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. 

What a Difference a Year Makes

We arrived back from the States two days ago and what a difference a year makes. This time last year the doctors told us that Zane couldn't eat at all and we struggled on insanely restrictive food trials with formula being his sole source of nutrition. This time last year I returned from the States utterly depressed. All you had to do was ask me about Zane and I would fall to pieces and fill up with tears.

And now? Zane is eating. I can't believe it myself but it appears that the polmicort may be working. We haven't officially gotten the final results from Zane's biopsy taken on August 10th yet but it does appear to be working this time. It was so strange when the doctor said so nonchalantly, "Have you tried feeding him ice cream?" I said, "No. Why?" She was like, "Why not?" As if I was beligerently withholding food from my deprived son for no reason.

She explained to me that we have to see what happens to Zane while he is on a full diet while taking the polmicort. Mind you, this does not mean that Zane can eat anything in sight. He still does have EE. He is not cured by any measure of the imagination. Maybe I shouldn't ask for a cure anymore. Maybe I should just be happy with him eating. Although he is taking the polimicort he is still symptomatic. He gets the stomach pains, leg cramps and joint pains. Sometimes the stomach aches are pretty bad. Sometimes they aren't. The doctor told me that Zane may have to learn to deal with "pain management," which for some kids with EE (especially those on feeding tubes) pain can be really horribly bad.

Zane is still not permitted to eat any food that he has an IgE mediated allergy to. For those not familiar with "EE speak" that means he can't have any food that he gets the traditional allergic reactions from which would include: rashes, vomiting, itchey mouth and / or throat, stomach aches, diarhea, etc. Zane reacts differently to different foods but his traditional IgE mediated allergies are eggs, nuts, fish, shellfish, lentils, certain exoctic fruits and smarties candies (not the chocolates but those chalky like circular small candies). Smarties candies used to be a "free food" for him because they aren't more than sugar and food coloring but he suddenly reacted to them one day while we were in New York City so he's since stopped eating those.

Zane was over the moon with joy when he heard the doctor say that he can have ice cream. He immediately started screaming, "Mommy, I want ice cream. I want ice cream." A part of me was bursting with excitement myself to have the go ahead from the doctor. I couldn't wait to get outside and find some ice cream to feed him. Then there is another part of me that is terrified of this "food experiment." It is simply another trial and if the next biopsy shows something bad then food will be taken away from Zane. It was easier putting Zane on a formula only (or elemental) diet last year because he was barely exposed to food. Since all he was doing was vomiting and reacting to most of what I fed him he has never really had food before August 10th, 2009. But, taking food away from a kid who is used to eating is a whole different type of struggle. The polmicort gives him a false sense of security in a way. He no longer vomits the second he eats food. The drug helps to suppress many of his reactions to foods. So, he sometimes thinks that he is no longer "sick" himself. He does still vomit occassionally and we have to go to the emergency room to get it under control but he is no longer vomiting everyday all day and night long. That, thankfully, has stopped. But, my big fear remains: What if we have to take the food away again? Can Zane (and us) manage this time around without food?

The other rationale the doctor had for allowing Zane to eat was because Zane was developing an eating disorder. By that I mean that he was sneaking foods to eat. I was very good about locking up my fridge and not putting food out. We would keep Zane locked up upstairs where there is never any food around and we would never eat around him. So, if we were out and about and Zane found food on the street (literally) he would pick it up and eat it. He didn't hesitate to go through the trash. Sometimes he would go up to complete and total strangers and either take their food away from them for beg them for food (which was often worse). I've seen my son attempt to wrestle another little boy to the ground for some of his popcorn at the park. On the bus in NYC Zane found a bad of half eaten chips and put one of those in his mouth and ate it. And then there is even worse than garbage picking and begging . . . Kids with EE will often eat anything - even if it isn't food - simply to satisfy the human desire for oral consumption of food. Zane has eaten bird feathers, cigarette butts, leaves, paper, sand (repeatedly since we live in the desert and it is so abundant here), wax and playdough to name a few. He has done this in public which leaves people staring at me like I'm crazy because my son does these things. What can I do? How do you stop something like that in a child forbidden to eat?

