Purple Day!

Today, March 26th is Purple Day!
What is Purple Day, you ask?
"Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. Last year, people in dozens of countries on all continents including Antarctica participated in Purple Day!"
Check out how Purple Day began here: purpleday.org

We always chuckle when October comes around and it's Breast Cancer Awareness Month - because really, who isn't "aware" of breast cancer? I'm sure the same can be said for most diseases, as well as epilepsy, but I think the "awareness" in Epilepsy Awareness is a little different. It's a silent disorder. Most of you who have met Cameron never saw him have a seizure and would never know he has epilepsy. The hardest part about living with someone who has epilepsy, or having epilepsy yourself is the unknown. Its relatively unpredictable for most people. So, what can you do??? Educate yourself!

So, what is Epilepsy?
Epilepsy is the fourth most common neurological disorder and affects people of all ages
Epilepsy is characterized by unpredictable seizures and can cause other health problems
Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person
The seizures occur because of a sudden surge of electrical activity in the brain. This causes a temporary disturbance in the messaging systems between brain cells. During a seizure the patient's brain becomes "halted" or "mixed up".

Facts about epilepsy:
1. About 326,000 American children under the age of 15 have epilepsy and 200,000 new cases of epilepsy are diagnosed each year. Epilepsy affects people at different ages and in different ways. For some, it will be a temporary problem, easily controlled with medication and outgrown after a few years, but for others, it may be a lifelong challenge affecting many areas of life.

2. Even with today's medication, epilepsy CANNOT always be cured. Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn't work for everyone. AT LEAST 1 million people in the United States have uncontrolled epilepsy. There is still an urgent need for more research, better treatments and a cure. 


3. Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition, or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer's, and traumatic brain injury.

4. What happens in a seizure may look different from one person to another. However, seizures are usually stereotypic, which means the same things or behaviors tend to occur in a person each time they have a seizure. The seizure behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.

If someone is having a seizure:

Loosen clothing around the person's neck.
Do not try to hold the person down or restrain them. This can result in injury.
Do not insert any objects in the person's mouth. This can also cause injury.
Reassure concerned bystanders who may be upset and ask them to give the person room.
Remove sharp objects (glasses, furniture, and other objects) from around the person to prevent injury.
After the seizure, it is helpful to lay the person on their side to maintain an open airway and prevent the person from inhaling any secretions.
After a seizure, the person may be confused and should not be left alone.
In many cases, especially if the person is known to have epilepsy, it is not necessary to call 911.
Call 911 if the seizure lasts longer than 5 minutes, or if another seizure begins soon after the first, or if the person cannot be awakened after the movements have stopped.

Cameron was sick with a fever and vomiting early this week and for the first time in his life, did not have a seizure when he was feeling under the weather! We feared it, because the last time he had a fever we ended up in the ER. What a relief! We're truly thankful for the work and help that the doctors at CHaD have provided us. You can check out how they help kids with epilepsy here: CHaD Kids

Sources:
Medical News Today
Epilepsy.com
Seizure First Aid

A look inside

There is an awful lot that goes on inside the brain of a three year old. There is singing, there is counting and spelling, there is pretending and imagining -- hundreds of thoughts streaming through those little cells all to create the non-stop, constantly-on-the-go, inquisitive preschooler that we see day to day.

Yesterday we got to see inside Cameron's brain, that is, by way of MRI. We arrived at CHaD's Pain Free area at 9:45am for Cam's 10:30am MRI, only to find out that they were running about 45 minutes behind. We got our hungry bellies comfy in the family waiting room and Cam decided it would be fun to take on a 550 piece puzzle, which really meant Mom and Dad do the puzzle while Cam throws the pieces around and loses interest in the first 10 minutes.

Success only long enough to build two houses, which I'd say is a good accomplishment for 40 minutes of puzzle-ing.

So we entered into Pain Free where the resident anesthesiologist checked Cam out - who has a cold, of course. We knew going there that there was a chance they couldn't do the anesthesia because of his cough & cold, but they said there is no way to know until we get there. The resident decided it would be best to have the doctor check him out, so we waited a little longer until Dr. Hillard came in. I was playing on the floor with Cam and Shawn was in the bathroom. He walked in and says "Hey guys! Nice to see you!" I looked up and must have seemed curious about him because he immediately asked if I remembered him...which I didn't. He then reminded me that he was the doctor who monitored Cam during his surgery! I apologized for not remembering him, as it was obviously a crazy day and we met a lot of people, but Dr. Hillard wanted to know how Cameron was doing. I told him that he's only had one seizure since the surgery, but that it was when he had a high fever, so Dr. Morse is confident that it was related to that. Dr. Hillard was thrilled and said that it was so good to hear the surgery may be a success and he felt really proud to be a part of a potentially life-changing event for Cam. Such sweet words to hear. :)

In the moment, it was equally good to hear that he felt Cameron's airways were clear, his lungs sounded good and he felt he was good to go for the MRI. Phew! We really were hoping to avoid driving up another day for it again. Cam is kind of a pro at this point and went right into the room, hopped up on the bed and laid down. He decorated his watermelon-scented mask with dinosaur stickers and fell asleep. A little over an hour later we met him back in Pain Free and shortly after were sent downstairs to see Dr. Bauer.

This is Cameron's right brain:

The area Dr. Bauer is pointing to is the hippocampus - the worm-looking thing. It's defined and formed well, just as it should be. Everything looks and has looked good on the right side of his brain.

This is Cameron's left brain, post-surgery:

Its pretty obvious to see that the whole central section is missing, which is good. Previously that "worm" on the left side was all globular and misshapen, round and unclear - not very worm-like, as it should have been. The main point of this MRI was for Dr. Bauer to be able to make sure he retracted everything he intended to during the surgery, because unlike an orthopaedic surgeon, they don't have clearly defined areas like an arm or a leg that they are working on. After reviewing the MRI he was confident that he had removed everything he wanted to and he was pleased that Cam has nearly been seizure-free since. He mentioned that his scaring, specifically down by his ear where it's still dark and raised, will get better, but it won't disappear. The hypersensitivity that he's having on his scalp should decrease over the next 9 months. All in all, we were happy to hear that we will likely not have to see Dr. Bauer again, barring any unforeseen complications (knock on wood) in the future.

I saw this and felt like today, of all days, it really rang true. So often we'd heard "I don't know how you guys do it." or "This must be so hard." It was, and it still is, but Cameron is such a smart, energetic, enthusiastic, loving and incredible little boy that we know we'll look back on everything he's been through and everything we've gone through and see that it has made us stronger as a family and really shaped the way we deal with struggles and obstacles. Spending time at CHaD puts things into perspective when you see families with children who are dealing with such bigger issues than we have.