Type 1 Study

It's been five years since Colin was diagnosed with type 1 diabetes at the age of seven. As I look back, I stand amazed that no medical professional connected the onset of his illness with the toxicity of our home. No doubt a variety of factors play a role in this disease; however, the factor of toxic load, particularly toxic mold, is rarely discussed.

What if the connection between environment and health was common knowledge? What if our son's case could contribute and help others?

With these questions in mind, we have agreed to participate in a study connecting the onset of type 1 diabetes with exposure to toxic mold. The study is being led by Dr. Luke Curtis, along with Dr. Allan Lieberman of the Center for Occupational and Environmental Medicine.

Dr. Curtis has an MD as well as an MS in public health. He has published eight papers on mold-related health problems, including this one. He has also completed two courses on mold identification and has 20 years experience in mold sampling and remediation. He is one of the few medical doctors in the country who is also a certified industrial hygienist.

According to Dr. Curtis:

I am working on a case series describing children or adults developing type 1 diabetes following documented heavy indoor mold exposure. We are looking for more cases to include in a case series which will be submitted to a diabetes or environmental journal.

Publishing a case series might be very useful in understanding triggers for type 1 diabetes and planning more research on type 1 diabetes prevention.

If you or someone you know might be interested in participating, we would love to hear. Email me directly at andrea@momsaware.org.

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Type 1 Perspective

It's been almost five years since our 12-year-old son Colin was diagnosed with type 1 diabetes. He wrote a blog last week that offers his perspective on living with this disease.

One day is all it takes to change your life. June 26th happened to be that day. The day I was diagnosed. The day that told me that life was going to be different from now on. It was the day that I found out that I, Colin Fabry, had it. Type 1 Diabetes. When I first heard it, I thought it was some type of deadly disease, or something that would never go away. I happened to be right about the latter. But although I looked upon this disease with disdain at first, I later found that there was a gift in this curse.

Coming up on five years with Diabetes, I see now that there was a reason for me having this disease. It was so that I could find a unique way to endure. And I have endured. At times, I just want to take a day off, or go a meal without testing or dosing. But I know that although life would be so much easier if I could, I also know that life would not be complete. We all have our own personalities, our own ways we do things, and our own lifestyles. Mine is living with Diabetes.

When I tell people that I have Diabetes, they usually look a little sad in the eye. Hey, it gets me attention, but it also makes me a little angry. "Why?" you would ask. Because I feel that no one should be sad about my life, lifestyle, and my disease. Usually people with a disease would also look sad and discouraged. Not me. That's why whenever someone hears that I have Diabetes, and gets the sad gleam in their eyes, it makes me a little angry. Because although, yes, it's sad that I have a disease, it shouldn't change everyone's opinion of me. I'd rather be known as Colin Fabry. Not the kid with Diabetes who does a prick here and a shot there. I want to be recognized as me.

Diabetes is a hardship that many people have to face. So whenever I do meet someone with my disease, I feel proud that I can relate to them. I feel as if we share a day. One day. One day that told both of us that nothing would ever be the same. One day. Because one day is all it takes to change your life forever. And that one day was June 26th.

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Colin's Diagnosis: What I Wish I'd Heard

It’s been 3 1/2 years since Colin was diagnosed with type 1 juvenile diabetes. I took him to the doctor for what I was certain was a bladder infection, due to his frequent urination. We ended up in the emergency room. Thus began our odyssey: a 24-hour-a-day, 7-day-a-week journey into the world of keeping our child alive.

I am grateful for the compassion of doctors. “You can do anything you want in life,” the first on-call physician told my son. “Anything except drive a truck, fly an airplane, or serve in the military.” I started crying when she said this. In truth, she was talking to me, not my 7-year-old son who only wondered when the IV could be removed.

The next doctor assured me we didn’t need to change anything drastically. No big dietary changes, no social changes. In retrospect, I’m grateful for the assurances. My brain could not have handled too much change. I was trying to learn how to give shots and calculate carbs.

“Before you know it, this will become a natural part of your lives,” the next doctor consoled us.

I can’t say enough about the care we received. Kind and compassionate. Reassuring and comforting.

But there are two things I wish I had heard. Pieces to the puzzle that might have changed the course of our lives.

1. Consider your environment.

Imagine if we had heard this: “We’re not sure what triggers the onset of this disease. Environmental factors may or may not play a part. But since there is no family history of diabetes and we know there are numerous toxins in the world that put stress on a young child’s body, let me ask you, have there been any changes in your environment recently? Any type of water damage in the home, mold issues, repairs?”