Then there are all the behavioural issues that arise constantly as a result of having a starving child. That formula that they drink goes through them like its nothing at all. Both Elecare and Neocate Splash and Neocate are amino acid based, which means that their bodies don't have to break it down in order to consume the nutrients in it. It simply passes through their body undigested so to speak. So, about two hours after consuming eight ounces of that repulsive tasting liquid they are left feeling like they are completely starved. However, Zane got tired of the same taste and texture and would resist the drink making even hungrier. The more hungry he got the more unruly he became. He was constantly acting out and frequently angry. I was the one withholding from him what was a basic human desire to do. And so I was often the brunt of many of his tantrums and physical outbursts.

And so what is life like now that Zane can eat? In some ways, it is actually more work. I'm not complaining though. I'm just letting you know. Now, I actually have to prepare foods. I am back to carefully scanning labels to make sure none of his IgE mediated allergens are present. I have to schedule out my day to feed Zane and reign in some previously learned bad behaviors. For examples, many parents of kids with EE try to down play meal times by allowing kids to watch TV while eating or drinking their formula. Now, we have our meals at the dinner table. Many parents of kids with EE try to eliminate eating and drinking from social engagements all together. So, I was constantly providing entertainment or stimulation for Zane while food was present. Zane would be off on his own while others would eat together - encouraging anti-social behaviour in Zane. He was used to always doing his own thing and now has to learn that sometimes we have to go with the group.

The other challenge for me is that even though Zane can eat now he has a fear of eating since all of his food related interactions have a negative association. Encouraging him to try new foods is difficult and he will often tell me, "No. That food will make me sick mommy." It is taking time but we are getting there slowly. And we are doing it with the aid of medication that is taken with tons of packets of Splenda. Hopefully that stuff doesn't become known as a carcinogenic sometime in the future because many EE kids (like Zane now) are totally dependent on it to eat.

We still feed Zane his formula for two reasons: 1) We want him to stay used to drinking it just in case and 2) because his body doesn't process and tolerate food proteins well it also doesn't absorb many of the vitamins and nutrients in foods and the formula aids us with that deficiency.

What is the best part of the polmicort? Other than the fact that it means that Zane can eat and be a part of society . . . it also means fewer doctor appointments. Or at least I am hoping it does. We (especially Zane) deserve a break from that hectic mess. We would visit doctors, specialists and hospitals about weekly and Zane was hospitalized for dehydration due to vomiting about monthly. Here is a sample of my medical schedule while I was in the States:

July 20th - pediatric laser surgeon specialist for Selma - did a phone consultation instead and cancelled appointment

July 21st - Pediatric visits for Zane and Selma

July 21st - ENT visit for Zane

July 23rd - Visit to the Allergist for Zane and Selma

July 28th - Pediatric plastic surgeon visit at the vascular birthmark foundation for Selma

July 29th - Surgery for Zane to remove his tonsils and MRI for Selma under general anesthesia at two different hospitals

July 30th - ER visit for Zane to stop vomiting

August 4th - follow up visit for Selma at Vascular Birthmark Foundation

August 4th - Zane to the dentist for teeth cleaning

August 5th - Dr. Mirna Chehada - EE specialist at Mt Sinai for Zane

August 7th - Pediatric cardiologist visit for Selma

August 10th - endoscopy appointment for Zane

August 13th - follow up appointment for Zane for ENT doctor

August 17th - Nutritionist visit for Zane at Mt. Sinai's eosinophilic gastrointestinal disorder clinic

August 18th - we leave the States

Basically, the polmicort is a bandaid on the situation until Zane either outgrows some of his allergies or we find a cure. It only works on about 50 - 60% of kids who have EE. So, I am constantly mindful of those still struggling without food and thankful for what I have. I want all kids with eos disorders to be able to eat. But, I have to tell you that it makes me the happiest person in the world to watch my son finally be able to eat and enjoy most of it. There will be other bumps in the road but we'll take those as they may come. For now, I simply want to enjoy the moment.

What was his first food when Zane woke up from general anesthesia after his endoscopy? A keebler graham cracker. The nurse just brought anything she had that didn't have eggs or nuts in it. Here is a pic of Zane enjoying his first bite.

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:

http://sites.google.com/site/allergictofood/Home/living-without-food

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?

Liquid Dieting a Form of Torture

I don't want to become political. However, those CIA memos on torture techniques while Bush was in power has been all over the headlines. One interesting point to note related to EE though is the fact that one of the memos suggests putting detainees at Guantanamo on a liquid only diet as a form of torture.

