"Quod me netrit me destruit."
What nourishes me also destroys me.

Tuesday, June 16, 2009

One Week Without Food

This is absolutely brilliant! Veronica, has a son named Luca who suffers from eosinophilic gastroenteritis. She decides to try living on his formula for a week to see what it is like. Here's her diary:


Sunday, June 14, 2009

Milestones and Setbacks

Zane turns three in just two days and we celebrated his birthday with a painting party. Every year I rack my brain trying to come up with party ideas that keep the kids busy the entire time. I want the focus of the party to be the activity itself instead of food - like most birthday parties. We allow Zane a "free day" on his birthdays, a day where he doesn't have to stick to his regimented mostly no food diet. A free day isn't totally free - he's simply allowed a couple of treats. On his birthday this year we allowed Zane to eat a plain chocolate bar (made of either 80 - 90% pure cocoa), one slice of "pizza" without cheese and a few bites of eggless chocolate cake. Doing this is pretty controversial amongst parents in the eos (short for eosinophil) community. To be honest, sometimes I'm not sure if I do the "free days" more for me or for Zane.

I do need a break from the day to day life of constantly mixing formula, making medicines, preparing special foods, counting ounces and converting them to calories, and going to doctor visits almost on a weekly basis. It's tedious and stressful at the same time. More importantly, I need a break (and so does Zane) from dealing with symptoms: the moodiness, the stomach pains, the vomiting, the leg cramps and hurting joints. So, why the free day if I need a break from his symptoms?? It's not such an easy answer. But, it makes Zane incredibly happy to eat something and it makes us incredibly happy just watching him eat something. For just one day, we can pretend that everything is normal I suppose. It isn't that I deal with the symptoms on a daily basis anymore. The symptoms are still a reality though; a part of our lives that we have to deal with even if it is occassionally.

And so Zane's birthday parties have become more than a celebration of the day of his birth for us. They've become huge milestone markers. We made it through another year! We're doing it! We can do it. Sometimes, I can't believe that we made it this far. I marvel at the fact that Zane is growing and is a happy boy despite the fact that he doesn't eat food. I'm proud of him for all that he has been through - the medical procedures, tests, doctors visits, two minor surgeries, all those sick days, and visits to the emergency room. And a part of me is proud of me for being able to manage it all for this long. I often have to remind myself to take it one day at a time because I know that this is going to be a life long struggle.

And there will be setbacks along the way . . . As there have been in the past. We went to Switzerland about a month ago now for Zane's biopsy after he had been on the pulmicort for a while. After Zane's biopsy the doctor came out feeling positive that Zane would scope clean. He told me that everything looked great and showed me pictures of what appeared to look like a normal and healthy esophagus. It was the best endoscopy that I've seen for Zane yet. The doctor proceeded to tell me that Zane would not need another endoscopy for quite some time and that we should see about reducing his dosage. (By the way, I was mistaken before about how much Zane was taking. His pulmicort was .03 mg / ml and his dosage was 5 ml three times a day.)

Then we returned to Dubai and Zane began vomiting and had to be hospitalized. I emailed the doctor telling him that his symptoms reminded me a lot of how Zane was before he was diagnosed in the beginning of 2008. Then he emailed me back:

Dear Mrs Mahmoud:

I was about to write you a mail to give you informations about the last endoscopy: as we already saw the white spots were significantly less visible, histology shows a reduction of eosinophils (Dr. X will give me the exact numbers). Signs of a chronic inflammation are visible, as we see in reflux esophagitis or EE. In summary: a slight decrease of activity of EE is described, in comparison to the last biopsy a reduction of inflammation in EE was seen. A complete resolution is not visible, despite oral steroids, but these findings are under increased oral intake of different food. Its seems that the actual doasge of Pulmicort is too low.

Concerning his actual vomiting: a relapse of EE caused by specific food ingredients is unfortunally possible. I would advice you to give Zane enough liquid (ORS), stop any tapioca ingredients and avoid any food exept Neocate for 3-5 days. At the same time increase Pulmicort to 2 x 10 ml (2x 300 µg Budenoside) for at least 3-6 months (as we saw improvement under this treatment).

I felt like I was getting whacked by a sledge hammer in the stomach. The disappointment that the steroids didn't work was pretty overwhelming and I fell into a pretty serious stupor for about two days. Immediately after reading that email I had to pick up Zane from school. I fell apart on the way and had to pull the car over because I was crying so hard.

I try not to get my hopes up but it still is a pretty hard blow when you work so hard for two months trying to make your kid well, do an invasive procedure only to find out that your efforts failed. I failed. I wonder if I did something wrong. If there possibly could have been some contamination or perhaps we introduced too many foods. There are always the "what ifs."

We will try one more time with the pulmicort and mix it the way they do back in the States with Splenda. The way Zane was taking it was pre-mixed pulmicort with a sugar syrup. If it doesn't work this time then we will have to go without the meds trying different types of foods one at a time again. Food trials are absolutely horrible though. Who wants to pick a poison? I just have to remember to take it one day at a time. We're doing ok so far, right?