So What CAN He Eat?

I was very naive about the severity and nature of this disease back when I posted a few months ago. I was also naive in thinking that the severity of the disease was measured by the frequency of Zane's vomiting. Since Zane was put on the restricted diet eliminating rice, wheat, gluten, nuts, seeds, soy, beef, lamb, fish, shellfish, eggs and dairy products he went from vomiting all day long to only about once a week. So, I thought he was improving. His appetite also increased but still wasn't where it should be. But, because he was eating I didn't question it too much. We were concerned about his inability to gain weight though. Most doctors kept brushing that aside as a non-issue because Zane was 'seemingly' so healthy. He is always so active - especially so when we went to a doctor appointment. The pediatric gastroenterologist in Dubai told me that Zane's activity was not indicative of a child who wasn't meeting his daily caloric needs.

However, right before we left Dubai Zane began vomiting a bit more and then stopped eating food altogether. He never even asked for a bite to eat or mentioned food at all. I would leave food out for him and sometimes he would go days without a single bite of solid food. I began to suspect that he had additional food allergies and thought the likely offenders were corn, potatos and garbanzo beans. I allowed him his Elecare only diet since he actually took in more calories on that then when we combined his Elecare intake with regular food. He would occassionally eat a few bites of regular food and then stop and say that he didn't want to eat anymore. I didn't realize that early sateity had set in. Early or premature sateity is a condition whereby the stomach sends a message to the brain telling the brain that it is 'full' when it really isn't. It is the body's way of protecting itself when harmful or offensive foods have entered the system so that the person will stop eating. This in turn leads to a 'failure to thrive' as doctors call it where kids fail to gain weight and stop growing altogether. Up until Zane stopped eating before our trip to NYC he had not gained any weight for a year. He was wearing the same clothing he did when he was one year old.

Then we arrived in New York . . . Allergy testing revealed that Zane is allergic to all environmental allergens with the exception of dogs, cockroaches and dust. A week later blood work revealed Zane is allergic to all foods that he has been exposed to thus far. This includes: chicken, turkey, pork, apples, bananas, peas, corn, potatos, oat, barely, watermelon, grapes, carrots, and tomatos. Mind you, this list of food is not exhaustive. It is only what we tested him for. When you combine this with rice, wheat, gluten, nuts, seeds, soy, beef, lamb, fish, shellfish, eggs and dairy products there really isn't much else left. He also can not eat any acidic foods because he developed severe acid reflux as a result of all his vomiting over the past year.

His biopsy on Aug 11th revealed that the condition of his esophagus is worsening. A healthy esophagus looks pinkish and shiney and smooth. Zane has the classic forrowing known amongst kids who suffer from EE. He can not tolerate foods and the doctor recommends that he be taken off of all foods and then only introduce one food at a time with biopsies conducted every 6 - 8 weeks to determine if the eosinophils have returned. If so, then we know that he is definitely allergic to that food and we try again with repeated endoscopies until we come up with a list of foods that he is not allergic to. Doctors have told us that this process could take as long as 2 - 3 years. So, the search is on for non-offensive foods for Zane and we are starting with corn.

We can not know for sure how bad Zane's case is until the pathology report from his Aug 11th biopsy is recieved and we have an exact eosinophilic count. But, I fear the number will be high. The doctor said that the eosinophils appeared 'dense.' I certainly expected some change in his esophagus but Mohamed and I were shocked that the change was as dramatic as it was in only five months.

When I came to New York City last February the doctors told me that his case was so mild that they weren't 100% sure he did have an eosinophilic disorder. Today, however, they told us that his case is now moderate and he definitely has a full blown case of the disease. But, I knew he had the disease all along. Nothing else made sense and all his other tests were negative when he tested for other allergic diseases and cystic fibrosis.

We still are fortunate in that Zane is willing to drink his Elecare - even now that he requires 30 - 35 ounces a day of it. Most kids can not tolerate the foul taste. Mohamed and I can barely tolerate the smell. Kids who can not drink it must be placed on feeding tubes. It's my biggest fear. I really don't want to have to feed my son with a feeding tube through his nose or surgically implanted in his side into his stomach. But, considering all the horrible implications of not eating - feeding tubes seem like a positive alternative.

I've gone through the whole gammut of feelings on this. I've cried about it. I've even laughed at time at how ridiculous this disease is. For example, kids with eosinophilic disorders have certain "safe foods." Ready for this one? I can freely feed my son all the water, sugar, salt, maple syrup, vinegar, and dum dum lollipops he wants. Great. Now I can rest my head with ease. What the hell am I supposed to do with that stuff? The lollipops have come in handy to satisfy Zane's desire for real 'taste.' I can't even begin to tell you how appreciative I am for dum dum lollipops and rock candy (the clear kind that is basically only water and sugar). I'm trying to get creative with maple syrup by making "juice" with it by mixing it with water. I may possibly try making slushies with the stuff by mixing it with crushed ice. I am also incredibly appreciative for Elecare. It is keeping my son alive and well.

Needless to say, we no longer have family meals. Breakfast, lunch and dinner times have turned into a multi-faceted sting operation. One of us watches Zane and keeps him distracted while the other hides and shovels food down really fast before Zane finds us and throws a tantrum because he can't have any. No one understands the severity of his allergies and the impact that this has had on all of our lives. I told family not to throw a birthday party for Mohamed and I this year because Zane can't have any of the food - especially cake. My mother replies, "Oh. Ok. I can make cupcakes instead." Thanks for the help, mom. Zane sure as hell wouldn't want to eat those. Why didn't I think of that?

