Luv'N Lambert Life

A blog about living with Epilepsy, IBHS, Homeschooling and so much more

Epilepsy Awareness Month

Weak and Loved for Epilepsy Guest Post {Epilepsy Awareness}

by

*This is our most popular post at Luv’N Lambert Life and I’m so very thankful for everyone who has stopped over to visit us, as well as followed to read our story.  We are blessed by each of you.*

Today is the release of my first guest blog post ever! Emily from Weak and Loved asked me to stop by and share our story of our life with Epilepsy for Epilepsy Awareness Month. I’m so excited. I hope you will stop over and check out our post to learn more about us and help spread the word for Epilepsy Awareness Month. You can read the post here on Weak and Loved! 

 ~ Dana
I spread Awareness for Epilepsy for my daughters,
Emmalee and Laycie,
who both began Life with this disorder as infants.

Always praying for a cure!

Epilepsy Truths {Epilepsy Awareness}

by

Every November is Epilepsy Awareness Month and every year I share posts about how Epilepsy affects our lives.  Epilepsy has been a part of my life for as long as I can remember.  I have never experienced a day, a month or a year when it was not a part of my life.

I try to share about Epilepsy in order to help others who suffer from this disorder.  I try to share so that other Mothers know they are not alone on this journey.  I try to share what I know from my own experiences both of living with Epilepsy and raising children with this disorder to help those who need to know that others feel what they have and do daily.

The truth is though that some days, most days, I simply want to forget this disorder exists.  Lately, I find myself not wanting to share, not wanting to provide answers or experiences or thoughts about this disorder.  I just want it to all go away.

I hate HATE seeing my baby girls suffer with Epilepsy.  I hate worrying and waiting to see if their baby brother, my sweet baby boy, will also have this disorder.   I live in fear that I will wake up to find Jackson in the midst of a seizure, as I have his sisters in the past.  I don’t want to even think about Epilpesy’s existence in the hopes that if I don’t think about it, it will all just go away.

I know it won’t just disappear.  I know it will not go away.  But it doesn’t stop me from wishing for that very thing.

I’m a parent to four gorgeous, kind, intelligent children.  None of them deserve to have to live with this disorder.  None of them deserve to know the helplessness living with Epilepsy evokes.  They should be children who don’t have to worry.  They shouldn’t know pain or suffering.  They should be able to live normal, happy lives without sickness and stress.

I often try to find the blessing in living with Epilepsy but I’m not always able to do that.  Some days, I find myself worrying and wishing it away.  Lately, I’m having a lot of those days.  I know God never gives us more than we can handle but I wonder why we do have to handle so much, especially children who are so young.  All I can hope is that there is a purpose and a reason to glorify God in the process.

I am sharing this to show my days aren’t always roses and candy filled when living with this disorder.  I have the up and down Momma days, just like everyone else.  I worry, I fear and I want things to change but they only will when God is ready to make that happen.  Until then all I can do is love the gifts God gave me and help them to live up to his purposes in order to glorify him.

30 Days Living with Epilepsy Day 3 {Epilepsy Awareness}

by

What tests were done to diagnose your Epilepsy?
For myself, I barely remember the tests.  I do recall going traveling 3 hours by car to MUSC in Charleston, SC weekly for several years in my childhood.  I recall having bloodwork done at least once monthly, often more.  I recall having EEG’s done monthly too.  I also recall having x-ray and CT-Scans done to see what my brain was up to.  As a child it was a stressful time and now going through it all with my own girls, I see that it was just as stressful for my mother to go through too.

My oldest daughter’s Epilepsy was diagnosed after two light seizures that she had at 3 months.  She was immediately sent to MUSC in Charleston too and immediately diagnosed with Epilepsy after her doctor reviewed her medical charts and my family history with this disorder.  She was given and EEG which showed a normal working brain, yet we know it wasn’t because she was seizing for no reason.  She was not put through any other tests, except for bloodwork and she was placed on medication for the next four years of life.

My youngest daughter’s Epilepsy was not so easily diagnosed.  She went through every test in the book: an EEG, EKG, MRI, CT-Scan, X-rays in the old fashioned turn of the century wooden torture like device, and blood work only to diagnose her with the very thing I told them in the first place: Familial Epilepsy.  Nowadays she only has to have occasional bloodwork and an EEG here or there. 

As you can tell, tests to diagnose this disorder varies with each case.  Some doctors prefer to be more thorough while others choose not to torture a small child when they pretty much know what is wrong.  Either way it’s important to have a correct diagnoses and to treat each case to prevent seizure that could lead to serious damage for the person going through them. 

– Dana

30 Days Living With Epilepsy Day 2 {Epilepsy Awareness}

by

30 Days of Living with Epilepsy Day 2

How is your Epilepsy medically treated?

For us, Epilepsy is an everyday part of life. I began my seizures at 3 months after a crib accident. My oldest daughter began her seizures at 3 months with no warning what-so-ever. My youngest daughter began her seizures at 4 months also with no warning.

For me, growing up with Epilepsy in the 80’s, medicine and experiements were the only way to deal with medically treating this disorder. I was put on many types of medications as a small child, some still trials and others, like Phenobarbital, well known for treating this disorder.

