Agony, Hope & Resolve

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  Posted By: rsousamd @ 05/08/2009 5:52:52 AM

  Dear Mrs. Axelrod,
  I was touched by your daughter Lauren's stoty and your personal family experience. I was also deeply moved and inspired by all the articles about Epilepsy and seizures and the determination and pasion that families like yours and doctors like Orrin put into the common effort of finding the cure. It was like hearing for the first time the voice of a trapped person coming out of the rubble after several days of search, filled with hope that everybody else would listen and help dig him out. Because of the economical crisis and coincidentally the 'programmed death" of brand name medications, like Keppra, and the replacement of such for generic "equivalents", the "magic bullet" will be no more. The impact of these substitutions is unmeasurable, specially for the patients who responded well to the brand name medication and suddenly began having breakthrough seizures because of it, some even presenting on "status epilepticus". Patients like Lauren that had been seizure free, could begin to have seizures on generic antiepileptic medications and we know that in a large number of cases, once it recurrs, the seizures may be refractory to the usual therapy, often needing more than one drug, and sending everything back to square one, not even taking in consideration that in attempts to save money, the insurance companies would inadvertently increase the global economical burden of disability that these patients will impose with ER visits, hospitalizations, etc. It is once more that the voice of many is needed so somebody can rescue the desperate, specially the ones with no choice, since they don't have money to pay for the brand name and the insurance companies would not approve them, even if doctors spend countless hours trying to obtain authorization instead of spending time seeing patients, some which already waited many months to be seen. I praise Dr. Devinsky and his team for being such a loud voice as well as all the contributors for the Epilepsy edition. I hope we can be heard in congress about this issue, which has the potential to be disastrous.
  Rolando Sousa, MD. Pediatric Epileptologist. NY/NJ

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  Posted By: kpj2jlj2 @ 05/05/2009 12:10:32 PM

  My now 8 year old son started having absence seizures at 18 months of age. We averaged 4-5 trips to the ER per year and countless more f/u appts at the Dr. office before he was finally diagnosed via EEG, at my assistance, at the age of 6. When we finally got to the neurologist, I asked about the 14 month old daughter I was holding, and was assured that there was virtually no possibility that she would also be afflicted. 4 months later, we were back, with a positive EEG and researching medications for an 18 month old.
  
  We have been through several medications, allergic reactions ... Brand Names becoming Generic resulting in PURE MAYHEM.
  
  The teachers do NOT understand ... and the PURISTS tell me that I am poisoning my children with medication. I see it as a simple choice ... quiet peaceful children who are mostly unconscious ... that might die .... or two overly active, very happy, children, who will live ... but we just have to accommodate their needs for sleep, and activity ... who need extra guidance in their interactions.
  
  Even though I am 99% opposed to the politics in practice by those who are bringing this issue to light ... I am grateful to them, that they are in a position to speak on the issue and are doing so.

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  Posted By: rosea2720 @ 04/27/2009 12:55:29 PM

  What an Enlightened article in Newsweek regarding Epilepsy. My 14 yr. old daughter had her first Grand Mal when she was 9. Since then it has been an uphill battle that just recently & cautiously we feel we have the right combo to control her seizures. More than that though, I want to thank you for bringing up the daily struggles of side effects from the meds or mini episodes that have affected her daily life,especially in school. While my daughter is very upbeat, a good academic & athletic student, I will be bringing the mag into her school for the guidance counselor to read so that she might enlighten other teachers so they have a better understanding of her mood swings (which at 14 I have trouble distinguishing between)or times that she tells them she "just does'nt feel right". We have never used Epilepsy as a crutch for my daughter but would appreciate a little more understanding on the schools part.