“Funny you would say that,” I might have responded. “We are in the middle of a major mold remediation. We discovered and exposed this mold 7 weeks ago.” Perhaps the doctor would have been interested in the fact that our dog had been diagnosed with type 1 diabetes two years prior, which might have validated the environmental factor.

Had we connected the hazards of toxic mold to the diagnosis, perhaps we would have tested our home. Perhaps we would have left. Perhaps we would have been spared the next 12 months of suffering. Our other children became seriously ill within weeks of Colin’s diagnosis.

I can’t say for sure the mold caused my son’s diabetes. What I can say is it contributed to the onset. It seems plausible to me that an attacked immune system (assaulted by the same toxins found in yellow rain) can easily get confused and attack its own healthy cells.

2. Radical diet change will help.

I wish we had heard this: “No need to make any immediate dietary changes. I know this is a lot to assimilate. But when you are ready, there are numerous dietary changes that can help your son. These are difficult changes, but they will benefit him as well as every member of your family.”

If a friend had told me to cut out the sugars and refined foods, I would have inwardly rolled my eyes. If an endocrinologist had explained the stress fructose puts on the liver, I would have listened.

If a doctor had explained that gluten irritates a compromised digestive tract—something that Colin suffered severely from—I would have listened.

If a doctor had explained the incredible benefit of fresh vegetables, I would have listened.

We left our environment 15 months after Colin’s diagnosis. I wish we had left the day we came home from the hospital.

We have made the massive dietary changes. I can’t believe the difference this has made. Colin uses 75% less insulin than we used in that first year. He typically goes an entire day with less than 10 units of fast-acting insulin.

Since we left our home, and since the diet change, Colin’s migraines have disappeared. He rarely complains of abdominal pain and his rashes have improved.

He still has a life-threatening illness, but we’re managing it. And just as promised, Colin is thriving and enjoying life.

Somewhere there’s a family coping with the new diagnosis of their child. Perhaps our experience will help.

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Who's the Best Pancreas?

It's not easy being a pancreas. Frankly, I don't like the job. If my son's life didn't depend on it, I'd happily resign. Colin was seven years old when he was diagnosed with type 1 diabetes. We did our best to explain that since his pancreas wasn't working, Dad and I were happy to fill in. The idea took hold. Whenever he'd test in range he'd give us a high five and say, "Who's the best pancreas?"

The problem is we're not the best pancreas. We fall short. We go an entire day with perfect blood sugars and hit 300 for seemingly no reason. It's a constant learning curve.

The other morning I woke up at 6:45 a.m. and did what I do most every morning. Checked his log book to see if he was up in the night. (Thankfully, Chris becomes lead pancreas between the hours of 10 p.m. and 5 a.m.) Sure enough, Colin went low during the night. Sigh. I thought our dose of 7.1 Lantus was conservative. Guess not.

Chris wrote about the episode in a recent blog entry:

I hate the smell of insulin at 1:30 a.m. I hate the smell of just about anything that early, but especially insulin. It smells like something stored in an army footlocker. Maybe old combat boots. Perhaps a textbook on WWII tactical weaponry.

At 1:14 this morning Colin awakened me, his face close to mine. “I feel low.”

I hate those three words, too. Not because I have to get out of bed but because I know what it’s doing to his body. How ravenous he will be. I’ll need to act counterintuitive to that.

Okay, I won’t lie, I hate getting out of bed. It’s a long way up from the air mattress and my bones want to stay close to the ground.

So we do the pancreas dance. He trudges from the room and slumps in a chair, his jaw slack, panting. He gets out his insulin case, opens it, retrieves the poker, gets up, washes his hands, goes back, pokes, gets blood, inserts the strip into the meter, waits for it... waits for it...

I stumble into the kitchen without glasses and stare at the green numbers on the microwave.

1:14.

I hate diabetes.

“Beep.”

“58,” he says.

Normal people have a pancreas that works. Normal people take their pancreas for granted. You eat a bag of Doritos or a Snickers bar and never pray your pancreas will produce insulin. Your pancreas regulates your body’s blood glucose levels to remain steady somewhere between 80 and 120. Don’t hold me to that, it’s early. But that’s basically where you stay. Fall below 70 and you feel it. Fall below 60 and you shake. Keep going down and you’ll eventually pass out. Some people don’t feel it anymore, they can’t tell they’re getting low, but Colin can. Sometimes I think that’s God’s gift to us.

