Fabry Family Toxic Mold Experience

This is one of the closest stories I have found that mimics what our family has been through over the past couple of years. I have come to love Andrea and thank God for placing her in our lives during one of the most trying experiences we have ever been through. I have to agree with her that the real healing journey is bringing us closer to God.

Timeline of Events

The following timeline, written by momsAWARE founder and president Andrea Fabry, chronicles the Fabry family's experience with toxic mold exposure and also details the events that occurred during the year after they vacated their Colorado home. 
 

· June 2000 Chris, myself, and our 8 children move from a small 1800-square-foot home in suburban Chicago to an expansive, relatively new 5500-square-foot home in Monument, Colorado. We choose Colorado for its beauty and close proximity to Chris’ writing colleagues.

· June 2001 through May 2007 Our 9th child, Brandon James, is born in June of 2001. We begin to see some medical issues arise. Our oldest daughter develops a severe nut allergy. Our 4th daughter is diagnosed with complex partial seizure disorder. Other issues arise in the family, such as mild hearing loss, heavy menstrual bleeding, rashes, nickel allergies, swollen adenoids, and a dog with diabetes. We make no association with our home.

· April 2007 Our 11-year-old son, Reagan, has skin biopsy for mysterious rash in the form of small bumps on his elbows and other joints. Dermatologist cannot diagnose the cause.

· May 9, 2007 (the day before Mother’s Day) In the process of preparing for carpets to be cleaned in our downstairs, I notice a brown spot in the corner of our oldest daughter's room. It is located directly behind a bathroom. After uncovering the spot and cutting into the wall we discover black mold. We learn much later that cutting into the wall caused the spores to be released, thereby putting the family at risk. We call a mold remediation team to diagnose and treat it. They do not wear masks and do not ventilate the contaminated air. They assure us there is no risk or danger. We believe them.

(14 months later I would read this: Remediators who are not wearing any face, mouth, hand, or body protection in the midst of visible mold or moldy odors are untrained and should be asked to leave. You will be hurt by their lack of training. From the book "Your Guide to Mold Toxins" by James Schaller, M.D. and Gary Rosen, Ph.D.)

· June 26, 2007 (7 weeks from the date of exposure) Our 7-year-old son, Colin, is diagnosed with Type 1 Juvenile Diabetes. Research suggests a "toxic trigger" for onset. Colin slept in a room with little to no ventilation, which could explain his predisposition to diabetes (with toxic fumes in the home). His adenoids became swollen soon after moving to Colorado. "Usually, enlargement of the gland indicates increased working of the gland, i.e. reaction towards the disease or infective agents (bacteria or viruses or fungi)." With no family history and little experience with medical issues, we are launched into a new world.

· July 2007 We learn from our insurance company that slow leaks and/or mold are not covered.

· September 11, 2007 Reagan calls from school to say his ear is ringing. I take him to a top neurotologist in Colorado Springs.

· October 1, 2007 Reagan’s ringing is debilitating. MRI and blood work scheduled.

· November 1, 2007 Reagan wakes up dizzy. A few days later he is up all night with vertigo and vomiting. His last day of 6th grade will prove to be October 31.

· November 6, 2007 We seek a second opinion at Children’s Hospital in Denver. Because of the severity of the vertigo attacks we are admitted to the Emergency Room. The senior neurologist determines there is nothing neurologically wrong. ENT doctors at the hospital are mystified.

· November 10, 2007 As the violent vertigo continues, the neurotologist gives the diagnosis of Meniere’s Disease and performs shunt surgery. Reagan recovers well and begins vestibular rehabilitation as walking has become labored and difficult.

· November 22, 2007 Vertigo returns with a vengeance. Phenergan and valium are prescribed. We are now carrying Reagan as his balance is clearly disturbed.

· November 28, 2007 Reagan is admitted to the hospital for an injection of gentamiacin with the hope of killing the 8th nerve on the left side. Following surgery he is admitted to the rehabilitation unit at Memorial Hospital, as he is only able to walk with the help of a walker. His balance is restored on day 7. He is perpetually dizzy and crying at night, the dizziness is so intense. The rehab people seem mystified that he is chronically dizzy. Rehab doctor assumes it must be psychological.

· December 7, 2007 Reagan comes home from the hospital. Vertigo comes back within days. Perpetually dizzy 24 hours a day. Awake until 2 a.m. most nights until exhaustion overtakes him. I have to hold him and sing to him until he finally falls asleep.