Here is the link in case you are interested:

http://www.cnn.com/2009/POLITICS/04/16/us.torture.documents/index.html

That really hit home for me when I read it. Although, I knew it was torture. Kids with EE live that life everyday.

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.

A Blessing and a Curse

I'm not one to wallow in self pity. I believe that every minute spent asking, "Why me?" is a minute wasted. There are no victims here and I certainly don't want to raise my son to be one. I believe that things are what they are. I just have to play the hand that I've been dealt to the best of my ability. And I'm really trying to play my hand well here. Having a child with two chronic diseases is a major challenge in life.

When I was initially told that Zane was allergic to all food proteins it was really difficult for me to take in. I cried. I cried a lot. I cried until I reached a point where I am now 'ok' with things. I've adjusted to our new normal - which is essentially a life that is not centered around food. I'm doing my best to come up with creative ways to redefine holidays, birthdays and social gatherings. I hope to teach my son that what makes him different from everyone else is by no means a limitation for him.

My greatest challenge, however, isn't learning how to adjust to our new normal but rather dealing with other people's perceptions and reactions to our normal. That is the major challenge. It's going to someone's house and telling them, "PLEASE. NO FOOD." And yet, they still come out with a bowl of popcorn and chocolates and cookies everywhere. I politely tell them that they aren't being rude by not offering us food. I tell them that this is our normal and we're used to it by now. I tell them that we're fine. And we really are.

When Zane was doing his pork food trial a few people told me that they hoped he failed his food trial. They were my Muslim friends, of course. And they didn't mean it to hurt my feelings but I would be lying if I said that it didn't hurt my feelings. Their kids can eat. They sit at the dinner table together as a family and eat and talk about things. My child can't eat a thing. Every bite of food that he has had thus far in his life has made him ill. The Qur'an does explicitly state that pork would not be forbidden in particular situations, like if there was nothing else for that person to eat and if it was not done maliciously against God's word. Some people, however, don't believe that my son's disease qualifies as such an exception. They can rest assured though that he failed his pork food trial.

While I struggle with feeding my son and giving him all of his medications and making him keep all of his doctor appointments . . . there is the insurance company. This huge beast that exists to make our life easier has become an absolute beauracratic nightmare at times for us. They have denied payments for no particular reason whatsoever - other than just to complicate my life. They denied Zane his medical formula on the basis that he is not tube fed. We battled this out for months until they finally realized doing so was illegal under NY State law.

And then there are the schools . . . . There are still schools that don't want Zane. I actually fill with anxiety over filling out school applications - particularly the medical release forms. They ask: Does your child have any allergies and if so, to what? The forms go on to ask if our child receives regular medical care for any particular medical condition. I know that in the Middle East answering those questions honestly for us will be fatal to Zane's chances of an admittance. I lie. I tell half-truths. I downplay the severity of his odd condition that leaves people scratching their heads wondering out loud, "So, what does he eat??" I usually respond, "He doesn't." He drinks his formula.

And even that hasn't been going so well lately. Zane went from drinking 35 - 40 ounces a day to about 20. I can barely even get him to taste a bite of food. He wants nothing at all. He has already lost a kilo of weight (about 2.2 pounds). For months now I told Zane that it was important for him to drink his formula so that he can be big and strong. I told him that if he didn't that the doctor might have to put a tube in to feed him. Recently, Zane came to me after I asked him to drink his formula and said, "Mommy, let's go to the doctor." I asked him why and he said, "I want the tube because I don't want to drink the formula anymore. I don't like it." I'm trying to prepare myself mentally for the inevitable. I think as Zane gets older it will become more and more difficult for him to drink an increasingly larger amount of the stuff. As for food aversion . . . . I haven't quite figured out how to deal with that obstacle. It seems as if it is both a blessing and a curse. I no longer have to worry about Zane trying to eat and getting sick. At the same time, I really want him to be able to eat. It seems that with this disease there are always new and more impressive challenges ahead.