Going food shopping is an exercise in emotional torture and futility. I slowly stroll down food isles to see if there is anything at all that Zane can eat. By the end of it I am usually either pissed off or in tears. I am suddenly racked with guilt when I can eat - because I know that he can't. In all likelihood he will never be able to have a full diet. Doctors want to find at least one grain and one protein before we can take him off of his Elecare.

Want to know a real irony? We are Muslims who are not supposed to eat pork. What is usually the one and only meat that kids with eosinophilic disoders can tolerate? Yup. Pork. Which is totally fine by me. I told my husband that I would gladly take one for the team on this. I'll go to hell in a handbasket in a heartbeat with the biggest grin on my face if he is able to have a big fat juicy pork roast and not get sick from it. I want him to love it and ask for it again and again and again.

Signing off from Dubai,

Nancy

PS. I will add pics of our trip to Italy and NYC soon. I'm still seriously jet lagged.PS. Here is a good link on the basics of EE, as it is called. http://www.childrensmemorial.org/cme/online/article.asp?articleID=125

(originally posted on August 22, 2008)

So Where Do We Begin?

It's been a while since I last wrote. However, I assure you that I have valid excuses for not updating all of you on our latest and greatest. So, where do we begin?We moved the end of January / beginning of February from our beach front flat to a massive villa in Umm Suquiem 2 / Al Manara area of Dubai.

I know what all of our friends and family back in the States are thinking . . . "What? Mohamed and Nancy moved?! No way. That's not like them." But, alas, it is true. We lucked out and found a bigger place which is much much cheaper and so, in Dubai, you don't pass up prime opportunities like that even if you do have full sea views.Next, Zane's health began to deteriorate very quickly and he fell very ill. We have been taking him to doctors for a year now trying to figure out what is wrong with him. It got so bad that he was vomiting every day all day long and had not put any weight on over the last year since his first birthday. We took him to the emergency room here one night only to be told that health care here in Dubai is so basic that they can not perform the tests necessary on him to help or treat him. Doctors suggested that we take Zane to Europe or the States for medical testing and that is exactly what we did for the month of February.

We were there for over a month and finally figured out what is wrong with Zane. He has severe and multiple food allergies which went undiagnosed for so long that he developed a rare and chronic allergic disease called Eosinophilic Esophagitis (also known as EE). Zane is allergic to rice, wheat, gluten, beef, lamb, fish, shellfish, soy, eggs, dairy products, nuts, seeds and certain fruits. Every time he ate something that contained any of those ingredients, the eosinophils or white blood cells in his body, would grow in his esophagus and attack the food coming down his throat causing him to vomit.

Those eosinophils have now taken on a life on their own. In normal healthy people, eosinophils act to attack only foreign substances that are harmful to your body. In Zane's case, he has a disorder where the eosinophils mistakenly attack food because his body is allergic to it - but sometimes they also just "attack." Now, they won't go away and even when he doesn't eat food he is allergic to he vomits. His esophagus has suffered some damage and scarring as a result creating a severe acid reflux problem for him as well. He must undergo frequent steroid treatments to keep the eosinophils in his body at bay and allow him to be able to eat and drink without a problem. He has had to be hospitalized a few times because of his condition as well which was hard on him. But, the vomiting has subsided considerably and we are now focusing on helping Zane to heal his esophagus and gain weight.

We are fortunate because many children with Zane's allergic disease, EE, are never able to eat again and must be fed special formula through a feeding tube to keep them alive and prevent malnutrition. Zane is able to eat and drink on his own and his "numbers" of Ige related allergies and eosinophils are not too bad. Doctors believe that Zane will outgrow some of his food allergies but not all, unfortunately. But, the EE may be here to stay for quite some time.

Ilhumdullah, Zane is still the happiest little boy ever. His smile lights up a room. I often tell people that if anyone should have to get a disease like this that perhaps it is best that it is someone like Zane because he is resilient and happy anyway - even when he isn't able to keep down any food or liquids. I still feel blessed that God gave me a wonderful little boy and I would rather spend a bad day with Zane than a good day by myself.

But, please say a prayer for my little boy that he outgrows all his food allergies and that the eosinophilic disorder goes into "remission" (if there is such a thing for EE). Zane drinks a special formula called Elecare that is hypo-allergenic yet contains all the vitamins, nutrients and minerals that he needs to prevent malnutrition and encourage growth. The problem with the stuff is that it isn't very filling and it is extremely expensive. But, we have to do whatever it takes to keep Zane healthy. He also needs to undergo frequent biopsies to measure his eosinophils and see if his esophagus is healing. He may also need to undergo more allergy testing to determine if there is anything else he is allergic to -- doctors believe that he is. It hasn't been an easy ride but God meant for Zane to fight this fight for a reason. Mohamed and I are just trying to be there to support, guide and help him all we can when he is most sick.

Finally, so I am not a total and complete killjoy over that last bit of news . . . Mohamed, Zane and I are happy to announce that we are expecting another addition to our family. Baby #2 is due on November 1, 2008 and after our last ultrasound today we learned that so far (God willing) we have a healthy and well developing baby.

All the best from Dubai,
Nancy

(originally posted April 18, 2008)