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

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.