All in all though, I will say that if I knew what I know now and God came down to me before I had kids and said, "Nancy, here's the deal . . . . I will give you two kids. One will not be able to eat food and will have a chronic condition that will cause numerous health problems . . . blah blah blah. And the second will be at a high risk for the same and could potentially develop the condition at any time in her life. Do you want them?" I would unhesitatingly say yes because both of my kids make me the happiest person in the world. And I am learning so much from my little hero. But, I don't know if that is me being selfish or not. I would rather hope not because I honestly believe with all of my heart that the world is a better place with Zane in it.

A friend of mine from South Africa said to me that, "Parents don't choose their children. The children choose the parents." Thank God Zane chose me.

He's Given Up . . .

Zane's food trials haven't been going so well. I thought that I would simply feed him a food for 6 - 8 weeks and then we do a scope. Unfortunately, we have only been able to fully complete one food trial (corn) which resulted in a high number of eosinophils. After corn we tried grapes. After 2 - 3 weeks of trying to get Zane to eat grapes, we simply gave up. It took a week just to get him to taste them. At most he would eat 4 - 5 grapes in a day and that's it. I thought it was more of a textural issue because many times he would put one in his mouth and not even bite into it and then spit it out.


After grapes, we tried pork. All was fine and went well initially and then more and more frequently he complained of stomach aches. Then about 2 - 3 weeks ago he began vomiting again. The vomiting became almost a daily ritual and then Zane's appetite began to diminish again. Then the stomach aches were so bad that he wasn't able to walk or speak at times. So, we stopped pork and gave Zane a break from food for a couple of days.


Then we decided to try tapioca. That lasted only 2 - 3 days. Once again the severe stomach aches returned and Zane simply did not want to eat them. He took one bite and told me that the food was bad because it was hurting his tummy. So, we ended our tapioca food trial.


I decided to try grapes one more time. Since Zane seemed to dislike the texture of the grapes I decided to give him only sun maid raisins. On the first day he lit up like a Christmas tree at the very sight of them. He inhaled two boxes. By the second day he began vomiting again although he still wanted to eat the raisins. I indulged him and allowed him to eat some here and there but the vomiting got worse. Once again, the stomach aches returned and his bowel movements were looser and looser. Until finally this past Sunday, Zane experienced a stomach pain like no other. He was up screaming and crying from midnight until five in the morning saying that his stomach was hurting him. He curled up in a ball in the corner of his bed asking me to help him - which, of course, I could not. I just laid there next to him and held him all night long until God finally answered my prayer and granted him a reprieve at 5 a.m. Poor Zane was exhausted from being up all night.

That day I took Zane to a friend's birthday party. Pizza and french fries and cake and cupcakes were flying around. Zane used to stand there and watch everyone eat while I tried to distract him away from it all. This time, once everyone sat down for dinner Zane went off on his own to play. When the cake came out he went to sing Happy Birthday and then walked off when they began cutting the cake. Even some of his little friends were trying to offer Zane food. He had absolutely no interest in food whatsoever. For the first time in a year since Zane was diagnosed with this disease, I didn't feel guilty about eating when he was around because he really didn't want food. Normally, I would never even consider eating when Zane was around.


I asked him why he didn't want to eat and he simply said, "I don't like food, mommy." Seems that Zane learned his lesson from his painful session the night before. He has officially given up on food. So it's true . . . One man's meat really is another man's poison.

Anxiety and Assessment Testing

One would think that I have bigger fish to fry (sorry for the food reference) than having to worry about my son getting into pre-school. However, this is a serious reality here in Dubai. Schools are few and far between while the student population exceeds placement availability. One other major challenge for us is that there are no special accommodations made for children with special needs and there are no laws in place to prevent discrimination against kids who do have health, behavioural, mental or learning disabilities.

Case in point . . . back before I found out that Zane was allergic to all food I tried to sign him up for a nursery school. When they saw that he had multiple food allergies they told me point blank that they would not be able to have him attend their school. I honestly didn't care. At that time I felt like I didn't want my son to be where they didn't want him.

But then the next nursery school I tried to place him didn't want him either and I struggled to find a place for him somewhere. That school suggested that I place him in a school called Al Noor, which is a school for children with severe mental disabilities - a problem that Zane thankfully does not have. I had to fight hand, tooth and nail to get him in to his current school. Now that he is in, his current teacher admits that she doesn't understand why they made such a big deal out of Zane's condition because he is completely normal otherwise except for the fact that he doesn't eat food.

