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.