The Real Superheroes

“Epilepsy, also called seizure disorder, is a diverse group of neurological disorders of varying types and severities which are characterized by recurrent seizures. When a person has had two or more seizures which have not been provoked by specific events such as trauma, infection, fever or chemical change, they are considered to have epilepsy. An estimated 65 million people worldwide currently live with epilepsy. One in 26 Americans will develop epilepsy in their lifetime.” CURE (Citizens United for Research in Epilepsy)

3.4 million Americans suffer from epilepsy and one happens to be my cousin, Sydney Dozier, but he hasn’t let his diagnosis stop him from living. Recently, his mother, Demita Dozier, started sharing their story on Facebook. She told me it has taken her 14 years to share their story and I believe . . . I know now is the perfect time. She has given me permission to share her posts which are posted below.

You never know what life will bring and you never know how strong you are until there’s no alternative. My cousin, Demita Dozier, is one of the strongest people I know. She is truly an inspiration. I hope you’ll take time to read her story.

To learn more about epilepsy or to make a donation, please visit the Epilepsy Foundation Texas website.

***

I’m going to end this month with some what I’m thankful for and true facts about Sidney and Epilepsy.
Day 1 I’m thankful for this journey. It’s not one I would have picked for my child nor myself but it’s definitely made me a more compassionate and stronger person.
Sidney’s first seizure occurred September 2003. He was only four years old. We were at a close friend/sister friend’s house and the boys were sitting on the floor eating. Sidney has always been an ‘entertainer’. So the first thing I said was Sidney stop playing and eat. She says I don’t think he’s playing. Immediately I thought he was choking (I thank WM for the awesome training we got in those early years) and was about to start CPR. BUt I couldn’t open his mouth and he wasn’t gasping for air. Until that day, I had never witnessed a seizure and knew nothing about Epilepsy. I PANICKED. There’s no worse feeling to feel hopeless seeing your child helpless and there’s nothing you can do. What seems like a lifetime was a few short minutes.
After two days in the hospital, numerous tests and no known epilepsy in either family, we were released with the assurance ‘many people have one seizure in their lifetime and never have another one’… that wasn’t to be our life story💜💜

#novemberisepilepsyawarenessmonth
#ourjourneyourlife
#idothisforsidney

Day 2
Sidney’s first seizure type was tonic clonics (most people know as grand mals). It wasn’t but a few short weeks before he starting having atonic (drop seizures). He would be running (or standing) and drop straight to the ground. Those early days we thought he tripped or was a little bit clumsy. A neighbor, who happens to be a nurse, was the first to recognize it as a seizure. On the way to the hospital, sidney was holding a Superman action figure. I heard the sound (generally before he has a TC) and Superman flew up to the front seat. Sidneys first Myoclonic seizure (Seizures with rapid, brief contractions of muscles.) At the hospital, for ten days this time, with all the seizure types presenting themselves, he was “diagnosed “ with Doose Syndrome or LGS (Lennox Gastraut Syndrome). If the latter, I was told to enjoy my child now. He would get progressively worse until he would no longer be functioning. I thank God, this wasn’t to be our life story either….

Today I’m thankful for Natalee Cone Morin. All I had to do was call from the hospital and she was googling (not sure what it was called back then), researching, printing, emailing, you name it. It was her mission to find us all the information/help I needed.
💜💜💜

#novemberisepilepsyawarenessmonth
#idothisforsidney
#ourjourneyourlife
#sorrynotsorryforthelongposts

Day 3
It was actually an attendee that looked at his EEG and blurted out it looks like Doose Syndrome.

Myoclonic-Astatic Epilepsy (MAE), or Doose Syndrome, is an epilepsy syndrome of early childhood that is often resistant to medication. For this reason, it can be difficult to treat. MAE is an idiopathic generalized epilepsy, meaning that there is no known cause for the seizures (idiopathic) and the seizures originate from all over the brain (generalized) as opposed to coming from one focal area. Onset of MAE occurs commonly in the first five yeas of life, with the mean age being three. Statistics show that it usually affects children who have previously developed normally, and boys are twice as likely as girls to develop MAE. In some cases, other family members (immediate or extended) may also have seizures. It’s named after a German doctor, Herman Doose.

Although Doose is no cake walk, LGS was by far more devastating. I remember our doctor looking at me and saying. As bad as his EEG is and as much medicine as he is on it’s a wonder he’s still able to function. Yep that’s right before he told me to spend as much time as I can with him. I fell apart….