The discrimination that occurs here is totally blatant and obvious. I took Zane to a school today for assessment testing and they told the parents that children with special needs would be immediately dismissed. Of course, my heart races and I am filled with anxiety. My daily life is consumed by the fact that Zane can't eat - not so much because he can't but because I can and have to. I don't want to unnecessarily expose him to food as fear of temptation sets in. But, when you throw in situations like this it just makes it worse and more complicated than it needs to be. Why does everything have to be defined with food??

And to think that I used to be the biggest "foodie??" I loved checking out the latest and greatest restaurants. I watched the food network religiously and my collection of cookbooks were my bibles. I would sometimes just sit there and turn the pages reading recipes and coming up with ideas of what to make next.



Back when I was in law school and my husband was getting his MBA, we had our Sundays together. We would go out to a cool grocery store, like the Chinese market, and collect some interesting ingredients. We made shopping an "experience" and not just an errand. We would go home and cook a meal together or sometimes would invite friends over to enjoy it with us.

Now, however, with a child with an eosinophilic disorder any experience I have with food has a negative connotation. Grocery shopping is now a chore and yet another manifestation of guilt that I feel every day because I can eat when my son can't.

I'm trying to come up with new and creative ways of defining and living life without food. I don't want Zane to feel like he's missing out on anything. But, it is difficult. There is a certain amount of social isolation that you experience by not eating because everyone else does center life around it. However, my son is entitled to a good education. To deprive him of that simply because he can't eat food seems to absurd to me.

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.

I'll Take What I Can Get

A few weeks ago I found out that Zane has one more free food he can eat: Hershey's Unsweetened Cocoa Powder. My sister arrived from the States about two weeks ago and brought a few conainers of it. Zane is over the moon with joy that he can have some chocolate. And considering that he is off of all foods and only eating Oscar Meyer bacon . . . I will take what I can get. So, for the record, here is a list of foods (a.k.a. free foods) that Zane can eat.

- Hershey's unsweetened cocoa powder
- Dum dum lollipops
- sugar
- salt
- vinegar
- fleishman's unsalted margarine sticks
- Wesson corn oil

And the Results Are In . . .

When we spoke with Zane's eosinophilic disorder specialist in New York City back in August she warned us about his food trial process: "It could take years before we find a handful of foods he can eat. It could take two to three years -- we don't know," she said.

Here is what she didn't say: That if and when they do discover eosinophils, it is emotionally devastating to say the least. Zane went to Switzerland for his first endoscopy after conducting a food trial (it's his third endoscopy total) and the results from his optomistic Swiss doctor are in:

I understand that your are curious to hear about the results as quick as possible. . . . Concerning the biopsy (short report): Dr. XXX describes a wide variability in the number of eosinophils : distal oesophagus: max 61 eos per HPF, proximal oesophagus maximal 73 eos per HPF. The pathologist classifies the findings (in comparison to the written report from previous biospies) as eosinophilic oesophagitis with "mild" activity and therefore a clear improvement of the findings.
As soon as we have reveived all the results, we will do a final report with our proposal for the further treatment.

For those of you not familiar with eosinophilic disorder jargon, it basically means that Zane is highly allergic to corn. His numbers were still high. Prior to conducting the food trial on corn, Zane's eosinophil count was more than 100 in his upper esophagus and 63 in his lower esophagus. His numbers did drop a bit leading the Swiss doctor above to conclude that he has "improved." But, from a mother's perspective, we still don't have a food to feed Zane and he loves his corn. Now, how do I tell my son that this is yet another food that he can not eat?

Here is my other dilemma: The doctors in New York believe that Zane is not allergic to grapes and possibly not allergic to pork. You really can't do much with grapes but here in the United Arab Emirates, it is national law that you can not send your child to school with pork products. So, if I do a food trial with pork while Zane still doesn't have a food that he is not allergic to yet then I have nothing that I can send him to school with. I have considered approaching the Ministry of Health and Education on the subject but I am afraid to because it wasn't easy finding a school for him to attend to begin with. Some schools didn't want a child to attend with severe allergies and he was rejected on that basis. While that is illegal to do in most of Europe and the States - here it is acceptable practice and considered a 'non-issue.' And I am afraid to turn my son into a poster child for this particular genetic disorder because it scares people off frankly. I want him to have as normal a life as possible that he can given whatever limitations that this disease presents him with. But, that is the thing -- I don't want him to percieve any of this as a limitation.

