Greg Grunberg is a Hero for Epilepsy

WOW! Great news like this, is like an angel earning wings. Especially when an Activist puts into perspective divine support for not only his son, but to the millions wtih epilepsy. I, too, had epilepsy for 37 years. Begun at 3-months. Wasn't fortunate for my parents/family/friends having resources about this condition. So the so-called "starring spells" or "fits" taking it's course as a toddler to teen, never was diagnosed. They (seizures) just happened like once, twice, three times year, 'til I hit 15. Then I had my first grand mal seizures, and medical treatments begun it's course. The meds weren't being successful for the remainder of my life, cause the seizures grew frequently. Until I reached 37, was I ever impressed with an article read on research titled Surgery for Patients with Epilepsy. In 1996, met all the pre-surgical testings and an entire new life, begun October 1st, 1996. NO MORE SEIZURES. The lobectomy was the gift! Hats off to all those fabulous medical teams...with many of them ready to help YOU with seizures, your families, your loved ones like this wonderful DAD is doing right now as an ACTIVIST. Blessings to him and his son and family and the millions with Epilepsy today. ;-)

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Here is my story about having Epilepsy. When I was 6 month old I was diagnosed with Epilepsy and fought the seizures for 44 years with various medicines. I finally checked into KU Medical Center 11 years ago and went through there test and had corrective surgery 11 years ago and have been seizure free ever since. The surgery that I had in case anyone is interested into checking it out was called a TEMPORAL LOBECTOMY. I hope that your son’s surgery was as successful as mine was.


Take Care,


Neal Brandt

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My daughter has been fighting the numerous effects of a brain tumor since the age of three. She is now 29. Forty two surgeries and countless hospitalizations and procedures, later... one of the effects is a seizure disorder of which there is a very long history. A few key points though:

For three years she was a walking time bomb. Every day, usually twice a day (often not long after receiving medications) she had seizures. After a while I noticed on the days she had a beverage with food dye in it, she would have twice the episodes of seizures. Yellow food dye and red #40 both caused problems. Other food additives were also suspected.

Various doctors had different opinions on whether Dilantin and it's generic were equally effective. For her, they were not because there is red dye #40 in the generic version.

I ended up having to give her generic Benadryl twice a day with her meds (even though it also has red dye in it).

I was told ANYTHING that causes stress can trigger seizures. For her, one of those things is not getting enough fluid daily (a challenge due to a condition secondary to the brain tumor) (Note, it is also possible to drink too many fluids in a day; follow your doctor's advice).

When we moved several hundred miles south and not long after starting the anti-histamine treatment, she nearly completely stopped having the more debilitating seizures. I'm not sure if it was due to an inside or outside environmental issue or what; but I thank God, she has nearly stopped and/or changed to a milder seizure. BTW, I thank God, my daughter is still alive! If you do not have a personal relationship with Christ, I HIGHLY suggest you develop one.

During the three years she was a walking time bomb, one of our dogs woke the family up by barking during the middle of the night when my daughter was having a bad seizure. After barking again during another seizure, I realized that I could take advantage of that God send. I successfully trained the dog that originally barked and two of our other dogs to consistently bark to let me know when my daughter was about to have a seizure so I could make sure she either sat down or stayed seated during a seizure. The training was life-saving repeatedly; but especially twice when the seizures happened during episodes of vomiting while my daughter was lying on her back.

Usually just prior to her seizures, my daughter would change her rate of breathing and her breathing would become more audible. It was during those changes I was able to condition the dogs to speak and warn me of the impending seizure. Even though I tried to keep my daughter within arm's reach 24/7 for three years, (including sleeping with her) sometimes the seizures would come on with little warning, quickly, and quietly, I still had to try to do daily chores, etc. The dogs, were extremely helpful in helping me have a greater time buffer to stop what I was doing and go into safety mode.

And... I know it sounds crazy trying to give rescue breathing to someone who is actively having seizures; however, at least three times the seizure effects made it obvious that rescue breathing was needed. After a couple of rescue breaths were given, the seizures usually stopped. This is something that was done from instinct; not from what a doctor advised. Again always check with your doctor for any type of help that might not have been mentioned by the physician before doing something on your own.

Years ago, one of my daughter's seizures was a result of a bilateral subdural hematoma and a blood count of 3.8 (of which took 13 attempts to get an IV placed for emergency blood transfusion. After working in the same hospital, years later, I found out that the late night resident, could have called in an attending to surgically put in a line to start the blood transfusion much sooner. With a blood count of 3.8, my daughter could have spontaneously died).

Which leads me to another tip. ALWAYS, ALWAYS, ALWAYS stay with a hospitalized child; and preferably an adult if seriously ill. If you have to leave for a break or other obligations, make sure someone somewhat knowledgeable of the symptoms, etc, stays with your loved one.

As for our seizure dogs, unfortunately, two of the dogs passed away from old age. I am currently training another dog to repeat the behavior of the others. Training is a bit harder now because the breathing changes don't usually occur prior to a seizure; but I am not complaining. There is at least one organization that provides seizure service dogs even though some people say it is not possible to train a dog to be a seizure service animal. I personally know they can be trained. Dogs who are sensitive to lighting usually make for a better candidate.

Two other tips, always make sure you find doctors who will actually LISTEN to what you have to say and who will work WITH you. If you are not happy with a doctor, and if you are able to, find a better doctor. And when possible, always see the same doctor in a group so that one doctor can pick up on changes of behavior, condition, etc. faster. Also, when seeing a doctor unfamiliar with the patient, make sure he/she knows if the current displayed symptoms/conditions are normal. Once diagnosed with certain conditions that resulted in hospitalization, staff would sometimes assume that my daughter's symptoms at the time were her normal, daily status. I would have to TELL them, that she was not acting like 'her normal self'.

My heart goes out to those who have lost loved ones to seizures and to those who feel they are living with a walking time bomb; or are themselves living life with seizures. I pray God protects us and blesses all of us.

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There is a forum at Talk About It.
talkaboutitorg.ning.com/forum

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