He has a spoonful of organic honey that organic bees have been spitting into organic buckets on organic bee farms somewhere in Organicville.* That will bring him up a notch and take the edge off. But we’ve only begun. He has 3 little mini-peeled carrots which aren’t approved by the organic bee society, but I don’t see anybody from that organization in the kitchen at 1:40 and their 800 number isn't staffed at this hour. So he eats the three mini-peeled carrots.

I’ve been known to make a stir fry at this point, chopping onions and cabbage and mixing with an egg or two. It’s protein and will help him hang on until morning. I grab two eggs from the refrigerator in the garage and Colin meets me there, pulling out a special drawer.

“I was thinking this,” he says, holding out a Granny Smith apple. The organic kind with the orange ring around it.

I roll my eyes like it’s fruit from the tree of the knowledge of good and evil. We haven’t had fruit for a long time but apples are slowly being reintroduced to the diet. I have no idea what this is going to do to his levels. His body will react wildly to the fructose. You will say, “But it’s an apple, leave the kid alone.”

Exactly. It’s just an apple. That’s why I hate diabetes. I have to dose him for a stupid apple.

I hate dosing a shaking kid who gets up in the middle of the night. I hate drawing up the insulin and handing him a needle he shoves into his skin. But if I don’t, his number will rise above 120, above 200, above 300.

So I write all this down in his book I also hate that says when he went to bed he was 111. And I see how much insulin I gave him to keep him in range overnight. We obviously overdid it, but when I compare the number from the previous night that was exactly the same, I wonder. Did he have more exercise? Did he not have something right before bed to hold his levels steady? Am I supposed to click my heels three times and say some magic incantation to keep him above 80? How does a pancreas do it?

... I hand him the eggs and get out the insulin bottle. We have determined that there were 24 carbs in the apple. There were also a few in the honey and the mini-peeled carrots.

“How much would you have for just the apple?”

“Mom would give me 2 units.”

My wife would give this dose without thinking. She rattles carbs in her brain like a supercomputer. I am right-brained, more creative, which is wonderful if you’re writing a song or a book or an essay on civility, but if you want to keep a kid’s glucose meter from saying “HIGH” and playing Mozart’s Requiem at 1:55, you need the left hemisphere of your brain and I do not have as much as my wife does.

I can’t give him 2 units. I do not want him shaking in an hour or two. But I don’t want him to go high either. That is my conundrum at 2 a.m. Forty-five minutes ago I was under the covers. I'm beginning to think I won't be going back to bed.

I decide on 1.25 units. I feel good about that. It’s a safe dose. I hand him the needle and he puts it in his thigh. Was it enough? Probably not.

He looks in the refrigerator again, the light reflecting off his face and the robe that makes him look like Hugh Hefner’s son. He sighs, closes the door, and rubs his eyes on his way back to bed.

“Goodnight,” he says.

“Goodnight.”

“I love you,” he says.

It won’t be long before he’s doing all of this by himself. It won’t be long before he’s staring into his own refrigerator in his own house or apartment. I’ll be asleep somewhere, oblivious to all of this.

“Love you, too,” I say.

And I do.

No matter how much I hate diabetes and organic bees and sharp needles and writing down statistics of a little boy who didn't do anything to deserve this, I love him. And that’s what will keep me up until 4 when I’ll check him again.

*Addendum*
4:20 a.m. It took me five minutes to wake him, but we tested. His level is 148. Within the acceptable range. Sigh

(* Not sure about Organicville, but the honey is called Really Raw Honey and can be found here.)

Sigh. Chris is right. Colin will be his own pancreas one day. In the meantime, we'll keep "filling in." As for that 1.25 dose? All I can say is, "Who's the best pancreas?"

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Birthday Menu

Colin celebrated his 11th birthday last weekend with a touch football game and a food wish list that would have shocked me a year ago.

Colin was diagnosed with type 1 diabetes seven weeks after our first major exposure and has struggled with erratic blood sugars ever since. To accommodate his illness, as well as our own, we transitioned from a high carb/refined sugar diet to a diet high in proteins, fats, and vegetables. (Sugars and high-carbohydrate foods feed fungi, yeasts, and other unfriendly pathogens.)

Colin has had a tough time with the transition. His mind has been willing. It's his body that has fought the change. I now understand the harsh reality of carb/sugar cravings.

Slowly, ever so slowly, things have improved. This is reflected in the following wish list, which we happily granted.

Breakfast: Fruit smoothie with homemade goat yogurt, stevia, and frozen strawberries. Jicama fries. (Sliced and stir-fried jicama tastes just like hash browns!)

Lunch: Beef stir-fry (with Kaitlyn's special cauliflower rice and peas).