Thankfully for my daughters, treatment of this disorder has somewhat changed though not much. Medicines have improved and more treatments are available than ever before. In the last 10 years, vast improvements in care have been made and a better understanding of the brain and how it works.

Both my daughters’ Epilepsy has been controlled by medication. My oldest was on medication from 3 months until she was 4 1/2 years. My youngest began medication at 4 months and just began a new one in the last two weeks. She will remain on medication for a while as her seizures show no sign of ending. I’m simply thankful they are controlled at this time and pray they will continue to be controlled for her lifetime.

Everyone’s treatment in this disorder is different. As I mentioned in my last post, there are many different catergories and types of Epilepsy, each requiring a different treatment and each having a different affect on the person who has the disorder. No two disorders are alike and neither are treatments. It’s like rolling die, you never know exactly how it will turn out and all you can do is hope for the best.

– Dana

 You can find the original questions at this blog post!

30 Days Living With Epilepsy Day 1 {Epilepsy Awareness}

by

Welcome to 30 Days of Living with Epilepsy! Please feel free to join in by linking up your blog, posting your response to each question every day and including our blog button in your post, linking back to us! Everyone is invited to join and remember that talking about Epilepsy helps to Spread Awareness! So get out there, talk and share!

– Dana


Day 1 – What is Epilepsy??

Epilepsy, as defined by Webster, states that it is a noun meaning: any of various disorders marked by abnormal electrical discharges in the brain and typically manifested by sudden brief episodes of altered or diminished consciousness, involuntary movements, or convulsions.

The problem with Epilepsy is that it is a vast disorder covering a wide range of little understood actions of the brain. It is often diagnosed through an EEG which provides a chart of various abnormal electrical discharges the brain puts off throughout a set time frame. There is often no explaination as to why these electrical discharges are abnormal nor why the body reacts to them with any of a number of types of seizures.

To learn more about Epilepsy, what it is and how it affects those you love and care about, please visit the Epilepsy Foundation at www.epilepsyfoundation.org.

Stay tuned for more of 30 Days of Living with Epilepsy from Luv’N Lambert Life!

– Dana

Get started here by adding your link! 

30 Days – Living with Epilepsy {Epilepsy Awareness}

by

It’s true – I had hoped to have this big blog series all ready to roll for November 1st but with all of last weekend’s festivities I simply haven’t been able to make that happen.  Life sometimes gets in the way of the simpliest of things.  So I will begin the series today and hopefully at some point I will have a button for it to share with all. (PSST – the button is up below!)

I’m sure at this point you are wondering what I’m talking about.  My plan to spread Awareness for Epilepsy in November is to blog about it.  I plan to write a blog post for every day of the month for the next 30 days, following a list I made last week which I will share with all of you in a few minutes.  Please feel free to jump in and join me.  Talking about our own personal experiences with Epilepsy is the best way to let others know what it’s like.  Why hide in the shadows when we can walk safely into the light and live a somewhat normal life?!

For the entire month of November, I will do my best to answer or direct you to an answer for each of these questions:

30 Days of Living with Epilepsy

1. What is Epilepsy?

2. How is your Epilepsy treated medically?

3. What tests were done to diagnose your Epilepsy?

4. What types of seizures do you have?

5. What are your seizure triggers?

6. What does a seizure look like?

7. What medical interventions and medications have you tried in order to control your Epilepsy?

8. What type of people have Epilepsy?

9. What are your first aid tips for seizures?

10. How do I handle living with my seizures?

11. Why tell others about Epilepsy?

12. How do I tell others I have Epilepsy?

13. How do others around you deal with your Epilepsy?

14. How is your life different because of Epilepsy?

15. How does Epilepsy affect your behavior?

16. How do I cope with Living with Epilepsy?

17. How do I help my child deal with their Epilepsy?

18. How do I stay positive about life with Epilepsy?

19. How do I keep my home safe for life with Epilepsy?

20. How do I discuss my Epilepsy with my medical professional?

21. How does Epilepsy affect my education?

22. How does Epilepsy affect my employment?

23. Does Epilepsy prevent you from doing things you want to do, like driving?

24. Describe your day to day life with Epilepsy.

25. What’s one thing you want other’s to know about Life with Epilepsy?

26. What are your favorite Epilepsy websites?

27. How has Epilepsy treatment changed in your lifetime?

28. How do you advocate for Epilepsy?

29. What has been your worst experience while living with Epilepsy?

30. What changes would you like to see happen in the future in dealing with Epilepsy?

As I previously stated, each of you can feel free to create your own posts on this topic and come back here and share.  I simply ask that you credit Luv’N Lambert Life for the original idea.  Link to us using the 30 Days of Living with Epilepsy button below. Feel free to write from the perspective of being a parent, child or a person with Epilepsy, even a sister or brother with this disorder, however this it affects your life!  The important thing is that the more we talk, the more we share, the more people come to understand how this disorder works and affects us all!

So get out there and SHARE!  Spread the word for Epilepsy Awareness!!!  I look forward to reading everyone of your posts.

– Dana

Please link up to this blog using the linky link below and don’t forget to include our button in your post!


Get started here by adding your link!