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. 

Belly Aches and Bribes

Age: 2 years 7 months

Weight: 33.5 pounds

We have about four weeks left until the end of Zane's pork food trial when he has his endoscopy in Switzerland. It started off really well with Zane asking for it all the time. There were a few days when he would scarf down four strips of bacon - which is a lot for Zane. Early satiety has always been a problem for Zane and so I've never seen him really eat a large portion of anything. I once went to visit a friend of mine and was astonished when I watched her two year old son eat 2 1/2 bowls of pasta. I could never get Zane to eat but a few bites of anything.

I think deep down I know that he is probably allergic to pork - but I'll do the endoscopy anyway. Is that wrong? Many people have told me that they can't believe that I am forcing my son to frequently undergo such a harsh procedure. But, for now, those endoscopies (or scopes) are all I have. I hold on to hope upon hope that my gut feeling is wrong and that Zane really isn't allergic and all those belly aches are due to the heavy dose of ibuprofen that he takes for his arthritis. Those belly aches are becoming more and more severe and much more frequently. Last week I took Zane out for a walk and he hunched down on the ground and winced in pain and grunted under his breath that his tummy was hurting him. I had to carry him home.

This month I started acupuncture therapy for Zane. It is another attempt to help him try to win an endoscopy so that we can find foods for him to eat a bit faster. I wasn't a believer in stuff like that previously. I thought it was nothing more than Eastern medicinal b.s. until I had it done myself while I was pregnant. My gyno told the acupuncturist when she wanted me to deliver and I did! On that very date (October 19th). So, I am hoping we can have the same accuracy with Zane. He's a real trooper about it as well. I bring our portable DVD player and there is a statue of a Chinese man with all his acupressure points marked and labeled. He sits next to it watching Buzz Lightyear with lasers strapped all over him. I'll try almost anything to help my son get better at this point. I've even considered taking him to see the Pope in Rome.

And I have been trying damn near everything . . . For months now I've been trying to get Zane to drink his Elecare from a cup to no avail. He simply will not do it and will only drink it from his bottle. My big fear is that if I take the bottle away he will stop drinking and I will have to resort to a feeding tube - one of my big fears. I purchased a few cases of Neocate's E028 Splash but Zane wouldn't even take a sip from the juice box it comes in. So, I took full advantage of the holiday season and told him that Santa and the bottle ferry were watching. I told him that they would bring him a present for every E028 box that he drinks. I went out and purchased a plethora of gifts, had them wrapped and placed them where he could see them but not reach them. I pretended to speak to Santa and the Ferry on the phone and out in the front yard (the neighbors probably think I'm nuts talking to myself out there). I would tell Santa and the Ferry that Zane would drink his juice box - "I promise." It worked. He now drinks about 3 - 4 of those boxes a day and we allow him his bottle of Elecare right before he naps and goes to bed for the evening. What did Zane get for drinking those boxes of E028 Splash? A razor scooter, Mater the Tow Truck Car, Lighting McQueen lego set, Sally the Sports Car car, a puzzle and some other stuff.

Yup. I went there. I totally resorted to bribery of the worst kind. I will unashamedly admit it too. I'm desperate, people. I need Zane to be able to drink this formula. This disease is hard enough as it is to deal with on a daily basis. I sometimes fear that the feeding tube will be the one thing that puts me over the edge. It just might break me. I'm not as strong as my son is to have to endure a life without food and a barrage of medical procedures. He is my inspiration though and I have to remember to be tough for him.

Please keep your fingers crossed that Zane will pass his pork food trial. Think: No eosinophils. No eosinophils.

Be well.