Less is More . . . Dangerous

I'm a mother on a mission.  I don't just want a cure for my son.  I want to know what caused this.  And I want to prevent this from happening to anyone else's child.  Since Zane's diagnosis I sit in front of my computer almost every night reading and researching.  I'm hoping for something that will shed some light on my son's suffering.  There is nothing concrete thus far.  But, my learnings have been eye opening and a bit disheartening at times. 

Initially I felt like a dog chasing its own tail for a while until, one day,simply by accident I was listening to a podcast of Living on Earth and stumbled upon a story about endocrine disrupting chemicals found in our everyday environment that are toxic at low dose levels.  The show was called, "The Dose Makes the Poison."  Here's the thing:  endocrine disrupting chemicals, or chemicals that change or alter our genetic code, are everwhere.  And in everything.  The FDA and EPA permit them so long as the exposure is not at a very high level.  However, endocrine disrupting chemicals can be toxic at very low levels.  Some endocrine disrupting chemicals are only toxic at low levels.  For example, tomoxifen, the drug used for breast cancer patients is an endocrine disrupting chemical.  At high levels the drug stops cancer.  At low levels it causes the cancer to grow and spread.  In this particular case, less is more dangerous.

The scientist on this one particular segment on Living on Earch briefly mentioned phthalates, a plasticizer found in practically everything and everywhere in the United States.  This plasticizer is an endocrine disrupting chemical that scientists now believe is toxic at low levels.  Levels that the FDA or EPA does not test or regulate, unfortunately.  He briefly mentioned that one of the side effects of phthalates [pronounced tha-LATES] is that they effect mostly males (fetuses, babies and toddlers are particularly vulnerable) AND that they have a tendency to turn on the gene in our bodies that produce a hyper-allergic response to things.  He goes on to say that we know that allergic diseases are on the rise in the United States.  BINGO!  I felt like I was no longer chasing my tail.  I had something to go on now.

I started intesively studying phthalates and their effects on human beings and the research is compelling.  There is overwhelming evidence that at low levels phthalates are dangerous.  It is a neuro-toxin that some research is also linking to autism and ADHD / ADD.  The United States is the largest producer of phthalates with Exxon Mobile the primary company producing them.  The EPA is currently considering placing several types of phthalates on its "Concern List" as a result of their effects on human beings.  The Chemical lobbying industry is eager to prevent this from happening.

My research also led me to learn that most of Europe and even China have banned many US produced phthalates as a result of their harmful effects.  Many European countries do not permit phthalates in children's toys, baby bottles or in medical products.  BPA (bisphenal-A) is banned in many European countries.  The US was going to follow suit, however, lobbyists put a quick stop to that.  The most toxic plastics are those numbered 3, 6 or 7.  You can check underneath plastic bottles in the triangle recycling sign.  You should avoid heating plastics in the micowave, drinking or eating from plastic containers or dumping plastics in our environment.  Recycle.  Recycle.  Recycle.  We want to avoid having plastics contaminate our environment.

When I read these things, I thought back to how I used to heat Zane's baby bottles in the bottle steamer.  I would warm up his food in those plastic storage trays and let him chew on plastic teething toys.  There is a chance that I made my son sick through exposure to toxic chemicals found in our environment.  Chemicals that I thought were safe because our government allowed them to be there.  OR . . .  an even worse scenario is that the phthalates found in my body from years of my exposure to them caused a genetic anomoly when I was pregnant.  Phthalates can be found in all of us.  The damage can not be undone but we can minimize and reduce exposure by drinking from metal sippy or sports bottles, glass or ceramics.  We can also choose to avoid products that contain phthalates.  Don't give plastic toys to your child.

I can't undo what has been done to Zane.  But, I can try to prevent that from happening to anyone else's child.  I don't want anyone to know what a torture it is to have to live a life without food.  It is a painful existence.

Even though it is the only life that Zane has ever known, it is still a constant everyday struggle.  Some days are easier than others.  We have decided to stop all medications on Zane. The polmicort is a steroid that is dangerous and wasn't working anyway.  Zane hasn't gained any height or weight since last November.  His peers are beginning to outgrow him.  And Zane and his peers are taking notice.  He is beginning to get bullied and teased at school because of his size.  It's just a matter of time before they begin to pick on him for not being able to eat.  I'm trying my hardest to teach him to use his words to fight back. I'm trying to teach him to stick up for himself and to stay positive.  But, it isn't always easy.

Since taking Zane off of all meds, he is now also back off of all foods.  He is mostly drinking his formula and his intake is ok.  He usually drinks about 35 ounces a day which is a serious struggle.  I wake up in the middle of the night to feed him so that we can increase his daily intake levels.  It's exhausting.  I miss getting a full night's uninterrupted sleep.  But, the alternative is a feeding tube which I am fervently fighting against.   I know that this fight may be futile and selfish on my part.  I do recognize on an intellectual level that a feeding tube may be what is best for Zane.  But, on an emotional level it is difficult for me as a mother to reconcile with the fact that I would have to feed my son through some feeding tube.  Feeding your child is a mother's first and most basic instinct and sign of affection and love.  So, I go on setting my alarm clock usually once but sometimes twice a night to feed Zane.  I am hoping that now that we have taken Zane off of the steroids that this may also help him to gain some height and make up for lost time.  We'll never know though.

We are considering going back to doing food trials as well.  But that is another special type of torture.  Zane gets tired of eating the same food every single day for 8 weeks.  And the frequent scopes are emotionally draining.  The last scope Zane did in New York City last August was his seventh one.  The doctor ran through all the information, side effects and possible dangers that she is legally obligated to inform me about.  And I signed the papers that I am legally obligated to sign in order for Zane to have the procedure done.  At the end of her speech she says to me, "You're a pro at this.  You know all this already."  Yeah.  Maybe I do.  But, his seventh endoscopy was just as upsetting to me as his first.  I get teary eyed every single time.  The sadness never wanes.  Each and every scope is equally upsetting to Zane.  He fought against his first scope by kicking, screaming and yelling until the general anesthesia took effect.  He did the same for his seventh scope as well.

I sometimes kick myself for not knowing better and protecting my unborn child and baby against toxic chemicals in our environment.  And then other times I forgive myself for not knowing better.  But, the least I can do is warn others.  I can't state for certain if phthalates and other endocrine disrupting chemicals did, in fact, cause my son's illness.  But, I do know that they aren't safe.  I do know that less is more dangerous in this case.

Here are some links that you may be interested in reviewing:


http://www.loe.org/shows/segments.htm?programID=09-P13-00036&segmentID=3

http://www.time.com/time/specials/packages/article/0,28804,1976909_1976908,00.html

http://www.noharm.org/us_canada/issues/toxins/pvc_phthalates/phthalates.php

http://www.paramuspost.com/article.php/201003080729337

http://www.nytimes.com/2010/02/25/opinion/25kristof.html?src=tptw

http://www.environmentalhealthnews.org/ehs/news/breaking-news-bpa

http://www.sciencenews.org/view/generic/id/57949/title/Study_reports_hints_of_phthalate_threat_to_boys%E2%80%99_IQs

http://www.theglobeandmail.com/news/technology/science/eureka-less-poison-really-is-more-deadly/article1499340/

http://www.keepitorganic.org/2006/10/20/link-between-phthalates-and-increasing-allergic-reactions/

http://www.epa.gov/oppt/existingchemicals/pubs/actionplans/phthalates.html

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?

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.