Dinner: Restaurant with Dad. A meal of grilled chicken breast, steamed broccoli, and grilled zucchini.

Dessert: Crustless pumpkin pie with stevia.

The day's festivities required a total of 8 units of insulin. A far cry from the 20-30 we often needed on holidays and birthdays.

It was a great birthday for Colin. And not just because of his new favorite foods and his stable blood sugars.

It was the special NFL jersey he received. The one bearing the name of his hero, Jay Cutler, the Chicago Bears quarterback with type 1 diabetes.

With Colin's new breakfast of champions, the NFL had better watch out.

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Health Reform

It's hard to believe that at one time in the history of the church, people were not permitted to read the Bible for themselves. They relied entirely on the knowledge of others. Many couldn’t read, but even the ones who could had to listen to the words in another language and then have them interpreted.

This eventually changed, but it took years of reform and awakening.

I can't help but draw a parallel with our prevailing public view of medical care.

When Colin was first diagnosed with Type 1 Diabetes, I had no idea where the pancreas was located in the human body and certainly had no idea of its function. It didn't occur to me to study this information. I simply wanted to know how to take care of my son, and I relied solely on the medical professionals.

As our illnesses progressed over the next year I continued to see doctors as the experts. I was the common layperson in the pew.

But something shifted during this time. Something deep inside. I began to listen to my instincts as a mother. I began to trust those instincts. There was an awakening, and my view of the medical world changed.

I bought an Anatomy and Physiology book. I began to study for myself.

I learned about enzymes and amino acids. I studied the functions of the liver, the pancreas, the salivary glands, the vestibular system, and the parasympathetic nervous system.

I didn't lose my respect for the medical profession. I'll never be able to perform an emergency appendectomy or remove a cancerous tumor. I'm grateful for those who can.

But I can learn. And ask questions.

Thanks to the Internet, many of us are finding empowerment when it comes to our health.

This tells me that health reform isn't going to come from Congress after all.

Perhaps it lies within each one of us.

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Air Traffic Control Tower in the News

At the height of our exposure to toxic mold, I experienced serious memory loss and concentration issues. I assumed the problem was stress or age. I certainly didn't connect it with our mold remediation.

I was taking care of numerous sick children including a son with type 1 diabetes. I struggled with his doses and one time gave him our dog Pippen's insulin. (Pippen was diagnosed with type 1 diabetes soon after our move into the home.) I didn't notice the insulin mistake. Colin did. He saved himself from a sudden blood sugar drop. He was 8 years old.

Consider the risks involved when the men and women charged with directing airplanes in and out of a given airport are exposed to toxic mold. This story centers on the air traffic control tower in Detroit.

Detroit Tower Mold News Story

Just this week Congressman John Dingell released this statement.

“It is no secret that I have long been concerned about the black mold issue at Detroit Metropolitan Airport’s Air Traffic Control Facility. Since the mold was first discovered in 2005, the Michigan delegation and I have pushed the FAA and the Department of Transportation to undertake a swift and controlled remediation that would not endanger the health of the facility’s employees.

While I appreciate the progress that has been made since February, I still believe that more must be done. Unfortunately, almost three years later, I continue to receive calls from constituents employed at the facility that have become severely ill as a result of the mold.

To that end I will continue to hold the FAA to their responsibility of remediating any remaining mold in the Tower in a quick and responsible manner. I have also requested that the National Institute for Occupational Safety and Health do an on-site evaluation of the working environment. In an effort to speed these efforts along, my staff was at the table with the employees and their union when the Chief Operating Officer of the FAA met with and toured the facility. I have monitored this situation closely, and I will continue to do so.

It has come to my attention that 13 other airtraffic control facilities are experiencing mold issues similar to Detroit Metro Airport. My experience on this issue over the last few years tells me this should serve as a warning bell to the FAA that the current situation is far from adequate. It is clear to me that there must be a zero tolerance policy on mold in our air traffic control facilities.

Further, I encourage the FAA to extend their recent progress beyond the state line. I have argued cleaning up the mold is critical to both the safety and well-being of the employees of the facility, and the flying public. We require our air traffic controllers to have an uninterrupted focus and they deserve the finest, safest facilities in order to handle their complex tasks; anything less is both irresponsible and dangerous. It is not too late for those overseeing the facility to heed these concerns and provide an example of the government living up to its responsibility to both its employees and the public.”
I see this story and, like I do all news stories that focus on toxic mold, I hope this is the one that wakes us up. Before we experience a devastating tragedy.