We will wait for his doctor in New York to return from her holiday and then discuss the findings with her. By the way, at Mount Sinai Hospital in New York City they treat 400 and some patients with eosinophilic disorders. Of those, only two are allergic to corn after conducting a food trial - Zane is now one of those two.

Since our food trial began though we were optomistic because Zane's weight gain improved dramatically. He managed to gain three kilos (approximately just over 6 pounds) and now wears age appropriate clothing. He was vomiting significantly less and is still the same extremely active, overly gregarious two year old you have ever met. He is the life of the party at his drumming class and is usually the first one up and dancing to the beat of the drums. He still loves painting and puzzle making and for the most part has resigned himself to not eating food. Occassionally, he does ask for it and giving him his Elecare is a constant challenge but he is a good kid with an amazing heart. Although, I do have my emotional days when battling this disease, this is the set of cards we have been dealt and I want to be able to say that I played a mean hand and taught my son well. I hope he will continue to be positive and just be himself. The rest will fall into place when it is meant to be.

I should also mention, that Zane is now a proud big brother. Selma was born on October 19, 2008 at 12:34 pm in Dubai at the American Hospital. It was a short and relatively easy delivery and she is now home safe and sound. Zane loves holding her and pointing out all her tiny little features that make all new babies so cute.(originally posted on October 29, 2008)

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)

Medical Care in the Gulf

Dubai has the third fastest growing economies on the planet and is one of the weathiest cities in the world. It is not uncommon to see Bentleys parked out in front of your local supermarket. The mercedes is the vehicle of choice for most local families. Given all of this wealth, one would assume that Dubai, and the Gulf Arab countries in general, have excellent health care and resources. WRONG.

Up until last week, there were absolutely no pediatric gastroenterologists in Dubai. As a result of Zane's rare allergic disease and need for frequent endoscopies, an American board certified adult gastroenterologist ordered the first pediatric endoscopy unit in the Gulf outside of Saudi Arabia. The first pediatric endoscopy was performed on a child in March, shortly before we returned from the States. Prior to that, if a doctor had to perform an endoscopy on a child they used adult equipment which is extremely dangerous.

The other problem with health care here is simply a cultural one. In the East, they simply don't take certain illnesses too seriously - like allergic diseases. When we first moved to Dubai, I told the receptionist at the hotel check-in that I desperately needed a non-smoking room because I have allergies and asthma. He replied by asking me, "What are allergies?"

When Zane had his adenoid surgery last week, my biggest fear was that they would give him medication that contained one of the many things he is allergic to in it - namely soy, egg or dairy, which many medications are made from. They didn't. But, after the surgery they fed Zane food that he was allergic to and then informed us that the hospital did not have the ability to accommodate his restrictive diet.

How do the locals do it, you wonder? Some of the Gulf Arab states are welfare states. The governments provide everything and anything for their wealthy citizens. If you are an Emirati local that needs health care services the government will pay for you and your family to travel anywhere in the world to recieve such specified care. A nose job? No problem. Face lift? Check. Heart bypass surgery? Sure. You got it. The government will pay for its citizenry to stay as long as they need to with all expenses paid.Nice, huh?

Signing off from Dubai - where it was 110 degrees F today,

Nancy

PS. Zane did really well in his surgery and has healed nicely. Thank you to all for your thoughts and prayers.

(originally posted on May 24, 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)

To Be Continued . . .

This blog is currently under construction. I'm working on posting writings, pics and videos of our son . . . However, I also want to hear from you if you or your child(ren) suffer from an eosinophilic gastrointestinal disorder. Email me at nancy.mahmoud@gmail.com and tell me your story. Here is what I am NOT looking for: I don't want any stories about how difficult it was to get diagnosed because that is only a small part of the story. I want to hear about how your daily life is affected by not being able to eat. What do you do for birthdays or holidays? How does your child's school react? How is your child treated? How do you redefine life without food? I want positive and inspirational stories as well as those frustrations and challenges.

For those that want to read about my son's diagnosis, going from a restricted diet to not eating at all and his food trial visit my old blog at: http://theexpatlife.blogspot.com.

I am working on transferring those posts over to this one.

Thanks and be well,

Nancy