Back to Where We Started

The same night as my last post, Zane's doctor in New York called and told us the fantastic news:  "Zane's eos count was ZERO."  She said to continue feeding him all foods avoiding certain gastro-intestinal irritants (like pepper, garlic and cinnamon) and don't go too heavy on the main EE triggers (wheat, gluten, nuts, seeds, soy, eggs, dairy, beef, lamb, fish (and shellfish).  She said that as long as he isn't symptomatic we can do a biopsy in about 5 - 6 months and if that is clean than we can do a biopsy once a year.  She said that since he is on the polmicort that we will need to track his height and weight every 3 months to make sure he is following his growth curve.  It is the only way to monitor whether or not the steroids are being systematically absorbed other than an ACTH Stimulation Test (which sounded pretty bad).

I can literally tell you that I was living a high.  Crack couldn't have delivered the same sublime happiness I felt knowing that my son was at a zero eos count and enjoying foods.  Although, the one caveat issued to us by Zane's doctor did creap in the back of my mind:  "We don't know how long his remission will last."  I tried to ignore the background worrying noise and just espouse an "enjoy it while it lasts" mentality.  That's kinda hard to do sometimes.

I did notice that Zane still had stomach aches (which the doctor suggested he may be faking).  He's not!  I also noticed that Zane was slowly eating less and less food.  He was getting pickier and pickier about his meals.  I wasn't sure if the novelty of eating wore off already and his toddler instincts were picking back up where they were supposed to be OR that he was beginning to get sick again.  I also noticed that he began coughing again at night on occassions which concerned me.  But, I blew it off.

Until finally last Thursday Zane began vomiting again.  Today he vomited everytime he ate something.  He asked me, "Mommy, please don't make me eat food anymore."  I said, "Fine.  But, then you have to start drinking more formula again."  He ignored me.  I was proud (only the way an eos mom can be) because he did throw up in the bucket or toilet a few times as opposed to the floor or carpet.

Now, it appears we are back on an elemental diet only because Zane won't eat anymore.  When he is feeling better we can begin to reintroduce a couple of foods back into his diet.  We are thinking possibly doing 3 - 5 foods gradually along with his formula intake.  To be honest, I am happy with just 3 - 5 foods as long as he is eating SOMETHING and getting a chance to socialize with us and others without food becoming taboo.  It looks as though we've come full circle.

What a rollercoaster ride this has been though.  The highs are really high.  And the lows . . .  well I'm sure you can imagine the heartbreak we feel that our little boy can't eat like everyone else can.  But, he is such a trooper and even after he vomits he still has the biggest smile on his face.  And his eyes just light up the room for me.  He is my biggest hero and my biggest source of inspiration.  I've learned so much from him and from this disease and even though I wouldn't wish this on anyone, I know that everything happens for a reason.  I'll accept whatever gets thrown my way and deal with it the best that I can.  I still feel incredibly lucky that I am his mother. 

Steroids: The Ultimate Wonder Drug

Prior to Zane's diagnosis with EE, we occassionally had to use steroids on him for what we thought were severe sinus infections. Once we used them, it was like the parting of the Red Sea. Suddenly, Zane would be able to eat again, he had no stomach pains, his appetite was impressive and he stopped vomiting. At the time, I was completely and totally ignorant of the side effects of systematic steroid usage. Or maybe I really wasn't that ignorant? Maybe I was just desperate?

Zane's vomiting fits were absolutely horrible and they went on endlessly. I wanted to give him a reprieve from it all and just be able to eat and lead a normal life. His vomiting fits were so bad that someone had to sit in the back seat of the car with him at all times (even for short 2 minute drives) because it was almost a certainty that he would begin vomiting. I thought twice about leaving the house with him. He couldn't sleep because he would wake up several times in the middle of the night vomiting. He had exocist-style projectile vomit that was totally unpredictable and frequent. He vomited once on the second floor of our house and it flew over the banister, covered the walls, flew down the stairs and landed on the first floor. Imagine that twenty to thirty times a day.

Once Zane was diagnosed though and I became more familiar (and naively less desperate) with the effects of systematic steroids I decided to go this quest naturally though restricting Zane's diet. He went from vomiting twenty to thirty times a day to once a week. I was thrilled. But, gradually it increased in frequency until we were forced to eliminate all foods from Zane's diet and begin our food trials.

Since last summer, we have only been able to successfully complete one food trial: corn. After that, every food we have tried makes Zane vomit at some point or another until he is back to vomiting almost daily. He was beginning to become desperate to eat and began developing behavioural issues. He would beg total strangers for food at the mall in the most pathetic way. People would look at me, not understanding, and think that I was intentionally starving my own child. He began getting into fights at the park if he saw other kids with food. And when he did get his hands on food he would eat the way you see in those UN videos when you see starving kids in some far off African country protectively coddling their bowl of rice and scarfing it down as fast as possible. He would beg for food and when I told him no he kept saying, "But, Mommy, I'll be a good boy. I'm sorry."

I couldn't take it emotionally at times. It was hard. It was really hard. The doctor in Switzerland realized that Zane was having a hard time and suggested that we put him on a low dose steroid that is not systematically absorbed by his body. It is called Polmicort and it is .03 mg per 5 ml. Zane is currently on 10 ml but we will reduce it to 5 ml beginning tomorrow.

Zane has been off of school for two weeks now and has been on the drug for a total of four weeks. Today, his teacher's first day back from holiday she noticed the dramatic difference in Zane. She commented that he has an appetite and that he eats food without gagging. He hasn't thrown up once since he began his course of treatment. It's amazing. We have begun to allow Zane to sit at the dining table to eat and he was over the moon with happiness. He now stays the full day at nursery and sits down with the other children and eats lunch with them. He only eats four foods: rice, potatos, turkey and corn. But, it feels like he's having a feast. Hopefully his scope will be clean in May when we go to Switzerland. Say a prayer, keep your fingers crossed, send good energy and positive thoughts his way if you can. It would be much appreciated.