· December 21, 2007 Second gentamiacin injection. Outpatient surgery.

· December 22, 2007 Vertigo intensifies.

· December 25, 2007 Christmas. Reagan is terribly dizzy. Bangs his head against the couch to try to get rid of it. He’s trying to cope with the lack of progress.

· January 3, 2008 The neurotologist says Reagan needs tough love. I sense there is nothing more he can do.

· January 2008 Our son with diabetes (now 8 years old) continues to complain of headaches and blurred vision. Says he is seeing double. After ruling out complications from diabetes, glasses are prescribed.

· January 2008 I notice unusual rashes on our 6-year-old son, Brandon.

· January 2008 I call an environmental hygienist in Denver and talk with him at length about my children’s illnesses and the mold remediation in May. He does not believe the illnesses are related to last year’s exposure. He is aware only of respiratory illnesses related to mold. He says we would be wasting our money to have our air tested. He comments on the fact that the remediation team wore no masks. He calls it poor business practice and unprofessional.

· February 2008 Our 10-year-old daughter Kaitlyn continues to complain of headaches, double vision, and dizziness. She has difficulty riding in the car. The optometrist diagnoses her with convergence insufficiency and diplopia. I take her for 3 other opinions including an ophthalmologist, who concurs. All agree she needs vision therapy. We begin a home therapy program for Kaitlyn. She is clearly debilitated and asking to come home after just 3 hours of school.

· February 13, 2008 VNG testing for Reagan shows the left ear has recovered to almost normal caloric activity. This is amazing in light of the toxicity of the drug gentamiacin. Meniere’s Disease appears unlikely. Reagan’s hearing in the left ear returns to the level it was on Sept. 11th. Denver neurotologist introduces the idea of migraine. I feel a need to pursue another opinion as this is a brand new idea.

· March 3, 2008 Through an e-mail to the University of Michigan, the head of the vestibular department at the Mayo Clinic hears about Reagan and calls me. Tells us that we created a separate vestibular disorder with the gentamiacin and we are in truth dealing with vestibular migraine with some adult presentation. We begin periactin and watch for trigger foods and other common migraine issues including weather changes and light sensitivity. His vertigo begins to make sense. But we are still not linking any of this to the mold exposure in May.

· March 2008 Colin complains of abdominal pain. A stomach X-ray shows that something is clearly creating a disturbance in his intestine.

· March 2008 Kaitlyn worsens. We begin vision therapy in Denver in hopes that the convergence issue will resolve and her symptoms will dissipate.

· March 2008 Our 17-year-old son Ryan’s acne has become severe. He has had chronic cold/sinus congestion/sore throat since February.

· April 2008 Kaitlyn is unable to return to school. Her motion sickness and vertigo are escalating. We see a dramatic shift in her personality. She is negative and irritable. She lies on the floor many nights and says she wants to die. The vision therapist notices a major head tilt in Kaitlyn. Suggests that there may be more going on than the convergence issue. Advises us to see a chiropractor.

· April 2008 Colin complains of numbness in his right hand. He has significant rashes on both hands. The blurry vision and headaches continue. The abdominal pain continues. He cries at night, asking if he will feel like this forever since diabetes is forever. We see a gastrointestinal specialist. He suggests stress but agrees to do further testing. Colin leaves school early most days.

· April 2008 Our 6-year-old son, Brandon, complains of blurry vision and abdominal pain. His teacher sends home a note saying he appears to be urinating frequently. Brandon is diagnosed with dysfunctional voiding. Stomach X-ray shows he is constipated.

· April 2008 I become extremely fatigued. Develop ringing in both ears. I assume this is due to stress of these last 11 months. I also begin to notice some memory issues but dismiss it quickly.

· April 2008 A pediatric neurologist at Children’s Hospital in Denver skeptically prescribes topomax for Reagan’s migranious vertigo. With no family history of migraine he expresses disbelief that a child can be dizzy 24 hours a day. With the lack of support I decide to pursue alternative/natural care. Reagan is suffering with each weather change. Because of this and Kaitlyn’s head tilt, I consider a chiropractor with a head/neck specialty.

