Monday, November 11, 2013

Epilepsy Awareness Story: My Son Is Epileptic

    If you are a regular reader you will notice that I changed the template of the blog just for November for Epilepsy Awareness Month. Check out the Epilepsy Awareness Tab to read all posts that have been posted about epilepsy, my story and others' stories, etc. If you or someone you love have epilepsy please email me your story at stories can be anonymous and do not worry if you are not a writer I do not mind editing.
       Please remember to read and share these stories with your friends and family to make them more aware of epilepsy. Coming from someone with epilepsy it means a lot! Also, please donate to the Epilepsy Awareness Foundation by clicking here for the blog donation page. We are trying to raise $1000 dollars for our goal for the month. Remember you can donate to the Epilepsy Awareness Foundation all year round and many places of work will contribute to your favorite charity. Please help us find more information and a cure for this condition.
     Today's story comes from Pamela who live in North Carolina and deals with her son, Dillon having epilepsy and has had it for some time. Please read her story and do what you can to spread epilepsy awareness.

Epilepsy Awareness Story: My Son Is Epileptic
"Hi my name is Pamela. We live in beautiful Weaverville, NC. I am married and we have a handsome, fun loving, happy little 8 year old son, named Dillon. He's our world!
   Just shortly after Dillon's 3rd birthday his whole world and ours changed. Dillon was born January 9, 2005. He was born 10 weeks early at 30 weeks gestation, only weighing 2lbs, 12oz. After 7 long weeks in NICU, Dillon was discharged and we brought our beautiful boy home. Our NICU experience was wonderful! Dillon had no complications, no health problems. He was a healthy baby boy! Thank God!
Dillon continued to grow and meet milestones on time.
On February 29, 2008, Dillon had his first seizure, and the journey began. The week prior to February 29, Dillon was sick with a "virus", he had a very high fever and a horribly bad sore throat. Our full of life lillte boy was so sick that he literally slept a week away. After 2 trips to the pediatrician that week, it was said it was just "viral" and to treat the fever. They had tested him for mono and strep and both were negative. By the end of that week the fever had broke and he was feeling better but still staying so tired.
     After having the first seizure on February 29, we were rushed to the ER at our local hospital. Upon arriving Dillon went into another grand mal seizure. They rushed him away from us and hours later were finally able to see him.  He had quit breathing during the seizure and they had incubate him. He was in PICU for a few hours and then released to a regular room.
        The next morning we were discharged and told "seizures happen and sometimes there's no explanation". We went home and made it over night. The next morning we were rushed to the hospital again. Dillon was having another grand mal seizure. We were then admitted to hospital and tests began. CT scans, MRI of the brain, spinal taps, blood work after blood work, and EEG's. There were no signs of anything being wrong. The EEG was picking up the seizures but His brain was "unremarkable"! He continued to have seizure after seizure (all of them being grand mals) he was loosing his base line and starting to regress. We begged them to find out what was wrong and if they couldn't fix him to send us somewhere where they would. By this point they were speculating that he had encephalitis (swelling of the brain) but why?
After a week at the local hospital we were sent to Winston-Salem and were admitted to Brenner children's hospital. (My opinion, best hospital in the world!) upon arriving there, we were told Dillon was in status and the only way to save or help him was to put him into medically induced coma. Our hearts were broken! What happened?!?! We were loosing our boy.
      Dillon was in the coma for 10 days to suppress the brain activity. So many things happened and went wrong. At that point all we could do was pray that God healed our child! They did tell us Dillon had encephalitis and it was a direct result from the virus he had the week earlier. The virus was identified thru their spinal tap and identified as entro virus ( that's a whole category of virus' from common colds to anything upper respiratory)
       Dillon was brought out of the coma after 10 days and the seizures still happened but not near as bad or as often!! At that point he had to relearn everything. It was like he was born again that day. We were told that Dillon suffered brain damage from the seizures and the fact he was in status. He had to have a g-tube placed, had to learn to walk again, talk again, everything. We were then sent to Charlotte to Levines children hospital for an intense 2 week rehab. And finally on May 1st we came home! With our son!!!
        It was a journey I wouldn't wish on anyone!! Dillon is now 8 and our journey still continues. On average he still has 1-2 grand mal seizures a week. He is experiencing more absence seizures lately. I think he's had about every seizure type that is out there. They are ALL horrible to see but am so thankful he's no longer having the drop seizures!! They are controlled with Banzel. He takes other seizure meds as well, and it's hard to tell what's a side effect and what his "normal" really is. With a lot of therapy Dillon can now walk and run (something he loves to do!) His gross motors skills are excellent! The biggest delay we see now is his speech, and attention to everyday tasks.
            Please help us in supporting epilepsy awareness month!! This same thing could happen to anyone just as it did us. So much research is needed! We are in the year of 2013 and we're not even close to a cure. The AED's are sometimes so bad with side effects that people would rather do without and have seizures to not deal with side effects.
 If you can't donate to the epilepsy foundation or to your local chapter, PLEASE help in other ways! Wear purple all month long, educate yourself on seizures, and know what to do and not what to do if you or someone you know has seizures.
One of the biggest myths to epilepsy is putting something in someone's mouth to prevent them from swallowing their tongue. PLEASE PLEASE NEVER do that! It is impossible for someone to swallow their tongue!! "

Thank you so much Pamela for telling us your story. We wish you years and years of seizure free good health. Thank you for spreading Epilepsy Awareness!

If you have noticed a change in my normal format for my blog it is for Epilepsy Awareness Month. Please check out epilepsy facts and stories on my Epilepsy Awareness Tab. Also, I am collecting donations this month. Your donation goes directly to the Epilepsy Awareness Foundation. DONATE HERE! Also, if you or someone you love suffers from Epilepsy please email me at your story to put in a blog post they can be anonymous. (no worries if you are not a writer I can edit it for you!). Thanks for all the love and support!

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