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  • Clincial Trial Experience on Strattera

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    Old 03-18-2003, 01:03 PM   #1
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    Post Clincial Trial Experience on Strattera

    I want to share my son's experience with Strattera.

    Because I couldn't find a physician who could help my son, over the years, I got very involved in figuring out his biochemical problems.

    When my son was 8, he was diagnosed with TS, ADHD, rage tantrums, ODD, OCD, nausea and/or abdominal pains and learning disorders (visual processing, executive dysfunction, and dygraphia). His mood swings were quite dramatic, but the psychiatrist had been reluctant to add bipolar to the labels because my son was so young. I learned early on to control most of his symptoms by vitamin supplementation. As it turns out, he had a tapeworm for 5 years, picked up when we traveled in Europe. Eventually the tapeworm was passed and he needed much lower doses of vitamins to keep his symptoms at bay. By this time, his only major symptom was inattentive ADHD. I tried for nearly a year to correct this with nutritional
    supplements, but ultimately started him on different medications over a 2 year period - adderal, imiprimine, paxil, tenex, clonidine, mecamylamine, St. John's Wort - he had bad reactions, but varied to all. Because testing had revealed that my son was extremely low in norepinephrine (he made enough but metabolized it quickly), I thought that Strattera would be the ideal medication for him. I entered him into one of the clinical trials (when the med was still called tomoxetine). He weighed 70 lbs. and was getting 7.5 mg twice per day. The change in my son was spectacular - doing all his homework, lots of energy, etc. But this lasted for the first 6 to 8 weeks. Then the medication seemed to loose its effectiveness. I noticed that he was beginning to show symptoms of B6 and zinc deficiency, particularly the latter, so I increased these supplements. The physician increased the
    Strattera to 10 mg, twice daily, for a month, with no positive effect and a worsening of his B6 and zinc deficiency. After a month, the physician increased the Strattera to 12.5 mg, twice daily. I agreed to the increase only if the physician would order certain blood and urine tests for me. Ultimately these tests showed my son to be zinc deficient in his blood while he was excreting all the zinc I was giving him into his urine where the zinc levels were abnormally high. Essentially his body wasn't absorbing the zinc supplement. I didn't test for B6 directly, but only indirectly via his B6-dependent neurotransmitter levels. He was deficient in all, including serotonin, dopamine, and norepinephrine.

    These tests were done about one week before he really took a turn for the worse. He began have very intense stomach pains, waking up screaming in
    the middle of the night. He had no appetite. He acted totally intoxicated and became manic. He took to swinging knives around. Then he began to have visual and odor hallucinations. His vocal tics increased dramatically. He had a continuous licking tic that caused a red infected circle around his
    mouth. He spent hours crawling around the floor meowing like a cat. I was frantic but the clinical trial physician kept denying that this was caused by
    the medication because none of the symptoms were listed as adverse symptoms by Eli Lilly. I asked them to contact the company directly and they, too denied that their medication caused these symptoms. I took him to an ADHD expert, a physician who was not part of the clinical trial. He said the symptoms were typical of an adverse reaction to a "stimulant" mediation and so I began to wean him slowly from the medication over a period of a month. The symptoms that I just described disappeared after he was off the medication. However, he developed a new symptom that I had never witnessed before. He became extremely hyperactive, and couldn't stay focussed for more than 10 seconds. He said to me "Mom, is my brain always going to be this way now that I have taken this medicine?" I said, "Trust me, I have helped you in the past and I will figure out a way to help you again." Then I spent a week in the medical school library researching this. I was able to work out the biochemical pathways and realized why the medication had induced B6 and zinc deficiencies and then induced a type of porphyria (similar to disorder that afflicted Mad King George and Vincent Van Gogh). In the porphyria state, the body generates a chemical byproduct of the heme synthesis pathway, a chemical which belongs to the LSD family! At any rate, I gave my son high doses of all B vitamins and minerals (in their proper ratios) and within 2 weeks his brain
    returned to its more normal state. I consulted with colleagues in the pharmaceutical industry who were working on a similar compound. Not only did they know all about the negative effects of this family of compounds, but they said I got my biochemistry right. I wrote to Eli Lilly, sent them lots of documentation about my son and the scientific papers which demonstrated why their medication caused these problems. I also sent the FDA the info and filled out the FEDWATCH form, but to my disappointment, you have to go through the Freedom of Information Act to access it. To my knowledge, Lilly has never documented my son's reaction in any of their publications on Strattera. They get around it by publishing results up to 8 weeks and his bad reactions happened to my son in the 15th week. They also get around it by not listing specific adverse effects unless it happens to at least 5% of the population. The most irking factor of
    all, is that they continue to deny that my son's symptoms had anything to do with their medication, even though I videotaped him, had statements from long-term tutors about his behavior, statements from the ADHD expert physician, clinical tests, etc. Moreover, I later found a publication in a medical journal documenting mania in an adult after taking tomoxetine for nearly two years.

    YES, I know that everyone reacts differently to medications and my son may have been very unlucky with Strattera. However, unless your physician was part of the clinical trial, he/she has no experience with this medication, except for the information that is being provided by Eli Lilly. I can tell you that Eli Lilly is not revealing all of the adverse symptoms that have developed. Thus your child is something of a guinea pig, until your physician is properly trained with this new medication. And from what I know about the medication, the most severe adverse effects won't begin to show up until 6 to 8 weeks. It was bad for my son, but almost as bad for me. This medication had raised my hopes tremendously that we had finally found a solution and my son could be normal. It was such a big let-down, I was depressed for months.

    If this medication helps your child, do be grateful. If you do give it to your child, do be very observant and keep a good log. Do suspect any changes in behavior/symptoms to be due to the medication, even if your physician disagrees. And if and when you do decide to stop, do expect some type of rebound effect in which your child will be much worse for awhile.




    [This message has been edited by moderator2 (edited 03-18-2003).]

     
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    Old 03-19-2003, 09:16 AM   #2
    JeffRMom
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    Thank you very much for sharing your experience. This is really insightful and I will keep a very close eye on my son. He is in the 5th week of 2x18 mg. I wish you and your son all the best!

     
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