The Fast of a Lifetime

My article about Zane's struggle with EE has been published on altmuslim.com

http://www.altmuslim.com/a/a/a/3767

Sad but Poignant Article about One Girl's Struggle with EE

The Kansas City Star recently did an article about a young girl that committed suicide last year who had been suffering with EE.  I think about this young girl frequently because I see the torture in my own son with wanting to eat but not being able to do so.  I also know the pain that he has to endure as a result of it all.  Although my son it still quite young, I know that he will have to endure a certain amount of social isolation as well as a result of not being able to eat food.  I wonder how his peer will treat him.  I hope you get a chance to read the article.

http://www.kansascity.com/2010/05/22/1964255/redemption-rises-out-of-girls.html

Another Call for More Control Over Endocrine Disrupting Chemicals

This made the New York Times Op Ed section and it is an excellent read about the lack of control over chemicals polluting our bodies and making us all sick.  A nice follow-up to my last post.  Please read it:

http://www.nytimes.com/2010/05/06/opinion/06kristof.html

Here is an exerpt from the article:

"In particular, the report warns about exposures to chemicals during pregnancy, when risk of damage seems to be greatest. Noting that 300 contaminants have been detected in umbilical cord blood of newborn babies, the study warns that: “to a disturbing extent, babies are born ‘pre-polluted.’ ”

As an aside, yesterday marked 50 years of celebrating the birth control pill.  While the birth control pill made many strides, scientists also believe that the synthetic estrogen found in birth control is a contributing factor in the rise of breast and ovarian cancer in women.  Of course, much of this was absent from our public discourse yesterday when discussing how the pill has affected us 50 years later.

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

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