Cyndi Hamilton-Weihert and her family try to raise public awareness of the serious nature of multiple chemical sensitivities.
It’s a particular pleasure to share our personal story with Latitudes, because one of your advisory board members, Dr. Marshall Mandell, is the physician who rescued us from despair.
Ken is now 18. Over four years ago he experienced a ten-minute seizure at home. Seizures then began daily at school, and we were launched on a quest to find medical help.
He’d previously been a healthy, productive, and energetic young man, but over the next year and a half the seizures continued to occur frequently, and they lasted for periods of up to one hour. Meanwhile, Ken received a diagnosis of epilepsy and migraines. That diagnosis was later dismissed and replaced with “pseudo-seizures.” Pseudo-seizures are reportedly due to traumatic experiences in the past. Our problem with that diagnosis was that Ken hadn’t had any major emotional or physical traumas! We traveled to research centers throughout Florida and Georgia, but the experts had no good answers. We were frustrated and scared.
I remember once getting a call from the school, “Your son is having another seizure. It’s the worst we’ve seen. My God, I think we are losing him. We’ve called 911. Meet him at the hospital.” Calls such as this plagued our lives. Seizure-control medications were of no help. EEGs, MRIs, and drug testing yielded no clues. Time spent in counseling and hypnosis brought him no closer to a cure. The illness began to consume our lives.
Ken does not remember the episodes nor the pain that surely accompanied them. When a seizure started, he would appear to be sinking into unconsciousness as his arms and legs began thrashing. His breathing became shallow and rigid, eyes rolled upward, and as he clenched his teeth his tense facial muscles distorted his appearance. We watched in agony and in prayer, helpless to make real contact with his world of temporary darkness. Once the worst was over and signs of consciousness began to flicker, he would return to us, too exhausted to speak. After a lengthy sleep, he would awaken to muscles that ached with every movement.
A local newspaper ran a story about Ken and his mysterious seizures, which had increased in frequency and had occurred every day for over two weeks straight. The next day the phone rang and the reporter who wrote Ken’s story for the Sarasota paper informed us that a physician by the name of Dr. Mandell had read about Ken and wanted us to contact him because he thought he might be able to help us. There would be no charges for his professional services.
I phoned Dr. Mandell, and the friendly voice at the other end of the line gave us our first real hope. Though retired since 1993 and no longer in office practice, Dr. Mandell suggested that Ken could be reacting to foods, allergens, and/or chemicals in his environment.
After some prodding questions that pinpointed the conditions surrounding Ken’s seizures, Dr. Mandell suggested that the school environment was triggering them, and the biology class in particular. On Dr. Mandell’s advice, Ken avoided biology class for four days and instead did his school work in the library, located away from the biology wing. There were no seizures on those days. (We were astonished!) Then, on the fifth day, Dr. Mandell asked that Ken return to biology class. This brought a seizure on once more, and we were on our way to finding the actual cause of his seizures. We eventually tracked the problem down to carpets and adhesives, and the odors of formaldehyde and alcohol in the biology lab.
I began a study of the condition known as multiple chemical sensitivity. It became clear to us that association with perfumes, chlorine, and pesticides made Ken feel weak. Even after the seizures stopped, I noticed that on some days he would lose concentration, his speech would slur, and his hands trembled when exposed to common environmental chemicals. We have adjusted our home and Ken’s diet to avoid exposure to adverse chemicals, and his health is slowly improving — but Ken has not been able to return to the uncontrolled school environment, so he is pursuing a high school GED.
I would like to be able to report that school officials cooperated with us, believed us, and did something to help Ken. But that has not been the case. They didn’t believe us and neither did the doctors we consulted with. Fortunately, we received numerous follow-up calls from Dr. Mandell. He has been our lifeline, our guardian angel. There has only been one seizure since Ken left the school, and that occurred when he was exposed to a large quantity of chlorine on a job. Ken now receives detoxification therapy and he carefully avoids chemical exposures. We are hopeful that one day he will lead a normal life. That’s all he wishes for. This has been a lonely road for us as a family, and we have felt isolated by the ignorance of a mainstream medical profession that scoffs at the concept of multiple chemical sensitivities. They do exist, and they do affect the nervous system and the brain.
Editor: Dr. Marshall Mandell has 40 years of clinical experience and research in the field of allergy. After reviewing this article he commented, “I have used more than one and a half million symptom-duplicating provocation tests for various types of internal sensitivities. Allergic and allergy-like reactions are a major factor in many kinds of illness, and it’s critical that the medical profession become familiar with the diagnosis and treatment of this problem. Multiple chemical sensitivities (MCS) can have a serious effect on the nervous system as well as on other body systems. Unfortunately, the close-minded educational system and the mainstream medical profession reject the concept of MCS. As a result, millions of individuals suffering from physical and mental disorders are misdiagnosed and incorrectly treated.”