Attention to the Today Show, Good Morning America, TMZ and any other uninformed, uneducated, jerk that is reporting about the Travolta family and their child’s death.
Facts about seizures
There are over 38 different types of seizure medications
There are over 40 different types of seizures but here are the top, Primary Generalized Seizures, Absence seizures, Atypical absence seizures, Myoclonic seizures, Atonic seizures, Tonic seizures, Clonic seizures, Tonic-clonic seizures, Partial Seizures, Simple partial seizures, Complex partial seizures, Secondarily generalized seizures
Grand Mal and Petite Mal are not terms used at all anymore
Children who have seizure disorders have behaviors that mimic autistic traits BUT THAT DOESN’T MEAN THEY HAVE AUTISIM
Seizure disorders are difficult to control and even if one medication works, often that will change and the seizures will come back either in another type or more powerful
Parents of children with seizure disorders deal with emotions that can change on a dime. We go from scared, angry, terrified, defeated, exhausted, elated when something works, all the way back to devastated when we can’t find the right answers
Parents of children with seizure disorders realize very quickly that medications can only do so much and the up and down of starts, weans and starts is exhausting
Parents of children with seizure disorders realize very quickly that for as advanced as we are as a nation in the area of medicine, neurology is 90% art and 10% medicine. Today we know very little about the brain and why seizures happen and how to stop it – hence over 38 different medications
Parents of children with seizure disorders buy helmets, padding, different furniture, trained staff or train babysitters in order to guard their child from being hurt BUT ACCIDENTS DO HAPPEN
There is no known cure for epilepsy. But medications can control seizures in most people. These medicines do not actually “fix” the problems that cause seizures. Instead, they work by stopping the seizures from occurring
Larkin has taken: ACTH, Clonazepam, Depakote, Phenobarbital, Sabril, Topamax, Keppra, Klonopin, Zonegran, and now Felbamate. She is on the Ketogenic diet for seizures. She has had a myriad of MRI’s, CT scans, x-ray, and takes more medication than an 80 year old. We have been fighting this battle for 3 years. We are exhausted, fearful, hopeful, caring and deeply in love with and passionate about this little girl. 3 years with many more to come if we are lucky.
Tomorrow when the media begins again picking apart the Travolta family, trying to figure out medications and if or why not their child was on medications, blaming Scientology for whatever they THINK is going on – you all now know the rest of the story. For 16 years they fought and NO ONE knows or understands unless you have stood in our shoes.
The family is grieving the loss of a child. They and their son fought a brave battle for many years. They deserve peace and quiet to grieve.
Have not commented before, am a lurker(met you )at YMCA board meeting last fall.
But having dealt with seizures,
(may the critical people never have to deal with a sick child that doctors do not have the answers for)
I wish these so-called journalists would do their job and inform people the way you just have. If I hear on TV how “heartbroken” the family is one more time I’m going to go postal — of course they’re heartbroken, they just LOST THEIR SON.
Well said Amy!!!!
If only we could run this post on CNN!!!! Thank you for this post…I have been so disquisted by the media.
Amy – Been thinking about Ms. Larkin, you and your fam. You truly should e-mail this post to the newsoutlets. Maybe Dr. Sanjay Gupta, our presumably next Surgeon General, could set things straight. — xxoo Jen in IA
Way to set the record straight!
Well said, Amy! My husband has epilepsy and people are just so uneducated sometimes at what that means. I swear sometimes people look in amazement when they find out, like he shouldn’t be able to function in normal society. He is a medical provider and is “normal”, and has medications to control the seizures. Like you said, there are many kinds of seizures and many way ones can be affected. I watch your blogs regularly and I have to say that you are doing such a fine job, not only with Larkin, but with reaching out to others! God Bless you and all you do.