Agony, Hope & Resolve

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

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.

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.

My deepest gratitude to Newsweek, Mr. Meacham and the Axelrod family for helping to bring information about epilepsy into the spotlight. I had my first gran mal seizure at age 43 after having undiagnosed partial seizures for probably many years. I entered a world that continues to break my heart and test my ability to maintain hope. In order for doctors to understand my seizures I spent eight days on a hospital research unit with 25 electrodes on my head and continuous video monitoring. During this time I met people who have suffered their entire lives with this affliction and have felt a loneliness and isolation and even abuse that can not be fully understood unless you've been there. Epilepsy is a medical condition that still is in the Dark Ages of medicine. Hopefully this excellent reporting in Newsweek will increase understanding and medical research. I feel blessed to have my seizures controlled for about eight yesrs by the same medication that helped Ms. Axelrod (along with other meds). Yet not a day goes by that I am not dealing with medication side effects or the thought of another seizure occurring. I am privileged to stand with all those who have epilepsy and together we ask to be accepted and given the same respect and understanding afforded to other medical maladies. Epilepsy is something that we live with but it does not define who we are. And there is always hope, for God is faithful!
Marilyn in MN

David, I have misjudged you, I am sorry.

Susan, I wish I could speak with you.

Thank you so much David and Susan and Lauren!

David and Susan and Lauren, you opened up a story that needs to be told. Thank you for your testimony!

To all who have relatives who have this condition, it can be quite unpleasant, I know. Please hold your heads up high as you will be next to Christ in the hereafter!

My 5 yr old son has had epilepsy since he was 3. For the first 6 months his pediatrician thought he just had sinus congestions...even though we repeatedly told them it didn't make since. Finally a new pedia suggested an EEG and we founf out. He only has nocturnal seizures and they've been difficult to control with antiseazure medicines. Needless to say my wife and I get maybe a total of 3 hours sleep at night. We are always checking on him, we actually sleep in a bed next to him and jump at any noise he makes. Our whole quality of life has changed.
The past 2 years we've felt alone and hopeless. We actually cried when we saw this issue. THANK YOU NEWSWEEK!!!
Thank you Susan and David Axelrod. You are our beacon of hope. God bless Lauren.

What happened to the e-foundation's Out of the Shadows campaign?

I have been taking this ride for over 10 years. Let me say that being able to function enough to execute required tasks is a beautiful thing. On the other side it is quite ugly when you can't. This condition/disease is best explained my experiences is much like when a computer crashes or has a virus. The virus can ride along until proper trigger is received. At that point it is anyones guess the level of intrusion and the residuals that follow. After several SE episodes you wish you could change the hard drive or the operating system or even get a new computer. It does not work that way for the brain and its trigger unfortunately. So it is up to the patient, family, and medical/health and support personnel to find the fix.To me, a person who suffers the effects this is a long time coming, it is my hope this does not fall through the cracks. To create hope is important but to get results is the prize. Also for those who haven't experienced this storm or taken the ride with someone close, this story only scratches the surface on what the ride is really like. I want to thank the Axelrods and Mr. Meacham for their time and energy on this curse.

Thank-You God that someone has finally gotten this out in the open public for discussion! I only hope that more of those in the public eye can read and will read this. Unless you've been affected, you can't imagine what the stigma is like. My son was diagnosed 4 years back, has been through at least 8 medications and countless procedures. He will NEVER drive a car, pick up a date for the prom, and may never find an employer willing to take on his unique situation. As a parent, I would give up the remainder of my life this second if it could possibly help him. We have to mobolize, we have to talk, and if necessary scream until someone hears our cries. This has to move up the ladder to the uppermost portion of the government. Disability is being denied victims on a daily basis. Can't everyone see how outright disabling this affliction is? Thanks to everyone leading this movement ! My heart aches for all of those aflflicted and the families whom are spending billions in this broken economy seeking peace. Thanks Axlrod's, thanks CURE, thanks Epilepsy Foundation!

I am very sad to hear of the Axelrods' struggle with their daughter's condition. While boring holes in someone's skull may sound horrific, for many people it has led to surgery that has helped manage or even eliminate their seizures. It turned out surgery wasn't an option for Lauren, but it could be helping many more people if there wasn't stigma around the procedure.

What a thrill it was to see that seizures were the cover story for Newsweek. Let's hope it brings the ghost out of the closet and money is poured forth for research. Unless people are open about it and money is donated, no advancements will be made.

Get a lawyer for your daughter's disability hearing. Often it is your doctor's word against the govt's doctors, and you are not even aware of it. The lawyer will know how to build a record. It doesn't cost anything unless you win, and it is worth it. I say that as a lawyer who hired a lawyer.

There is nothing like standing at a mall and seeing an ambulance come at you with lights flashing....and not knowing if it is for you....because you don't remember. I haven't left the house alone for 5 years because of that incident.