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Neurology (Expert Forum)
Re: Dilantin Home Testing
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Re: Dilantin Home Testing
by CF-Neuro-MD, Jan 01, 1995 12:00AM
Posted By CCF Neuro MD# on February 21, 1998 at 10:55:19:
In Reply to: Dilantin Home Testing posted by Suzi on February 21, 1998 at 08:44:52:
: Last year, I suffered a near-fatal seizure. Fortunately, my son found me and called 911, who saved my life. The seizure resulted from a drop in my dilantin level, probably due to the fact that I had a virus for more than a week. After I got out of the hospital, my doctor tried to switch me to tegretol, but I had too many side effects. Then neurontin, then topamax. I could not tolerate any of them. So I am back on dilantin, which for me, provides the best seizure control with the fewest side effects, as long as my levels stay within a certain range.
My dilantin level seems to go up and down "for no apparent" reason quite often. I was told this is probably due to hormonal changes. I believe this problem could be virtually eliminated and last years seizure could have been prevented if there was a dilantin home test kit, similar to the glucometer to diabetics. I have learned that it is quite common for a patient's dilantin levels to fluctuate. That being the case, I am puzzled as to why a dilantin test kit has not been developed by now. It could act as an early warning system alerting a patient to contact his/her doctor if any significant changes are noticed.
I have recently started a grass roots organization in pursuit of such a test. Our efforts have triggered feasibility studies by 2 companies which are currently underway. I would appreciate any suggestions or information you can provide that might help us in our pursuit. If you would like to contact me to join this effort, please do so at my email: ***@****. We are not seeking financial support. We operate out of our own household budgets. We are just looking for people who are willing to write emails to the appropriate people who might be able to help us. Please let me know what you think about this.
Susan Cross
I wish you luck with your campaign, it would appear that if you have
got to the stage of feasibility testing in two companies you are well
underway.
One of the reasons this has not been available so far is that accurately
testing a protein bound drug is technically much more difficult than a
simple molecule like glucose but hopefully this will eventually be
possible and a cheap reliable reproducible test will become available.
I performed a ten year literature search on his topic and found one reference
(cited below ) to a group which is testing a similar product.
Rambeck B. May TW. Jurgens MU. Blankenhorn V. Jurges U. Korn-Merker E. Salke-Kellermann A.
Department of Biochemistry,
Gesellschaft fur Epilepsieforschung e. V., Bethel, Germany.
Comparison of phenytoin and carbamazepine serum concentrations measured
by high-performance liquid chromatography, the standard TDx assay,
the enzyme multiplied immunoassay technique, and a new patient-side
immunoassay cartridge system.
Therapeutic Drug Monitoring. 16(6):608-12, 1994 Dec.
You may wish to obtain the article and possibly contact the company
In Reply to: Dilantin Home Testing posted by Suzi on February 21, 1998 at 08:44:52:
: Last year, I suffered a near-fatal seizure. Fortunately, my son found me and called 911, who saved my life. The seizure resulted from a drop in my dilantin level, probably due to the fact that I had a virus for more than a week. After I got out of the hospital, my doctor tried to switch me to tegretol, but I had too many side effects. Then neurontin, then topamax. I could not tolerate any of them. So I am back on dilantin, which for me, provides the best seizure control with the fewest side effects, as long as my levels stay within a certain range.
My dilantin level seems to go up and down "for no apparent" reason quite often. I was told this is probably due to hormonal changes. I believe this problem could be virtually eliminated and last years seizure could have been prevented if there was a dilantin home test kit, similar to the glucometer to diabetics. I have learned that it is quite common for a patient's dilantin levels to fluctuate. That being the case, I am puzzled as to why a dilantin test kit has not been developed by now. It could act as an early warning system alerting a patient to contact his/her doctor if any significant changes are noticed.
I have recently started a grass roots organization in pursuit of such a test. Our efforts have triggered feasibility studies by 2 companies which are currently underway. I would appreciate any suggestions or information you can provide that might help us in our pursuit. If you would like to contact me to join this effort, please do so at my email: ***@****. We are not seeking financial support. We operate out of our own household budgets. We are just looking for people who are willing to write emails to the appropriate people who might be able to help us. Please let me know what you think about this.
Susan Cross
I wish you luck with your campaign, it would appear that if you have
got to the stage of feasibility testing in two companies you are well
underway.
One of the reasons this has not been available so far is that accurately
testing a protein bound drug is technically much more difficult than a
simple molecule like glucose but hopefully this will eventually be
possible and a cheap reliable reproducible test will become available.
I performed a ten year literature search on his topic and found one reference
(cited below ) to a group which is testing a similar product.
Rambeck B. May TW. Jurgens MU. Blankenhorn V. Jurges U. Korn-Merker E. Salke-Kellermann A.
Department of Biochemistry,
Gesellschaft fur Epilepsieforschung e. V., Bethel, Germany.
Comparison of phenytoin and carbamazepine serum concentrations measured
by high-performance liquid chromatography, the standard TDx assay,
the enzyme multiplied immunoassay technique, and a new patient-side
immunoassay cartridge system.
Therapeutic Drug Monitoring. 16(6):608-12, 1994 Dec.
You may wish to obtain the article and possibly contact the company