· April 25, 2008 I reach the point of desperation and despair. Chris is doing his best to continue to pay the mounting bills. 3 children are out of school completely and are not improving. I determine to see a chiropractor with the specialty of orthospinology. As I would come to learn, orthospinology focuses on the atlas bone and its intersection with the spinal column. Misalignment inhibits the brain from sending its messages to the body, creating neurological/immune system issues. One of the primary causes of misalignment is toxic exposure.

· May 10, 2008 (the day before Mother’s day) Colin notices discoloration in his ceiling. Unaware of the dangers of mold exposure, we cut into the floor area around the master bedroom shower area and notice a mold-like substance. Assuming there is no connection with our children's illnesses from the previous mold, we call the same remediation team. They begin work the same day.

· May 16, 2008 I become increasingly uncomfortable with the remediation process. The workmen still wear no masks. Black mold is visible in the room where we are sleeping. The owner of a second remediation company comes to review the work. He is shocked at the fan which is re-circulating contaminated air through the house. There is no ventilation and black mold is clearly exposed. We call the hygienist and schedule air sampling for the following Tuesday. We tell the remediation company to remove their equipment immediately. They assure us our air in the affected areas is the cleanest in the house. Once again we hear from the insurance company that mold and slow leaks are not covered.

· May 2008 Reagan is suffering massive nosebleeds each night.

· May 2008 Chris experiences numbness in his right hand and lower arm.

· May 21, 2008 Following atlas adjustment, Colin becomes feverish and gray in color. He begins vomiting. His fever climbs to 104 degrees. Visibly shaking. Diarrhea begins. This continues for the next 4 days. There is black substance with each bowel movement. By the 5th day his abdominal pain has subsided. The numbness is gone and his vision has improved.

· May 22, 2008 The hygienist calls with the results of our air samples. The lower level of the home has a reading of 120 mold spores. The count outside our house is 790. The count in the boys’ room is 293,000. 207,000 of these spores are stachybotrys. 86,000 of these spores are the type chaetomium. The count in our master bedroom is 321,987. 250,000 are stachybotrys. 71,000 are chaetomium. The hygienist indicates he has never seen counts this high in either residential or commercial structures. The mold in this area of the house is significantly less than the area downstairs which was improperly remediated last year. The magnitude of last year’s exposure has to be much greater.

· May 22, 2008 We call for an emergency remediation. The new remediation team recommended by the hygienist contains the affected areas and seals off the rooms by midnight. They are in full protective wear. We schedule carpet steam cleaning throughout the house, and vent disinfection for the next week. Our clothing, linens, and bedding are put in sealed bags and are later disposed of. Neither the hygienist nor the remediation team suggest vacating the house.

· June 2008 Brandon’s rashes diminish following the remediation. His frequent urination is improving. I learn that frequent urination can be a sign of a low MSH (Melanocyte Stimulating Hormone). Dr. James Schaller writes, "The most common cause of a very low MSH in my patients is exposure to biotoxins."

· July 2008 I begin extensive research on the subject of Toxic Black Mold Syndrome. I read this on the website Mold-Help.org:
"The most dangerous mold strains are: Chaetomium (pronounced Kay-toe-MEE-yum) and Stachybotrys chartarum (pronounced Stack-ee-BOT-ris Shar-TAR-um) as they have been proven to produce demylenating mycotoxins among others, meaning they can lead to autoimmune disease. Under certain growth and environmental conditions, both of these fungi release toxic, microscopic spores and several types of mycotoxins that can cause the worst symptoms which are usually irreversible such as neurological and immunological damage."

· July 2008 We continue taking de-toxifying supplements. I read about the prescription medication Cholestyramine which has been proven to successfully bind biotoxins. I consider blood testing as outlined in "Your Guide to Mold Toxins." But with the children improving, I decide to wait.

· August 14, 2008 The children return to school. 2 of the children become sick the first week with cold symptoms. This is disturbing but I assume it is their compromised immune systems.

· August 18, 2008 I obtain Colin’s blood tests from May 5. I look for evidence of toxic exposure. His Gliadin IgG f is high: a level of 105.6. Anything higher than 55 indicates positive, anti-gliadin IgG antibodies which can occur after indoor mold exposure.

· September 18, 2008 Colin gets a palate expander due to the mouth breathing that developed from the swollen adenoids.

· September 29, 2008 I study Reagan’s blood tests from October 1, 2007 to search for clues to mold exposure as the cause for his hearing loss and tinnitus. (Vertigo had not set in at the time of these blood tests. They were taken 4 months after initial exposure.) His Hgb level was elevated at the time as was his Alk Phos level, which was elevated to 309 with the healthy range 37-250. In addition, his Potassium level was low and C-ANCA level was equivocal for antibodies, and a re-test was suggested by the lab but not ordered by the neurotologist.

