This is a true story. One of our children has been diagnosed with aplastic anemia. Much worse than it sounds, it’s bone marrow failure (damage), effecting all 3 blood cell types, and potentially, chr
United States of America (Press Release) June 25, 2008 --
January 2004, at the age of 15, and via a school physical to play sports, our daughter Bree was found to have proteins in the urine. That didn’t sound so bad we thought; of course until we learned that proteins in the urine were often indicative of disease. In addition to this, we were also told that she had an abnormal platelet count, (blood platelets were low 79,000). Normal is between 150- 450,000. I remember thinking, what is a platelet?
Her primary care doctor referred her to an oncologist (cancer doctor) for a follow-up. He took additional blood tests and advised he wanted to do a bone marrow biopsy. Of course he assured us that she would be just fine and that she wasn’t dying. In my heart, I knew it was the Ritalin. What else could it possibly be? She wasn’t taking anything but Ritalin. I told the doctor of my suspicion, but he denied any connection. I did not believe him. I followed my instincts and removed her from the Ritalin immediately. Side note: Concerning bone marrow, cellularity is the quality and quantity of the billions of cells the bone marrow creates per day. At Bree’s age, her cellularity should range between 60-70%, yet the bone marrow biopsy revealed a cellularity between 15-20% with patches of 1-2%. His diagnosis was ITP, (Immune Thrombocytopenia Purpura), or in other words “low blood platelets”. We were advised that it was idiopathic, meaning they didn’t know what caused it. We were further advised that it could be nothing and would repair itself, or it could be lupus, or something worse, but that he would monitor her over time.
As her mother, I researched. I went online and could find very little information about ITP and any connection to Ritalin. I did find that Ritalin was suspected of causing low blood platelets at www.itppeople.com, and I did find one reference or link of another person who was asking the question as to whether or not there was a connection to ritalin and ITP on a search engine page. Although seemingly small proof, it was enough for me. My suspicions were confirmed. From there, I started searching my drug receipts (they were in the attic with the taxes). I wanted to know if this warning was on my drug labels, I wanted to know if as a parent, I had missed something. I wanted to know if I had been warned about the possibility of this, and was negligent in my parenting regarding my child’s intake of medicine? A medicine that was supposed to help her not hurt her. I found however that none of the drug receipts or labels warned of this danger. How could this be? I later found a reference online to a PDR, the (Physician’s Desk Reference). Every doctor has one; most doctors get a new one every year. I wanted to know if there was any information about this danger in them? I had seen these PDR’s from time to time when I shopped thrift stores, and after checking a few I found one dated 1979. This medicinal manual confirmed the link and I found my suspicions were correct. The PDR from 1979 read that a severe adverse reaction to Ritalin was low blood platelets (ie. ITP). From there I began to search dates past, I wondered how long had “medicine” known this, when parents did not? I also wondered, how could her oncologist not know this? I researched Ritalin’s history and when it came to market. I found that it was marketed in 1955, and authorized for use in children in 1961. I thought surely by 2004 there were others (ie. sick children)?
I searched PDR’s everywhere I could find them, I even solicited help from ebay seller’s who were selling them, asking them to look for any reference for this possibility as far back as the 1960’s. I wanted to be sure that I was covering every possible earlier manual that I could reference. After no such information came to light earlier than the date of 1979. I assumed that this must indeed be the first date that “medicine recorded” the occurrence. From that point, I began to search forward. By 1981, the PDR listed that Ritalin was also known to cause low blood platelets and leukopenia (low white blood cells). I advised my doctor of this, but he still denied any connection. By this time, a few months had gone by and my daughter’s grades began falling from A’s and B’s to C’s and D’s since she was removed from the adhd medication. She was a freshman in high school and we were concerned. Even after feeding him the information, the oncologist told us that we could continue giving her the ritalin, but I thought he must be insane to give a child who had low blood platelets a medicine “known” to cause low blood platelets. I disregarded his dogma. I would never again give her that adhd medication, and I would warn others. I continued to research and tell others about her story.