Today I am thankful for my parents, my brother and my grandmother.
My mother was there when the doctor delivered that awful news. I remember hysterically crying (y’all know the ugly cry). My mom said get it out and tomorrow do what you need to do. In other words,
Have your moment of weakness but be ready to fight for your child’s life afterwards. Years later she told me she wanted to cry too, but she had to be strong so I wouldn’t give up. Although my father was already deceased, he would have said the same. They taught us to fight hard without giving up. If you knew me as a child, you knew my brother did all the fighting for me. I hadn’t learned my strength YET. If you met me in college, you knew I relied on my friends for my strength. But if you met me afterwards as an adult, you’ve only seen that strength. If you met me after I became a mom, you know what a mama bear I am.

💜💜💜

Day 4
As previously stated, Doose Syndrome is rare. How rare you ask? In 2003, we were told there were only 1300 diagnosed cases in the WORLD (not US). As the world got smaller (ie internet), it became obvious that there maybe more than 1300 but definitely pretty rare.
Today I’m thankful for my Doose Support Group. In 2003 (thanks to Natalee), I joined this group. A group that started with maybe 20 parents (give or take) from all over the world that started a yahoo chat to discuss treatments, behaviors, seizures and downright therapy for the parents. These parents not only researched and fought for their children (yes coming soon. We sometimes have to fight doctors for our children), but all of ours. When they learned something they shared. We celebrated every victory over Doose as if it was our own child. I don’t know how large our group got but we always maintained the same GOALS. Many of those parents moved on. Some after their child became seizure free and life returned to normal. Some because the constant reminder of seizures was too much to handle. But the majority of those parents are still around. Still fighting. Still giving advice. Still offering a shoulder to cry on. I’ve only met a few of these people in real life, but I consider all of them my friends. We often joke we’re going to win the lottery and have a Doose get together. I have my fingers crossed. Again I say thanks. Sidney and I would have fared far worse without ALL OF YOU.

💜💜💜💜

#novemberisepilepsyawarenessmonth
#idothisforsidney
#ourjourneyourlife
#sorrynotsorryforthelongposts

Day 5

Getting adjusted to our new life was no easy task. I refused to accept that Sidney (we) would/could not beat Epilepsy. I pushed him to keep doing the things he could do as I tried to teach him new things. (We were in the hospital with flash cards and school supplies 😳😥). Many days we were stuck in the house. I turned down all offers for fear of the “what if”. He would have hundreds of seizures a day (I’m only counting the ones I saw. EEG showed he had more seizures that I didn’t see (subclinical) ). He would be like this for 3-4 days. These days we laid on the couch and watched tv (Disney Movies, Dora, endless mindless cartoons to be exact 🙃) to keep him from getting hurt. Those days were followed by a few days of what I called fog. He clearly wasn’t himself, but didn’t require constant supervision. And then I would have my son back for a few days before the cycle would repeat itself. Some weeks the good days outnumbered the bad. Most weeks that wasn’t the case.

Statistics are 65 million people around the world have epilepsy. About ONE THIRD of those people have uncontrolled seizures because existing treatments do not work(Epilepsy Foundation website)
Sidney falls in that 1/3 group. Look at the numbers. That tells me we need more research, more treatment options.

Today I’m thankful for those who kept Sidney when I had to go to work. When he was having too many seizures for school.
Velma Gale Pipkins, Christy Brannock-Beyer and Linda Degelman. It is said it takes a village to raise a child. I’m thankful this single mom with no local family had a STRONG village.

💜💜💜

Day 6

Happy Thanksgiving. I’m Thankful for all of my Family and Friends. I’m Thankful for this Day. For the good food I’m going to have with great company. 🤣
And a Special Thanks to R Green Peoples. There are not enough words or thank yous for this lady and her husband. Sidney started Happy Days learning center at 17 months. After the first week, the owner tells me Sidney has a second mom here. Mrs Ruth had fallen in love with him. They have been partners ever since. She was his mom when I wasn’t there. She loved and she disciplined him. I told y’all our village was strong. She kept him when I had to go out of town for work. She took him home with her when his seizures were bad, when his behavior was bad and when he just needed his Mrs Ruth and Mr Oliver time. We haven’t seen her in a while and miss her tremendously but we still talk about her often. Remembering all of the good times.

