"Quod me netrit me destruit."
What nourishes me also destroys me.

Monday, August 30, 2010

Hate to Say "I Told You So, but . . ."

Childhood Autism Now Firmly Linked to Environment


This article ties in nicely to a previous post of mine entitled, "Less is More."  This is an easy read and touches on many of the toxins that are also likely to be a driving force in the rise of EGIDs in the United States.

"Since the '70's, there has been a 60-fold increase in American children with autism. Currently one in every 100 U.S. children and one in every 58 boys are being diagnosed with autism. That's over 2.6 percent of all male children in America. The number of autistic children expected to reach adulthood in the next 10 years along with their caregivers will exceed the population of Rhode Island and cost an estimated $27 billion in additional care beyond the almost $60 billion being spent on current autism-related costs. (1,2)" 

Sunday, August 29, 2010

Haven't We Been Here Before?

When Zane first became symptomatic it was difficult getting doctors and others to believe that there was actually something seriously wrong.  He appeared healthy and had this surprisingly unyielding energy level.  And although he was frequently vomiting and struggling with food he was always this happy-go-lucky kid with an extroverted disposition.  Doctors assured me that his behavior was not of a sick child.  I knew differently though.  Eight endoscopies, three surgeries, four hospital stays and countless visits to the emergency room later have revealed little about this new and emerging disorder.

The picture above is of Zane immediately after his last endoscopy in August.  You can see the band-aids from where the blood was drawn and his finger pricked.  His endoscopy revealed some furrowing in his esophagus since we put him back on his polmicort slurry of only .50 mg /day (.25mg in the morning and evening).  I knew that there would be eosinophils when the doctor said that she saw the furrows.  He was vomiting occassionally as well which is another indication that not all is well.  The morning of the endoscopy he woke up at 5 a.m. complaining of leg and joint pain.  More than a year ago his leg and joint pain was so bad that Zane was often unable to walk or walked with a severe limp.  Several specialists told me that it was nothing.  They told me that I was exaggerating things or that Zane was probably faking it to get attention.  There is nothing worse than a doctor who explains away his/her own ignorance by blaming some pathetic psychological need for attention by the patient.  When I mentioned it to Dr. Chehade at Mt. Sinai last year she denied that the bone and joint pain were related to the disorder.  One year later, she is realizing otherwise.  She now acknowledges that many EE patients suffer with similar symptoms that are medically unexplainable at this point.

Zane's biopsy revealed that he had about 18 - 20 eosinophils per high power field.  There was also some strange irritation in the stomach and intestines.  She suggested that we go back to the 1 mg / day of polmicort (.50 mg  in the morning and evening) and restart 30 mg / day of prevacid just in case the stomach and intestinal irritation is from acid reflux.  She mentioned as an aside that she hopes the disease isn't spreading to other parts of his gastro-intestinal system.  I hope so as well.  It is one of my biggest fears.  Or worse - that the eosinophils could spread to his blood.  So, we will try the new regimine and do another biopsy in October / November in Switzerland and see how things go for Zane.  Fingers crossed that we get a clean biopsy on the next go ahead.
For the first time as well I took Selma to see a GI specialist.  Before I explain why I should tell you that I found out that I was pregnant with Selma one week before Zane was diagnosed with EE.  When I went to see the doctorfor Zane's diagnosis she immediately began to go into how if my first child is born with this disease that every child I have thereafter is at high risk for it as well.  The GI specialist as well as the allergist threw out numbers and statistics at me but I was in a daze and don't recall them.  It was quite high though.  And I know many EE families with multiple children suffering from the disorder.  Girls are less likely to get it because for some reason 80% of cases are in boys.  So, she is at a reduced risk as a result of her gender but is still at risk nonetheless.

Since birth she has had some minor feeding issues, goes through periods of vomiting and diahrea and her stomach is constantly distended.  She also has battles with eczema.  She has never tested positive for allergies.  But, the distended stomach is definitely becoming and issue for her and bothers her quite frequently.  So, just as Zane was, she was tested for celiac disease and we are awaiting the results of that test.  There is something wrong with her though.  I don't know if it rises to the level of severity as an EGID but there is something wrong.  Hopefully it is something minor in her diet that is bothering her that we can eliminate and just move on with our lives.

When I sat there in the hospital waiting for her blood to be drawn I was nervous as I was with Zane.  I remember thinking, "Haven't I been here before?"  It's frustrating but a bit more difficult this time because Selma's symptoms are far more subtle than Zane's violent vomiting.  But, because her symptoms are so subtle many doctors also are ignoring the need for further investigation.  Dr. Chehade understands that she is at risk because Zane has the disease so she agreed to see Selma for that reason I am sure.  But doctors before Dr. Chehade have suggested to me that perhaps because of Zane that I a bit too sensitive and should relax.  One woman told me that I'm in "fight or flight" mode because of my son's illness and that I should just let my kids be kids.

How do I just relax?  If I'm  investigating every symptom then I'm hyper-sensitive.  If I don't then I'm neglectful - especially in light of our context.  I know that I'm over anxious about things because of Zane being sick but how do you "just relax" when you deal with it every single day?  How do you prevent that from influencing how you parent or advocate on your other child's behalf?  I don't think that I can.

Hopefully it is just nothing.  I am not as worried as I was when Zane was symptomatic but it is still something that is frequently in the back of my mind.  It's still something that needs to be dealt with.  Not knowing is the worst part of all.

Friday, June 4, 2010

The Fast of a Lifetime

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


Monday, May 24, 2010

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.


Saturday, May 8, 2010

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:


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.

Tuesday, May 4, 2010

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: