BPA (Bisphenol A) in our Food

I recently heard about BPA (Bisphenol A) in canned goods from another mother and decided to look into it more. What I found shocked me. I had known for a while that BPA was being used in in clear plastic bottles and food-can liners, and had made a conscious decision to purchase water bottles and baby bottles that were BPA free, but I had no idea it was in the food I was eating and feeding to my son as well.

First let me explain a little bit more about what BPA is. "Bisphenol A (BPA) is a hormone-mimicking chemical used in polycarbonate plastic resins, epoxy resins, and other products. It is most commonly used in baby bottles or any type of hard shatterproof plastic containers. It is also found in the lining of canned goods, plastic wrap and other household plastics. Bisphenol has estrogenic properties which, in animal tests has shown to cause a bevy of health problems such as an increase in prostate and breast cancer, uro-genital abnormalities in male babies, a decline in semen quality in men, early onset of puberty in girls, metabolic disorders including insulin-resistant (Type 2) diabetes and obesity ADHD, infertility, and miscarriages". Essentially Bisphenol A is an endocrine disruptor, which can mimic the body's own hormones and may lead to negative health effects.[1]

"A panel convened by the U.S. National Institutes of Health determined that there was "some concern" about BPA's effects on fetal and infant brain development and behavior.[2] A 2008 report by the U.S. National Toxicology Program (NTP) later agreed with the panel, expressing "some concern for effects on the brain".[3] 

In January 2010 the FDA expressed the same level of concern" [4]. Yet despite this concern, we are exposing our children to BPA at a very young age, sometimes from birth, through their infant formula. For some moms, like me, that have a child with CHD that has been hospitalized, breast feeding no longer becomes an option, and the only choice we have is formula. If the makers of formula don't care enough to protect our children, then we need to demand they listen to us and find a safer alternative to BPA.

Of course, "according to the Environmental Working Group, cans are the primary source of human exposure to the chemical. (Most metal food cans have plastic linings that prevent spoilage but are rich in bisphenol A.). A study published in 2007, found that 99 percent of children's exposure to BPA occurs through food. After the Environmental Working Group tested 97 name-brand canned goods, it concluded that 1 in 3 infant food cans, and 1 in 10 food cans overall, contains enough BPA to expose a woman or infant to levels more than 200 times the government's traditional safe level for industrial chemicals"! [5].

While reports are controversial as to the safety or harm of BPA in consumer products, the one thing that is consistent is that companies that use BPA in their products insist it is harmless. 


I, for one, am tired of all the junk added to our food, and so our family has made a commitment to either buy fresh produce (locally grown), grow our own (vegetables and herbs) and cook our food from scratch (knowing exactly what goes into each dish). But for the things I can't change and still have to buy (BPA in formula), I am sending a letter to the companies I shop at demanding better from them, and I hope you will as well.

Great article on this found here. 

Treated with disrespect

Over years of visiting various doctors it is quite likely that you will have run into a few that were condescending, patronizing  or otherwise treated you with disrespect. Knowing how to react and what to say when faced with it can be difficult. Depending on the circumstance, I have reacted differently in the handful of times this has happened to me. Just the other day I was taking my son for one of his monthly treatments requiring an infusion, and one of the IV team nurses was paged to put the IV in him. When she came up, the floor nurses were with another patient so we were the only ones there. Her attitude when I asked if she was from the IV team was condescending, as though as parents we were ignorant and would not be of any use to her. I did not call her on it, but rather explained she was paged for my son, asked relevant questions and continued a conversation with her. By the time the other nurses returned she had warmed up to me and was speaking to me without the air of superiority. 

On another occasion I had gone into to a new clinic while in my first trimester of pregnancy and saw an Ob/Gyn fellow that was not only disrespectful and condescending, but abused her power by threatening me. As a Type 1 diabetic I had to keep records of my blood sugars so I had written all of them down by date and time in a sort of calendar format. After reviewing the numbers, the fellow immediately told me that I should start adjusting my insulin regimen. Now I am certainly not opposed to changing it, but she hadn't asked me any questions, didn't understand that my highs during some parts of the day could be a result of overcompensating for a low, etc, so I asked her if we could try maybe adjusting the timing of the insulin instead for a day or two (as my endocrinologist had suggested) and then if it was still high to increase my dose. She responded by saying she couldn't force me to do anything, so I could do it or not. I was shocked. I was used to working with a wonderful endocrinologist who worked with me by asking questions, determining if my highs and lows were affected by circumstance or activity or my medication and then coming up with a plan that made sense for the situation. On the contrary, this fellow was dismissive and treated me like I was a number with a standard course of action rather than trying to question and understand me as an individual. Things only got worse from there.

I had been diagnosed with hypertension a year ago and had purchased a home monitoring kit to keep track. I had also been given medications that I had taken either 2 or 3 times a day based on my numbers at home and according to previous doctors' recommendations. When I told the fellow that I had been under intense stress lately and had started taking my medication 3 times as day as that kept my blood pressures normal, she completed dismissed my comment about being stressed and asked what my numbers had been. I said they varied but averaged about 140/95, she replied that that wasn't high enough for me to take my medicine 3 times instead of 2 and that if I made adjustments on my own she would not call in my refill, and in fact was thinking about canceling my prescription all together. According to every doctor I have seen, 140/95 is high and should be treated and it seemed like an abuse of power to threaten to not give me my medication if I didn't follow her orders without question. I was insulted, hurt and upset. On the verge of tears, I was not in any frame of mind to call her out on her conduct and opted instead to go home. 

The next day as I replayed the whole conversation in my head, I found I was still upset by her disrespect and unprofessionalism. Realizing it would be pointless to talk to her about this issue, I instead contacted the hospital to find out who the head of the department was and sent him an email explaining the situation. He replied immediately and spoke to the fellow about her conduct. Needless to say I never saw that fellow again.

The point is that disrespect can take different forms and there are many ways to deal with it, but whether you call the person out, ignore it, file a complaint or decide to go to another doctor, I have found that you need to make a conscious decision to deal with the issue in a way that ensures that you and your family are treated with respect. You may not have a medical background, but that doesn't mean that those who do should treat you with any less respect. 

Stand Up For Your Health

     On Friday (April 23rd) I was watching an episode of the doctors as they discussed an issue that is the main topic and reason for this blog - standing up for your health and your family's health. They discussed being an advocate for your children, especially with regards to autistic children, but the points discussed are relevant for anyone advocating for their health or their family's health.


     Areva Martin, one of the guests on the show, is a lawyer and mother of an autistic child who believes strongly in being an advocate for yourself and your child. In her book, The Everyday Advocate: How to Stand Up for Your Child with Autism, Martin discusses being an advocate for children with special needs. The following is an excerpt from her book about what it means to be an advocate:

The Seven Principles  
     Advocacy is not a lofty idea. It is practical work in the trenches. These seven principles can be a guide to what an advocate does--and what an advocate becomes, as a result of applying these principles. 

1.  Take Responsibility  ~ Be a leader 
2.  Learn   ~ Be an expert 
3.  Think Critically  ~ Be discerning 
4.  Speak with Authority   ~ Be pro-active 
5.  Document  ~ Be prepared 
6.  Collaborate  ~ Be a team builder 
7.  Educate  ~ Be a voice for your child  

     ... The concept of advocacy is not about changing who you are. It’s about taking specific actions that will help you achieve well-defined results.  This kind of engagement is the often unacknowledged key to the achievements of so many of the high-performing people I meet in my legal practice every day. In fact, I’m convinced it’s the secret behind each one of us achieving our full potential, not just in our journey to assist our autistic child, but in our careers, our businesses and personal lives.  

     Stephen Covey says that, if a principle is correct, "it is valid and applicable in a wide variety of circumstances.” When you see the effectiveness of the principles of advocacy in helping you stand up for your autistic child, you may be emboldened to apply them in your job, in your intimate relationships and in your business affairs. These principles can empower you in so many aspects of your life. That’s what happened to me.  In my determination to help my son, I discovered principles that profoundly changed my life. I’m willing to bet it will do the same for you. 

     The doctors had several suggestions for how to be an advocate for your health. I have listed a few of there, and my, suggestions below:

• If you are not sure about a diagnosis, or you have been given a serious/life-altering diagnosis, always seek a second opinion.
• If as a mother you feel that there is something wrong with your child, trust your instincts. If the first doctor you see doesn't listen or tells you you are being paranoid ("a first time overly worried mother") see another doctor. And another, if need be, until your concerns are heard and taken seriously.
• Write down questions you want to ask the doctor before, and/or during your appointment and ask your doctor. If there is not time, schedule a time, or extra time, to meet with your doctor to discuss your concerns or ask questions.
• If you are uncomfortable speaking up, bring a friend or a relative with you to the appointment that will speak up on your behalf or encourage you to do so.

     Know your rights, and demand to be heard. It is your health and your family's health that are affected if you don't.

Reading Food Labels

There are many ways to advocate for your health. Some of the most simple ways involve no interaction with anyone other than the person checking you out at the grocery store. I am talking about reading food labels. Being aware of the foods you put in your body goes a long way towards keeping you healthy. And what better way to advocate for your health is there than to find ways to prevent you from having health issues in the first place?

I have to admit that I didn't used to read food labels very often, if at all, prior to a few years ago. I mean if I was going to buy a bag of chips or a box of cookies, I knew how much I wanted to eat and already knew it wasn't good for me. I certainly didn't need to read the label to know exactly how many calories I was consuming. But, as I got older, it became more important for the sake of my weight and health to be aware of exactly what was in the products I was eating. And as I read and read, I became depressed, disgusted and disappointed with the number of products that had high fructose corn syrup and other additives that really didn't need to be in there. I mean seriously if the applesauce a company produces needs to add high fructose corn syrup, there's probably something wrong with the apples they are using (as an example).

So I read and I researched, and learned that there were lots of alternatives to products I loved that were healthier and tasted just as good right next to the products I used to buy. Other than just looking at the ingredients I began looking at serving size and calories and was amazed at what some companies considered a single serving seemingly to make the calories seem lower. Generally, those are the two sections I look at - ingredients, and calories/serving size. Reading food labels doesn't have to be cumbersome as I understand that when you're in a rush who has time for that. But if you don't have time to do it every time you shop, then if you typically buy the same products It just takes one time to take minute to read the label and make a choice. And with all the misleading advertising it really is important to read the label and not just assume because a product says something like "all natural" that it is healthy, as I have made the mistake of doing a few times only to discover "all natural" usually includes tons of added sugar. 

Some of the best sites to help guide you on what to look for when reading food labels are the FDA site here and the Mayo Clinic site here. The more aware you are, the more in control of your health you will be.

Power of Information

I've always been of the opinion that information is power. As a type 1 diabetic for nearly 18 years, it's been very important for me to stay on top my condition. Doing so means understand what diabetes is, how it is caused, what the long and short term effects are of high and low blood sugar. Having that information helped me understand the role diabetes would play in my life, and how to best manage and control it. When I see my endocrinologist I need to be able to tell her what my blood sugars have been running at various points in the day (most of those numbers can be taken from my glucose monitor). But just seeing those numbers downloaded from a machine doesn't help anyone. I need to be able to explain to my doctor why my sugar was in the 200s or even 300s, or what caused my sugar to drop to 35 mg/dl (normal blood sugars should range from 72-140 mg/dl). Keeping notes on what caused those episodes puts perspective on the numbers and allows me to work with my doctor to come up with a better plan for managing my diabetes.

Another time being informed helped was when I was scheduled to have surgery on my thumb. As I was lying there waiting for the surgery to begin I spoke to the anesthesiologist who explained that on top of local anesthesia they would also be giving me medication to make me relax and not remember much of the surgery. Having become familiar with all types of sedatives and other medications when my son was in the hospital I asked him if he meant that they planned on giving me Versed. He said they were. Having done research on the drug (I researched every drug my son was given) and understanding its effects, I told the anesthesiologist that it was not necessary. It was a simple procedure, nothing traumatic I needed to forget, so I preferred to be totally conscious and aware and just have local anesthesia.


Those are specific examples in my life where information has been important, and they may not apply to other people. But, being informed about your health does apply to everyone. And it can be as simple as writing down your symptoms, or questions you have, to ask your doctor, to creating complex spreadsheets to monitor every aspect of your life. Keeping informed is your responsibility to yourself no matter how you chose to do it.

I know my body better than anybody else possibly could, but that isn't simply because it's my body, it's because I've taken the time to research, ask questions and understand the conditions and issues I have; to know what is, and what isn't, normal. When you are in tune with your body, know what is typical for you, and what is not (blood sugars, blood pressures, cholesterol levels, etc), that is power. Not being informed of your (or a loved ones') issues, conditions, or illness, is, in a sense, abdicating control. The point is, that when it comes to your health, you are your most ardent advocate. If you don't understand and stay informed about your body and your issues, who will?

Speaking Up

In almost any situation its difficult to speak up when you know that doing so can make people upset, cause them to dislike you, or think you are being anal retentive (to put it nicely). But, in a hospital setting, in which it is infinitely more important to speak up, it is also much more difficult, as you can risk upsetting people you may see or interact with regularly.

I ran into this problem quite a few times while my son was in the hospital. One issue that came up several times was hygiene and hand washing specifically. Before my son receive his transplant we knew he couldn't get sick or if a heart was found during that time he wouldn't be eligible. So we were extremely cautious about staying away from sick people, washing our hands and using sanitizer, and wearing a mask if we thought there was a remote chance we were coming down with something. As parents, it was the least we could do, but we also expected no less from the medical staff that took care of our son daily. 

Most of the staff did not let us down, they washed their hands or used sanitizer when they entered his room, but a few people did not. They may have washed their hands or sanitized when they entered the unit, but not when they entered Laith's room, and in his situation I was very worried and unwilling to give anyone the benefit of the doubt. That didn't mean it wasn't difficult to speak up, especially when I could tell some of the people I asked to wash their hands were annoyed, but I had to keep reminding myself that it wasn't a popularity contest, it was literally my son's life that was at stake. 

I was always polite. I would generally say something like "I'm sure you washed your hands when you came in, but I'm super anal, would you mind washing your hands again to ease my mind?" I was hoping by saying that they would understand that even if they had washed their hands it would make me feel better if they did it again. There are of course times when a simple "Can you please wash your hands first?" is appropriate, such as when I saw a technician drop his pen a few times and pick it up from the floor and then, without washing his hands, wanted to check on my son. Or when a fellow sneezed into her hand and then wanted to check on Laith without sanitizing first. Absolutely not! At those times, it is apparent that they didn't take the proper precautions and I had to speak up.

I still struggle with speaking up at times, and have to mentally rehearse what I'm going to say in some situations, but after all that we've been through I realize that my family's well being is more important than stepping on a few toes, no matter how intimidating those toes may be.

Our Story

When Laith was born, at 36 and a half weeks, he was not initially breathing and needed to be resuscitated. As a result, he was immediately admitted to the NICU where he was given help breathing and then later help with feeding and for jaundice. He was released 8 days later seemingly as healthy as could be.

The first few weeks he was home after that were great. He was a little fussy, but overall seemed to be doing well and developing fine. At about 7 weeks old we noticed a marked decrease in his food consumption, so we started tracking how much he was eating. It was less than he was eating the week was born and far less that what he should be eating for his weight, so we made an appointment to see the doctor. The doctor asked us a series of questions and said it sounded like acid reflux so they gave us some medicine (zantac) to help counter the acidity.

When we got home and gave it to him it seemed to help for the first few days but the amount he was eating didn't increase at all. We went back the following week to the clinic for follow-up and the doctor we saw that day said he looked like he was breathing too hard and fast and asked us to get an x-ray. The x-ray revealed that he had an enlarged heart and we were told that he needed to be admitted right away for further tests.

After an initial echo, the resident cardiologist told us we needed to be transferred to the Pediatric Intensive Care Unit as his heart was a lot worse than he looked and acted on the outside. After several more tests over the next few days, the cardiologists told us that he had a congenital heart defect and that the problems he had with his heart were extremely rare to occur all at once. He had a large aneurysm in his left ventricle, mitral valve stenosis/regurgitation, as well as cardiomyopathy. The doctors concluded that his heart was too weak for surgery as the whole heart was damaged and barely functioning and that his only option for survival was a heart transplant.

With that understanding, we set about trying to find a transplant facility for him since OHSU, where he currently was, is not one. The closest one was Seattle Children's Hospital so we contacted them to arrange a transfer. After two days of dealing back and forth, Seattle said that unless our insurance could guarantee coverage of the transplant (which of course they couldn't since we had already maxed out our coverage with Laith's stay at the current hospital) they could not accept him. They stated that they could not admit him unless we were able to put up  a 1.5 million dollar deposit!

After contacting a few more facilities in California (Loma Linda and Stanford (Lucille Packard)), we were essentially told the same thing. All of these facilities seemed willing to accept the consequences of him not having this much needed surgery than to be responsible for any of the cost of treating him.

Fortunately, we were able to find a hospital in Pittsburgh (Children's Hospital of Pittsburgh) that was willing to accept him without the deposit and we were able to get him the treatment he so desperately needed. If we had not been advocates for our son, calling hospital after hospital across the country, when the staff and the doctors at our hospital had given up hope, we might not have been so fortunate. 

I distinctly remember the day after our son had taken a turn for the worse, after the doctors had told us they weren't sure how long he had left, and after speaking to Seattle Children's Hospital and Lucille Packard and being told no again feeling a sense of despair and hopelessness wash over me as I sat on the floor of the bathroom and broke down in tears wondering if there was any hope. It was then my sister, who had been helping me with phone calls, called me and said that I needed to call the transplant coordinator in Pittsburgh and that they sounded willing to accept him. Thankfully they did. But it was that moment that I realized the importance of having an advocate. It is for that reason, and for all the families who are in medical situations that make them feel helpless that I am starting this blog. I hope that through sharing my experiences and having others share theirs we can help other families find the hope, the strength and the help they need.