Article Source: msnbc.com
from:msnbc.comAfter their 4-year-old son died, a Chicago family successfully pushed for research for a device to detect seizures
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A tragic but beautiful story. It is amazing the good that one family can do in the world. What an example for all of us.
Why is there not an address in the story? People need to take a lot of vitamin B-6 to avoid these seizures. I dveloped Panic Disorder because of the attacks. I saw on MYSTERY DIAGNOSIS that this Doctor cured a little girl in a few weeks by IV Vitamin B-6. I have been taking one or two a day for a few months now. I also eat more sweets. My Blood Sugar was dropping to 35 in tests before I developed the siezures and the Panic Disorder. Pass this onto others. Thanks, Rex R. Bahr 75 Y/O, of Portland Oregon USA
Vitamin B-6 has been said to help with mood swings for people who are taking the anti-seizure med Keppra. It does not prevent seizures, to state otherwise is to confuse people.
Pharmeceuticals such as Kepra and Lamictal may be newer to the field, but they might as well be as archaic as phenytoin sodium. The field simply lacks reasonable minds IMHO, and constantly increasing pressures of an FDA combined with lack of funding for research makes for such an uphill struggle that we might as well be launching spitballs toward the next solar system for our space program research to match what goes on in the field of epilepsy.
Doctors shouldn't be withholding information like this from patients and their families. That kind of behavior smacks of a paternalistic attitude that is outdated and potentially dangerous (as this case shows.)
I cannot even imagine the parents' grief.
May God give them the strength to go on.
My local library has two packed shelves on autism, but only ONE thirty-year-old book on epilepsy--and it's a cookbook. I'm for anything bringing awareness to epilepsy, because there does not seem to be anything out there right now, our local Epilepsy Foundation is laying people off and having trouble paying their rent.
That being said, I will not let my teenager with epilepsy read this article. She needs to be doing her homework over the holidays, not worrying if she'll wake up tomorrow. There needs to be some balance in articles about epilepsy, like how 3 million Americans are living with epilepsy.
Here I am again. It's an incredible shame that there are only seven comments on this fine article, and three of them are from me, a parent of a child with epilepsy. I wish this article had been run during November, which is Epilepsy Awareness Month. We are finding that there is NO awareness out there, outside of the epilepsy community. We have also found that people, even those who should know basic first aid, such as doctors, nurses and teachers do not know what seizures look like or how to respond.
Keep at it, Danny's (and the three other kids') parents, a rising tide lifts all boats, so I'm told. Epilepsy is really "seizure spectrum disorder", no two people are alike. My daughter is hoping for a celebrity to speak out, someone like a Michael J. Fox for Parkinson's (which is also a neurological disorder).
Although no two people are exactly alike, there are definite markers that should be easily recognizable in both petit mal and grand mal seizure, or tonic clonic, or whatever the flavor of the week is in terminology.
I find the more distressing part is that people who are not in the community often do not take proper precaution to insure safety, simply because they are not educated.
Then I also find that even within the community there are very many that still haven't a clue. Even just a couple of weeks ago I had asked an epileptic friend about his awareness of ketogenic diets and he had never even heard of it.
So many doctors are so old school that even they are reluctant to brush up on what is happening in the real world. Sadly, if I had been a physician at the time my wife incurred her TBI, the damage would have been significantly reduced. They did not start using the proper ER technique for another 7 years, resulting in a four month coma at that time.
Now it seems the medical field just wants to throw chemicals at it.
I'm sorry for their loss, but articles like this are incredibly frustrating to me. It makes epilepsy sound like a death sentence, as if a person with the condition will inevitably drop dead without warning. Some people die as a result of having an accident during a seizure, but most people with the condition don't just drop dead. Essie222, good for you for not exposing your daughter to this. I was diagnosed when I was nine years old (forty years ago; haven't dropped dead yet), and my mom always treated it in a matter-of-fact way. Unfortunately the actress Hunter Tylo did a public service message - after her son drowned in a swimming pool during a seizure. The actors,athletes and politicians who are open about having the condition don't get the same attention.
My brother, who is 22, has a seizure disorder with frequent grand mal and petit mal episodes. Unfortunately my parents thought they were being good parents by not educating him about the sad facts of his disease. Instead they allowed him to grow up believing he could do anything, be anything, people with out the disease could. And so he chooses not to take his meds, and to eat anything he chooses, he also chooses to drive illegally, which has already resulted in numerous accidents, fortunately no one has been seriously injured, Yet.
Parents need to be realistic about their childrens' health issues, tell them the bad, but stress the good. Don't let them believe life is a bowl of cherries, because it will be a huge slap in the face when they find out it isn't.