· September 2008 Our dog Pippen seems unusually sick. His eyes are redder than they have ever been. Brandon becomes sick again with cold symptoms. I notice my tongue is black, my foot joints hurt, and 3 bumps appear on my right hand 2nd knuckle. I take Ryan to the doctor for a herpes-like rash around his mouth. Brandon’s rashes are back, as are Colin’s hand rashes. Colin’s blood sugars become elevated.

· October 4, 2008 I seek the counsel of a toxicologist due to recurring symptoms. He explains the seriousness of the 320,000 spore count and explains that mold hides behind walls and in crawl spaces. He advises us to vacate the home. We leave Saturday night at 8:45 pm.

· October 5, 2008 Chris and I conference call with toxicologist and leading environmental physician Dr. Michael Gray. They explain the seriousness of the spore count and the bacteria which synergize with the mold spores creating a general contamination in the home. We throw away all remaining clothing and begin the process of creating a new, clean, environment.

· October 25, 2008 Colin’s previous symptoms reappear. We wonder about re-contamination of the new environment. The toxicologist suggests chemical sensitivity. This commonly occurs in individuals exposed to high levels of mold. The de-toxifying capability of the body is compromised and therefore is unable to cope with normal, everyday toxins such as pesticides, fragrances, carpet chemicals, etc.

· October 29, 2008 Colin’s symptoms intensify. He complains of headaches, numbness in his hands and feet, pain in his chest and abdomen. He writes in his journal that he is the sickest boy in the world and there will never be anyone who can help him. His hands are bloody from the rashes. I call the toxicologist once again. He suggests bacteria from our contaminated house may have colonized in his nasal cavities and digestive track. X-ray reveals mass in his upper left nasal cavity. We intensify probiotic and immune boosting supplements.

· November 2008 Reagan continues to suffer from migraine headaches, chronic dizziness, sore throats, and nosebleeds. Ryan still struggles with his rash. Kaitlyn asks to leave school due to headaches. Brandon complains of dizziness and nausea. I am struggling with memory loss and depression as well as compromised ability to multi-task. I sense the need to seek medical help through Dr. Michael Gray in Benson, Arizona.

· December 3, 2008 First appointment with Dr. Gray. UV light shows numerous fungal colonies on Colin and Reagan’s bodies. He finds polyps in their nasal cavities. He explains more about the reality of our mold exposure and long-term effects. I begin to think about relocating to Arizona to have the other children seen and begin the intensive treatment protocol.

· December 2008 Our 3 oldest daughters begin to connect their long term symptoms with the mold exposure. All of them lived in the home at some point during and after the first remediation. Connections are made with symptoms beginning as far back as 2000. Symptoms include: mood disorders, thyroid issues, anemia, memory loss, depression, inability to focus, rashes, sore throats, endometriosis, hair loss, and more.

· January 2009 5 of the children and myself begin intensive treatment in Arizona. 2 more children join us mid-January. All 11 of us test positive for the presence of aflatoxins.

· February 1, 2009 Chris drives a U-Haul full of mattresses and radio equipment to Tucson. We move into a furnished rental home with the hope of recovering as a family. Within hours we have trouble breathing. Several of us develop rashes and Brandon has 3 nosebleeds. Something is wrong with the home.

· February 2, 2009 Most of us sleep outside. We hear from the owner that pesticides were recently used for termites. We vacate the home and flee to a nearby hotel. We begin a search for a safe home free of pesticides and mold.

· February 16, 2009 We move into a tiny 3-bedroom home in a remote area of Tucson. The home is new and never been sprayed. We buy air mattresses. 7 of us sleep in one room. We begin again.

· February 17, 2009 We begin the regimen of nasal sprays, supplements, diet changes, and exercise. We consider staying in Arizona for another year.

· August 14, 2009 We move into a larger 4-bedroom home, determined to continue the rigorous work required to recover.

· September 15, 2009 We receive mold testing results which show the house is clear and safe for our family. We did thorough testing upon learning of numerous plumbing/mold issues in the neighborhood.

· October 4, 2009 We "celebrate" our one-year anniversary of vacating our home. We reflect as a family on our progress and our remaining health issues.