💜💜💜

Day 7

Everyone is most familiar with Tonic clonic seizures but let’s talk about the other seizures. Sidney’s drop seizures were so strong, we thought he would have permanent bald spots on the back of his head from hitting the ground so much. His forehead always had a goose egg from falling forward. One Target shopping trip, Sidney had a myoclonic (jerk) so powerful the entire buggy flipped over and dumped him out. You can imagine every shopper was looking at me as if I was a bad mom not watching her child. The picture of the pot below is one sidney cracked in two with his head from a drop seizure. In grade school, Sidney knocked his two front and side teeth up all the way into his gums. Orthodontist had to put braces on to bring them back done properly. I think you can understand why we stayed home unless we absolutely had to go out.
Today I’m thankful for all of Sidney’s teachers and one special elementary school nurse. Some were strict, some spoiled him a little too much but they all had the same goal I had. Let’s make sidney the best sidney he can be. If I’ve missed anyone feel free to tag them.

Day 8

Drug-resistant epilepsy (DRE), also known as refractory epilepsy or pharmacoresistant epilepsy, is defined as failure of adequate trials of two tolerated and appropriately chosen and used antiepileptic drugs (AED schedules) (whether as monotherapies or in combination) to achieve sustained seizure freedom.

Sidney has tried nine different medicines (AEDs Anti Epileptic Drugs)and a diet. None have totally controlled his seizures. Some had side effects worse than the seizures themselves. Two of them would require high dosages of Vitamin B to help with bad behavior. I no longer judge when I go into stores and see little ones having temper tantrums. Immediately what comes to mind are the days I tried everything to get Sidney to behave, but he just couldn’t. Now let me tell you, I never gave up trying though and we did leave (no matter where we were) when he couldn’t get it together (birthday parties included).
He’s battle insomnia, no appetite, being too tired. Additionally, the withdrawals when changing/stopping these AED’s makes you question every decision you make.

Im thankful that no matter how bad it’s been, Sidney is a happy, kind and loving young adult. When Sidney was maybe 9 or 10 years old, Laura Warde-Canahuati said, ‘Sidney is fine. He thinks something is wrong with everyone else because nothing is wrong with him’. We laughed. But it’s so true. It’s gotten me through some tough times. Knowing Sidney isn’t suffering. He’s not fretting over the what if’s. What he could have been or should be doing. Yes. I’m thankful for Sidney.
💜💜💜

Day 9
Remember I said early on sometimes you have to fight for your child. It’s true. I have the highest respect for trained professionals. I totally respect the time and education it took to get there. But you can not possibly know my child better than me.
Sidney’s first doctor was “just” a neurologist. He was the best and I wished we could have stayed with him longer. Dr Ian Butler was the neurologist Sidney’s pediatrician recommended. He had no idea how to treat Sidney. Admitting his specialty was more autism and not epilepsy. He said upfront, he’s not textbook. I’m more than happy to try this with you. You’re his mother you will be just as big a decision maker in this as I am. I would read everything on my Doose support group and take it back to him. He was open to any and everything. But Sidney’s seizures were getting worse so he suggested we change to an Epileptologist (only the severe cases of epilepsy see neurologists that specializes in epilepsy 😳😥). So we started with Dr Dave Clarke and Dr James Wheeler. Again, blessed with doctors who listened to me and we worked together. When I said I wanted to try the diet they encouraged it. But back then, there were waiting lists to start the ketogenic diet. So I applied fo a Epilepsy trial for the Modified Atkins Diet for seizures. Sidney was accepted but that meant traveling to John Hopkins in Baltimore Maryland at our expense. How many of you know I didn’t care. So we travelled to see Dr. Eric Kossoff for almost two years (every three months). Sidney was five years old when he started the diet. I used to have to order his food from the internet. This was before all of these low carb foods were the rave lol. He was restricted to 10 carbs per day (not per meal). The diet helped us get to where we are today. He never gained seizure freedom, but it was our first glance and seeing days then weeks without seizures. Sidney stayed on the diet until he was 10 years old.
I’m thankful for the doctors that listen to their patients. The ones that include them in the process. You shouldn’t have to fight for your child. When Dr Kossoff told us we needed to have a local doctor that He wouldn’t be able to treat sidney if he was hospitalized in Houston. Our former doctors had left Houston (pediatric epileptologist are very few. They are in high demand. They move frequently). He recommended a doctor that we never got use to but he was the only one In Houston at the time. He demanded we only see him. So we gave up John’s Hopkins. After I told him my concerns and plans. How We had previously partnered with our doctors That doctor never saw us again, we’ve only been seen by his nurse practitioner. Sidney was eight. Ten years and he’s never bothered to even say hi. But you know what? It’s been a blessing.