For the next two years Bree’s blood was seemingly stable, but her symptoms were becoming more apparent. She experienced bruising and hair loss, pallor, and fatigue. She often had numerous cavities through these years and recent others. She needed permission from her doctors to go on mission trips to 3rd world countries with her youth group, and was told to stay off rollercoasters, and the like. Then in May 2006, Bree’s blood work seemed to change, and for the first time her platelets dipped below 50,000. I persisted even stronger in my research of Ritalin and in my quest to warn others, I created a handout detailing her story and some facts I had learned about Ritalin. I would pass this out to parents wherever I went. I made many phone calls to FDA Medwatch, wrote letters, requested research and FDA databases of information regarding severe adverse reactions. Sifted through numerous cases involving ADHD related drug severe adverse reactions and grew ever more suspicious to what was going on surrounding these drugs and they’re dangers, until one day I stumbled upon a 1991 RX family drug guide. I turned to the page where Ritalin / methylphenidate was listed. In the severe adverse reaction section about Ritalin, it read that it “was known to cause, low blood platelets, low white blood cells, and low red blood cells.” Now that was a pancytopenia, a decrease in all three blood cell types. What organ creates blood cells? The bone marrow. It didn’t take a rocket scientist to see the links, and understand the danger. I called her oncologist and again related the link to Ritalin. He unbelievably again denied the connection, at which point I told him he wasn’t fit to care for my daughter anymore. He advised that based on her condition he would normally refer her out at this point anyway, and he made a referral advising of some good doctors he knew of. Because I didn’t trust him, I wanted to check them out. So I called, and spoke to their office manager, and learned that maybe this team would be good for Breanna. It was a team of four doctors who were triple-board certified in pediatrics, hematology and oncology.
Upon review of Bree’s case, her new doctors wanted to perform a second bone marrow biopsy. This completed; we were told that Bree had “aplastic anemia.” We had never heard of it. We had a brief discussion about “aplastic anemia” and that it was “bone marrow failure,” and sometimes resulted in a bone marrow transplant or immune suppression therapy. I asked, “so this is progressively getting worse then?” He examined her first bone marrow biopsy report and said “I don’t know where the diagnosis of ITP came from, but considering her cellularity from that test, we would have diagnosed her with aplastic anemia.” We were floored. An additional 10 tubes of blood were taken and sent throughout the country to rule out pre-existing genetic tendencies towards disease. We were sent home with a “parent handout” about “aplastic anemia”. We later read in that handout that sometimes aplastic anemia was a precursor to leukemia. Later blood testing would confirm that ALL pre-existing genetic tendencies for disease was negative in Breanna. Therefore technically, Bree had “secondary aplastic anemia,” meaning it was acquired, from something.
Upon researching aplastic anemia online, I began seeing many references to benzene, a known carcinogen (cancer causing agent), known to cause aplastic anemia, and also known to cause leukemia. I wondered if this ingredient was in Ritalin? I researched further. I began to dissect the “known” ingredients of ritalin, and specifically PEG, polyethylene glycol, and derivatives of the chemical, broken down, ethylene, ethyl, ether, also in motor fuels and oils, rocket fuel, plastics, rubbers, anti-freeze, etc… I saw a real close cousin to benzene in all of this. I wondered why was this ingredient in all of these “non-digestible” things, and also in my child’s medicine? I thought “3 times a day, for nearly 8 years, my child ingested this medicine,” no “medicine breaks”, no “drug vacations”, and no “drug holidays, as they are so want to create today.” I was outraged. I was angry. I was heartsick. I felt that I had poisoned my own child. Should I bury my head and let no one know? Remain ashamed, segregated and distraught? No. I would raise my head and speak boldly. Big Pharma doesn’t know it yet, but they just ticked off the wrong woman. If it takes the rest of my life, I will make sure there is recompense felt in their pocketbooks. No child, or parent should have to go through this. Side note: Who created the term “drug holidays” and why? The body is a remarkable machine, and has great security systems. Could it be these drug holidays will “slow down” toxicity, giving the body time to repair it’s engine?
