Comments on: Frances Jensen on 60 Minutes: Why funding epilepsy research is important

By: Ann

Ann — Tue, 24 Nov 2009 02:09:17 +0000

Thank you so much for bringing this to light. Our 5 YO son was diagnosed with juvenile epilepsy in Sept, and has since responded very well to meds. It was a scary time for us, but luckily, we found an amazing dr – We are so blessed to live so close to world reknown physicians. It is clear just how lacking the funding is for this disorder, and how misunderstood it still is.
To Michelle, I am so sorry to hear of you troubles in reaching a diagnosis. Have you thought of video taping his episodes? We were able to capture a few of my sons’ just before we received our diagnosis. The neuro we worked with found it helpful to see the actual event, rather than have us describe it to him. We also had luck in inducing the seizures in a clinical setting, so for us, the diagnosis was clear and easy. Best of luck, and if you aren’t finding the answers you need, don’t be afraid to advocate for your son and pursue other opinions. God bless.

By: Jody Carhart

Jody Carhart — Sat, 07 Nov 2009 00:25:07 +0000

My daughter, Tina, died at age 7 from epilepsy. We tried 17 anti-epileptic medicines, the vagus nerve stimulator implant, the multiple subpile transection brain surgery, and the ketogenic diet. We tried it all to save our daughter, but couldn’t. Not enough research and cures out there yet. Because of this, we lost our most precious gift. I hope they find a cure soon so other parents don’t have to go through the pain that we have to live with everyday.
Jody Carhart

By: Ginny Miller

Ginny Miller — Wed, 28 Oct 2009 02:30:58 +0000

To answer the original blog questions, my son has suffered from epilepsy since he was a young child. He has been through bullying because of his epilepsy as well as misdiagnosis having his medications and diagnosis removed. He and others with epilepsy DESPERATELY need the research that Dr Jensen spoke about. His seizures are intractable or resistant to medications. He also suffers from severe depression, co-morbid to his epilepsy. We are fortunate to have been close enough to Children’s hospital for his care, but even then his treatment has been extremely challenging. He attempted suicide due to a seizure medication and circumstances of his misdiagnoses and life circumstances at age 15. We are fortunate his 2 attempts were not successful and that the Psychiatric team at CHB was so wonderful!! We did not have anything available in our state to help him for neuro or psych help. I owe my son’s life to CHB.

We need more help for Epilepsy and have worked very hard for advocacy.

I also was diagnosed with epilepsy a few years ago.

3 Million Americans have epilepsy and need new medications to fight this disorder. We also need to break the stigma that surrounds this condition. Better treatments, better diagnostic methods, better understanding for the general public.

By: Robin

Robin — Tue, 27 Oct 2009 23:42:48 +0000

I believe the more exposure that this disorder gets the better. What I don’t want to see happen is for people to continue to believe that medication and surgery is the only answer. My daughter began having seizures at the age of 14. We tried conventional medical recommendations and her seizures increased to 6/mo. Side effects were unacceptable. Now a month away from being 18 she is close to being controlled. We have done this by making nutritional changes, neurofeedback, and supplementing vitamins and minerals for brain and body health.
What I see as a fault with conventional approaches, is that the doctors that we were referred to were so specialized that they did not see the big picture, the health of the whole body. Not one was willing to move into another doctors specialty, and rarely would conference with the other. I am sure there are legal reasons for this, but it is quite maddening.
There are some wonderful successful therapies that are being ignored because they do not have the backing of a Pharma company, or the $ to put out the type of studies that are recognized as being believable.
My home calendar journal proves that the choices made on our duaghters behalf have made a positive improvement in the quality of her life. However, this was learned outside of mainstream medical offices.
If there is new research I do hope they look into these directions as well.

By: Matt Cyr

Matt Cyr — Tue, 27 Oct 2009 22:54:23 +0000

Hi Michelle,
I’m sorry for all the troubles you’re having. Where do you live?
Thanks for your comment.
Matt

By: MIchelle

MIchelle — Tue, 27 Oct 2009 22:04:06 +0000

My husband and I adopted our son, whom was drug exposed, at 5 mos. old. He started experiencing absence or staring seizures when he was 1 years old. All tests have shown no cause for the seizures, which have been witnessed by family and his special ed. teacher, but not his neurologist. Our son is now 3, borderline mentally retarded, still experiencing seizures and is cognatively at a level half his age. His neurologist still will not give him a diagnosis of epilepsy although he did put him on Keppra a month ago. Is this normal for a neurologist to not believe a parent? He thinks that his “seizures” are caused by autism, however, three psychologists have told us that our son does not have autism. We are so frustrated and scared for our son. He is slipping through the cracks. Our Regional Center just dropped him from the program because his neurologist wouldn’t give a definitive diagnosis.

By: [Research] Pediatric Epilepsy Research - Epilepsy Forum

[Research] Pediatric Epilepsy Research - Epilepsy Forum — Tue, 27 Oct 2009 21:19:30 +0000

[...] a public health problem, limiting the scope for research." For further information, click on: http://childrenshospitalblog.org/fra…ant/#more-2392 and http://childrenshospitalblog.org/fra…-is-important/ [...]

By: Kasey McFate

Kasey McFate — Tue, 27 Oct 2009 20:35:23 +0000

My daughter Annaleigh McFate was diagnosed with epilepsy when she was 17 months old. We do not have a cause as to why she began having seizures. Anna has complex-partial seizures. A few months after she was diagnosed with epilepsy we formed a virtual walk with the National Epilepsy Walk of 2008. We were able to raise $2,800 for the National Epilepsy Foundation. Our community was very supportive and people who don’t have epilepsy or know someone who does still walked to show their support. It was great. Annaleigh is now 3 1/2 and averaging 1 seizure every 6 weeks. Her doctor has suggested she get a seizure response dog. Which has come with a whole new set of problems, which we are working out. It is very difficult to see your child having a seizure and there is nothing you can do to stop it. You feel helpless. If there is anything I can do to help people who suffer from this I will step up to the plate. I am a H.O.P.E. mentor (helping other people with epilepsy, and my family will walk every year there is an epilepsy walk to not only show support but to hopefully find a cure soon. We have also started a support group in Tupelo, MS.