💜💜💜

Day 10

When your child has any chronic illness, you miss ALOT of work. Your vacation days become sick days. There were many days Sidney and I were ready to walk out the door when the seizures started. Some days I barely made it to work when I would get the call. My cell phone remained on top of my desk (way before it became customary) so anyone could hear it, if I stepped away.

I thank my employers and coworkers for being part of the team. A big part of the village. It’s not easy having to pick up someone else’s load when yours is already full but they did it. Understanding, the call to come get Sidney could come at any time. I’m also thankful that due to Affordable Care Act (aka ACA or Obama Care), I’m no longer bound to a job due to Sidney’s illness. Not talking politics, but to not be able to have insurance due to a pre existing condition hurts all of us. I’m thankful that my employer now hired me knowing it could be a rough ride.

💜💜💜

Day 12

At four years old, socially, Sidney was your typical little boy. He had friends. Lots of friends. Everyone was his friend. He loved everyone. And actually this hasn’t changed much except as his friends matured Sidney didn’t. His friendship circle became smaller and smaller. I tried to keep him in different activities. Again, he was just too immature to keep up with his peers.

There was one organization where both the boys and their parents embraced Sidney. The Boy Scouts became our lifeline for socialization. I remember when he was going from a Cub Scout, where parents are heavily involved, to Boy Scouts, the scout master telling me eventually you won’t be going on these camp outs. The older scouts will take care of him. I’m thinking yeah okay. But it did happen. Let me be clear, I have gone on my fair share of campouts, including a couple of week long WINTER camps. So this girly girl was ecstatic when campouts were no longer on her agenda 🤣

Today I’m Thankful for the Boyscouts. But most importantly pack 1188 and Troop 3. Especially the parents. People your kids are a representation of you. If you are kind and accepting, most likely your child will be too. It’s just that simple.

💜💜💜

Day 13
Final day of November. Though Epilepsy Awareness Month officially ends today, doesn’t mean we get to “shelve” it until next year. For many, epilepsy is a reality EVERYDAY (seizures, medicines, diets, delays, therapies).

For me, besides my support groups, the one thing that kept me sane through those hard years was CRAFTING. I first started with making scrapbooks of Sidney. It was my true happy place. From there I began making Christmas cards (and every other holiday) and on to treat boxes for Sidney’s teachers and my coworkers. Again, I thank them for humoring me all of those years. Every holiday, every occasion ( oh someone’s getting married, having a baby. I’ll do the decorations. Lol), I volunteered (more like showed up with) diaper cakes, treat boxes, favor bags, decorations 😜.

It may sound crazy, but I’ve made some lifelong really good friends through my craft groups. Some of these women, I’ve never met in person. So now you know why I have so many friends on Facebook 😍😘

Either all of that therapy really helped or I’m just in a happier place in my life. I seldom craft now. I’ll make shirts here and there. Nothing like before. But from time to time, I have to go make something just to get ME back.

Sidney and I have been Blessed by so many people during this journey. There’s not enough words to express our heartfelt thanks. Those of you who have been there from the beginning, those who came along the way and those just finding out about our journey THANK YOU 😘😘

I want to thank two people that I just picked up the phone and said I need you. They dropped everything and came. My sister/Friend Wendy Campbell Robinson took a train, left her husband and two small girls to come stay at the hospital with us. My cousin Kay who caught a flight to Houston only to almost take her first ambulance ride to the hospital (no matter how much we begged, they wouldn’t let her ride with us). My wonderful neighbors had to bring her to the hospital). Those early days were full of LONG hospital stays.
I want to thank my family. I could not have done it without them. Trips to Maryland four times a year, specialty food, medicine, therapy, doctor and hospital bills are not cheap. Uncle George (no one else is on Facebook). Thanks
Thank You John O LaVergne Jr. for realizing I was a package deal, Accepting the challenge, stepping up and being the MAN we needed. We Love You 😘
Last, I want to thank God Without my faith, Sidney and I would never have made it this far.

This is our Life Story. Our Journey.

💜💜💜

2 thoughts on “The Real Superheroes

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