Her primary care doctor referred her to an oncologist (cancer doctor) for a follow-up. He took additional blood tests and advised he wanted to do a bone marrow biopsy. Of course he assured us that she would be just fine and that she wasn’t dying. In my heart, I knew it was the Ritalin. What else could it possibly be? She wasn’t taking anything but Ritalin. I told the doctor of my suspicion, but he denied any connection. I did not believe him. I followed my instincts and removed her from the Ritalin immediately. Side note: Concerning bone marrow, cellularity is the quality and quantity of the billions of cells the bone marrow creates per day. At Bree’s age, her cellularity should range between 60-70%, yet the bone marrow biopsy revealed a cellularity between 15-20% with patches of 1-2%. His diagnosis was ITP, (Immune Thrombocytopenia Purpura), or in other words “low blood platelets”. We were advised that it was idiopathic, meaning they didn’t know what caused it. We were further advised that it could be nothing and would repair itself, or it could be lupus, or something worse, but that he would monitor her over time.
As her mother, I researched. I went online and could find very little information about ITP and any connection to Ritalin. I did find that Ritalin was suspected of causing low blood platelets at www.itppeople.com, and I did find one reference or link of another person who was asking the question as to whether or not there was a connection to ritalin and ITP on a search engine page. Although seemingly small proof, it was enough for me. My suspicions were confirmed. From there, I started searching my drug receipts (they were in the attic with the taxes). I wanted to know if this warning was on my drug labels, I wanted to know if as a parent, I had missed something. I wanted to know if I had been warned about the possibility of this, and was negligent in my parenting regarding my child’s intake of medicine? A medicine that was supposed to help her not hurt her. I found however that none of the drug receipts or labels warned of this danger. How could this be? I later found a reference online to a PDR, the (Physician’s Desk Reference). Every doctor has one; most doctors get a new one every year. I wanted to know if there was any information about this danger in them? I had seen these PDR’s from time to time when I shopped thrift stores, and after checking a few I found one dated 1979. This medicinal manual confirmed the link and I found my suspicions were correct. The PDR from 1979 read that a severe adverse reaction to Ritalin was low blood platelets (ie. ITP). From there I began to search dates past, I wondered how long had “medicine” known this, when parents did not? I also wondered, how could her oncologist not know this? I researched Ritalin’s history and when it came to market. I found that it was marketed in 1955, and authorized for use in children in 1961. I thought surely by 2004 there were others (ie. sick children)?
I searched PDR’s everywhere I could find them, I even solicited help from ebay seller’s who were selling them, asking them to look for any reference for this possibility as far back as the 1960’s. I wanted to be sure that I was covering every possible earlier manual that I could reference. After no such information came to light earlier than the date of 1979. I assumed that this must indeed be the first date that “medicine recorded” the occurrence. From that point, I began to search forward. By 1981, the PDR listed that Ritalin was also known to cause low blood platelets and leukopenia (low white blood cells). I advised my doctor of this, but he still denied any connection. By this time, a few months had gone by and my daughter’s grades began falling from A’s and B’s to C’s and D’s since she was removed from the adhd medication. She was a freshman in high school and we were concerned. Even after feeding him the information, the oncologist told us that we could continue giving her the ritalin, but I thought he must be insane to give a child who had low blood platelets a medicine “known” to cause low blood platelets. I disregarded his dogma. I would never again give her that adhd medication, and I would warn others. I continued to research and tell others about her story.
