Travoltas, Seizures, Scientology and Matt Lauer

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

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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.