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Mold and Type 1 Diabetes

No doctor has told me that our mold exposure caused Colin's juvenile diabetes onset in June of 2007. I can't prove that it did. But there's no doubt in my mind. When we moved into our dream home in June of 2000 Colin was 6 months old. In light of the 7 older siblings who needed bedrooms Colin drew the short straw. We converted a large closet into a "Blue's Clue's" room. The closet was directly below the master bedroom shower where we would discover stachybotrys 8 years later. With the knowledge I have now I would never put a baby in an unventilated room. This is the reason I suggest opening windows whenever possible. Air circulation is critical. Within months after our move, Colin developed swollen adenoids. The pediatrician was undaunted by this and recommended surgery at age 8 if they were still swollen. I now know that swollen adenoids indicate a stress on the glands due to bacteria, virus, or fungi.

In May of 2007 we uncovered mold in the downstairs bathroom (located below Colin's original room). You will read this in "our story" which is located in the helpful links section of this blog. The mold was improperly remediated and all of us were exposed to high levels of toxic black mold. On June 24th (7 weeks after the exposure) my oldest daughter took Colin to a movie. She said he had to go to the bathroom numerous times. On June 25th we took Colin to a sporting event in Denver. We had to pull off the Interstate to let him go to the bathroom and then take him numerous times once we arrived. I was sure it was a bladder infection. He looked thin but he was a growing boy. The next day I took him to the doctor expecting a prescription for an antibiotic. We ended up in the emergency room.

Colin does amazingly well with his new life. Five shots a day and multiple finger pokes have somehow become routine. It's the other issues like numbness, migraines, rashes, and severe abdominal pain that get him down. These are slowly getting better. His pancreas won't get better. I hope for a cure one day. Perhaps his story will help others.

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Stories

I remember in the weeks following Colin's diagnosis with type 1 diabetes I heard of numerous people with friends or relatives with the same disease. Suddenly,diabetes was everywhere I turned. It's the same thing with mold. In the weeks we've been in the Tucson area I have encountered numerous people with stories of their own. My daughter Megan needed dental work. She told the dentist her story of mold exposure. "Interesting", he said."We had mold remediation done several months ago and ever since my wife hasn't been the same." Mood changes and concentration issues have surfaced. He didn't know about the mold specialist in Benson. I talked with a woman whose daughter is in medical school in the Caribbean. We were considering this woman's rental home. I asked about water damage in the home and she seemed unusually interested and aware. She explained that her 24 year-old daughter lived in a brand new "super" dorm this last semester.
The daughter got quite sick and noticed mold under the cracks in her walls. Numerous students complained of illness as well. In this case, construction continued too soon after a heavy rain. I talked with a nurse in Dr. Gray's office who explained what happens to her when a mold patient comes in with contaminated clothing. She starts coughing immediately. She said she has to leave the room usually because she is so short of breath. One of the assistants in the office breaks out in rashes just from handling the paperwork. I talked with a property owner in Sierra Vista who had dozens of rentals remediated last year for toxic mold. It's quite sobering to realize the extent to which mold is an issue in our country. In large part because we have no mold standards. But that is worthy of a different discussion.

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Tears of gratitude

I can't imagine a harder week than this last week. I'm glad tommorrow is the start of a new one.

Because of the holidays we were unable to replenish our supply of prescriptions. Last Monday morning I spent 2 1/2 hours on the phone talking with the suppliers. Our treatment protocol involves 5 different sources. We have a temporary address so it's a bit more complicated. Mistakes were made, shipments were late, insurance didn't come through, and addresses were wrong. In addition, I lost the use of both of my credit cards. (long story). Colin's test strips for his blood sugar meter went from 20 dollars to 120 dollars for the second time in a year. More phone calls. More decisions. New samples have to be mailed to the lab in Texas when I thought they had archived the previous ones. I sent in tests for a home we're considering renting and heard on Friday that I made a crucial mistake. I followed the directions carefully. It said nothing about clear tape instead of masking tape. It had taken hours to do. Friday morning I opened our new nebulizer. It felt like Christmas. It wouldn't work. I called the pharmacy. The customer service representative told me what I already knew. No refunds. It's possible to get a replacement but it will take a month. I knew this because the first one I bought didn't work and we're still waiting on that one. She asked me what I needed it for. I told her. She took the time to listen and ask questions and then she let me cry. She told me about her experience the night before. She was driving to a new doctor for chronic pain. She got lost. She went 30 miles out of her way before turning around. She was charged 500 dollars for the visit when she thought it would be 200 dollars. She said she cried all of the way home. "And so," she said, "I understand how you feel." I cried again. This time out of gratitude. 

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