... I said."

To which she replied, "I have chills. I'm speechless. I am so impressed by everything you've done."

Boom. Fireworks.

As we continued to talk, she said several times how proud she was of us and how excited and impressed she is with how well he is doing. As I continued to explain to her about our plan for Jude, she kept saying, "I feel so good about this."

I'm pretty sure at one point I saw tears in her eyes. I told her how I got nervous and took him off his new foods. We talked about how he could, clinically, he looks perfect and how he is on an extremely low-risk diet with no risky foods and we stick to it 100% and never fudge. She said that she did not share my same concerns about the steroid "cheating" on his healing and healing him falsely. She said that the steroid just "seals the deal" and if he was ingesting anything that was irritating to him, he would not have had a COMPLETELY PERFECT scope like he did. She said that she is as fairly certain (as much as she can be) that he is still perfect on the inside and that it was not necessary to do a scope right now and put him through that "just to be sure." She really felt that he was still doing very well internally and it would be prudent for us to introduce a few new foods, monitor him closely for any reactions, and then scope him again  in the Spring, a year from his previous scope.

Hello! Game changer.

It took me a little while to absorb it all, but as I mentioned, I have been very prayerful about all this and prayed specifically that the doctor's appointment would go well and I would feel good about a decision and be able to move forward.

I felt good about this. And heaven knows she did. She had tears in her eyes for goodness sakes. I truly feel that my prayers were answered through her. Heavenly Father knew that I needed that confirmation. I can do all the studying I want and feel good about things myself and have the support of my family and friends, but I still just really needed that support from his doctor. Someone I trust. I needed an experienced gastroenterologist to say, YES, PUT HIM ON THE GAPS DIET. YES, INTRODUCE HEMP HEARTS AND FERMENTED COD LIVER OIL. YES, KEEP HIM OFF HIS NEXIUM. YES, WEAN HIM OFF HIS FORMULA. (All these decisions that she previously did not support).

I truly believe that she was touched by the Spirit to "feel so good" about all this so that she could support me and I could feel confident enough to move forward.

So, no EGD right now. We are introducing hemp hearts first because as we are weaning off his Neocate he is lacking a lot of nutrition and he needs that nutritious "milk."

That same week, a couple other things happened that reinforced to me that this decision was right. People were placed in my path as little angels to help me along the way. I could not and can not deny that my prayers were very clearly answered and that we are moving forward in the right direction. That feels good!

There is a lot more I want to share and a lot that has happened since all this, but that is for another day! My prayers were answered. Your prayers in my behalf were felt and appreciated and answered.

Thank you.

We are excited to move forward and I will try to post again soon with more updates!