For the next two years Bree’s blood was seemingly stable, but her symptoms were becoming more apparent. She experienced bruising and hair loss, pallor, and fatigue. She often had numerous cavities through these years and recent others. She needed permission from her doctors to go on mission trips to 3rd world countries with her youth group, and was told to stay off rollercoasters, and the like. Then in May 2006, Bree’s blood work seemed to change, and for the first time her platelets dipped below 50,000. I persisted even stronger in my research of Ritalin and in my quest to warn others, I created a handout detailing her story and some facts I had learned about Ritalin. I would pass this out to parents wherever I went. I made many phone calls to FDA Medwatch, wrote letters, requested research and FDA databases of information regarding severe adverse reactions. Sifted through numerous cases involving ADHD related drug severe adverse reactions and grew ever more suspicious to what was going on surrounding these drugs and they’re dangers, until one day I stumbled upon a 1991 RX family drug guide. I turned to the page where Ritalin / methylphenidate was listed. In the severe adverse reaction section about Ritalin, it read that it “was known to cause, low blood platelets, low white blood cells, and low red blood cells.” Now that was a pancytopenia, a decrease in all three blood cell types. What organ creates blood cells? The bone marrow. It didn’t take a rocket scientist to see the links, and understand the danger. I called her oncologist and again related the link to Ritalin. He unbelievably again denied the connection, at which point I told him he wasn’t fit to care for my daughter anymore. He advised that based on her condition he would normally refer her out at this point anyway, and he made a referral advising of some good doctors he knew of. Because I didn’t trust him, I wanted to check them out. So I called, and spoke to their office manager, and learned that maybe this team would be good for Breanna. It was a team of four doctors who were triple-board certified in pediatrics, hematology and oncology.
Upon review of Bree’s case, her new doctors wanted to perform a second bone marrow biopsy. This completed; we were told that Bree had “aplastic anemia.” We had never heard of it. We had a brief discussion about “aplastic anemia” and that it was “bone marrow failure,” and sometimes resulted in a bone marrow transplant or immune suppression therapy. I asked, “so this is progressively getting worse then?” He examined her first bone marrow biopsy report and said “I don’t know where the diagnosis of ITP came from, but considering her cellularity from that test, we would have diagnosed her with aplastic anemia.” We were floored. An additional 10 tubes of blood were taken and sent throughout the country to rule out pre-existing genetic tendencies towards disease. We were sent home with a “parent handout” about “aplastic anemia”. We later read in that handout that sometimes aplastic anemia was a precursor to leukemia. Later blood testing would confirm that ALL pre-existing genetic tendencies for disease was negative in Breanna. Therefore technically, Bree had “secondary aplastic anemia,” meaning it was acquired, from something.
Upon researching aplastic anemia online, I began seeing many references to benzene, a known carcinogen (cancer causing agent), known to cause aplastic anemia, and also known to cause leukemia. I wondered if this ingredient was in Ritalin? I researched further. I began to dissect the “known” ingredients of ritalin, and specifically PEG, polyethylene glycol, and derivatives of the chemical, broken down, ethylene, ethyl, ether, also in motor fuels and oils, rocket fuel, plastics, rubbers, anti-freeze, etc… I saw a real close cousin to benzene in all of this. I wondered why was this ingredient in all of these “non-digestible” things, and also in my child’s medicine? I thought “3 times a day, for nearly 8 years, my child ingested this medicine,” no “medicine breaks”, no “drug vacations”, and no “drug holidays, as they are so want to create today.” I was outraged. I was angry. I was heartsick. I felt that I had poisoned my own child. Should I bury my head and let no one know? Remain ashamed, segregated and distraught? No. I would raise my head and speak boldly. Big Pharma doesn’t know it yet, but they just ticked off the wrong woman. If it takes the rest of my life, I will make sure there is recompense felt in their pocketbooks. No child, or parent should have to go through this. Side note: Who created the term “drug holidays” and why? The body is a remarkable machine, and has great security systems. Could it be these drug holidays will “slow down” toxicity, giving the body time to repair it’s engine?
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