Epilepsy Awareness Day, March 26th!

It’s Almost Time!!!
Epilepsy Awareness Day is March 26th!!

What will YOU do to raise awareness?

  We went to our Children’s Appointment to meet with the Neurosurgeon who will do Brett’s VNS implant surgery this week. We brought Purple Bags with Purple Goodies (Lavender Awareness Ribbon Butter-mints, Wings of Hope Purple Ribbon Pens, White Purple Ribbon Grip Pens, Wings of Hope Purple Ribbon Calendar Cards)  to the Office Staff, our Neuro, the first Neuro Brett saw there, the Epileptologist who does the Video EEG testing and our most favorite Nurse ever who is so great and works hard for Brynn and Brett. I had a really cute Dr. and Nurse character made for our Neuro & Epilepsy Nurse. They are wonderful and are always there for us, always respond when we are in crisis, have a question or a need. They both go above and beyond what we could ever have imagined in care for our Epilepsy Warrior Boys, Brynn and Brett. The boys signed them and I wrote a card of thanks. We will be going out asking businesses to let us put up Brynn and Brett’s photos and giving out pens next week. I thought I would write about Epilepsy, as if I do not write enough about it!

Did you know that 1 in 26 people will develop Epilepsy in their lifetime?
Did you know that there are many different types of seizures. Symptoms can vary from disruption of the senses lasting seconds, to short periods of unconsciousness to the full convulsions most people associate with Epilepsy.

Did you know that Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined? Historically, epilepsy research has been under-funded.  Each year NIH spends $30 billion of medical research, but only ½ of  1% is spent on epilepsy.

Did you know Sudden Unexpected Death in Epilepsy (SUDEP) accounts for 34% of all sudden deaths in children?

Did you know Only in about 30% of cases is the cause of epilepsy determined. The other 70% remain unanswered, in what is referred to as idiopathic epilepsy?
Did you know about 150,000 new cases of epilepsy will be diagnosed in the United States each year?Did you know early in the 19th century, people with severe epilepsy were cared for in asylums?

Did you know estimates are that up to 50,000 deaths occur annually in the U.S. from status epilepticus, Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes?

Did you know an estimated 3 million Americans and 65 million people worldwide currently live with epilepsy?Did you know the Greek philosopher Hippocrates was the first person to think that epilepsy starts in the brain (460-377 BC)?Did you know With the right AEDs, up to 70% of people with epilepsy could have their seizures controlled, leaving 30% uncontrollable/medically refractory?

Did you know in America, Epilepsy is as common as Breast Cancer, and takes as many lives?Did you know Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors?

Did you know the mortality rate among people with Epilepsy is two to three times higher than the general population?
Risk of sudden death among those with Epilepsy is twenty-four times greater.


Did you know about 30% of those diagnosed with Epilepsy are children?

Now that you know… We hope you will wear Purple or Lavender this March 26th and tell people about Epilepsy. Not just for Brynn and Brett, but for the 65 million people worldwide living with Epilepsy.
(((((hugs))))
~Denise, Brynn and Brett






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Okay, I put this off long enough….  Went back to Children’s for our June appointment. Brynn is currently stable at an average of 4 Complex Partials and 1 or 2 tonics a week. Just ONE Tonic Clonic in the whole month of June and one so far in July. May be the best we will get… Could get better…. could get much worse and fast. Wouldn’t it be nice to know…


 Cognitive functioning has slowed again, and we have weaned Zonegran.   Keeping Klonopin, Depakene and Vimpat for now. We went for a Video EEG on Thursday and Friday last week. He had a good night, so I am unsure if they caught any seizures. Talked to the Eleptologist about Brynn also. She said that he has Congenital Intractable Multifocal Epilepsy.
I asked if it caused his Cognitive Disorder and MR,
she said no… He was born that way. She also told me that with his left Occipital Lobe, Frontal Lobe and Right Centrotemporal .     He actually could be blind, could have not talked or walked. She said he does very well in spite of what is going on in his brain and that Children’s brains are amazing that they can go around these issues and one area takes over the others lack. She told Brynn he was brave and she was proud of him for doing so good through the testing… and she told him he is AMAZING! We talked a little about Genetic testing, said I will have to ask his Neuro about that. I mentioned Fragile X, she said most Fragile X  children are moderate/severe MR, he is mild MR with Cognitive Disorder, could be Fragile X but could be Prader Willi or others too…

Hmmm, Prader Willi… that syndrome that I was laughed at for suggesting to that Neuro before his second known Tonic Clonic? Yeah, oddly enough I haven’t even thought about that syndrome in the two years since Brynn’s Epilepsy got out of control. Looking back on the conversation I should have asked tons of questions… but I froze mentally after she said he could be blind… could have never learned to talk and walk… I was so taken back by the miracle of it all. He can ride a bike, a four wheeler… He may only read on a 1st Grade entry level, but you should see him change a tire and work on a bike…. You should see him play on his iPad… You should see him laugh and play… 

          
Of course now I think what if it moves, starts somewhere else? What then? No negativity Denise, you didn’t come this far to become a faithless fearer of the future! No, take it all one day at a time and be ever so grateful that my precious Brynn can indeed walk, talk and see. Appreciate everything he can do and make the best out of what he has, whew. So… onward we will go. Going to ask again for genetic testing. I went back over his previous Video EEG report and I understand it better now after talking to her. I understand th faulty wiring comments better and I actually comprehend what dysfunction in the brain means. I still have a lot to learn about this Epilepsy monster, but I have come full circle to reality…
The reality is that he was just born this way. Our Abba Father makes no mistakes. He is a beautiful miracle, as all children are. He just sparkles differently and his light just so happens to flicker too much at times. What an amazing boy he is indeed! Hard to believe in just a few months he will be a… TEENAGER!
 Brynn
is so excited to go to Med Camp on the 15th for a whole week!! I am excited for him to have such a wonderful opportunity to have a fun filled week in a medically supervised environment to ride horses, canoe, swim, hike, archery and most importantly meet other children like him! 🙂 

 
 

Lots of beautiful sparkly children will be there… just like him!      🙂