30 Days - Living with Epilepsy

30 Days Living with Epilepsy Day 4 {Epilepsy Awareness}

November 9, 2011 by Dana

I’m a lot behind on this blog series. I’ve been extremely busy. All the kids were here over the weekend. I went out of town on Saturday. Sunday I had an unexpected photo shoot opportunity pop up out of no where. Monday I sent my Mom to visit my brother for a week. Today little KK came to visit while her parents’ went to work for a few hours. It has definitely been one thing after another and no time to blog. But I’m going to attempt to jump back in and catch back up to where I should be starting with day 4 of Living With Epilepsy.

What types of seizures do you have?

My girls and I all have the same seizure types and we all have more than one type. The main one we have is Generalized Tonic-Clonic convulsive seizures. We also have Atypical Absence and Absence seizures where we appear to stare off into space an ignore the world but really we are seizing. We have both simple partial, complex partial and myoclonic seizures.

Yes, I know that’s a LOT of seizure types. Sometimes we have them combined, though I don’t think we’ve ever had them all in one day. We may have Absence with a Tonic-Clonic, or Simple Partials with Tonic-Clonic or Complex partials with Absence. Unfortunately with Epilepsy we never know which seizure we’ll get and we always hope for none or at the very least the simpliest and quickest seizure we can have.

To learn more about seizure types visit the Types of Seizures page at Epilepsy.com.

Dana <3

30 Days Living with Epilepsy Day 3 {Epilepsy Awareness}

November 4, 2011 by Dana

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}

November 3, 2011 by Dana

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}

November 3, 2011 by Dana

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}

November 2, 2011 by Dana

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!

Epilepsy Loss {Thankfulness post/Epilepsy Awareness} Day 2

November 2, 2010 by Dana

Today when I got online I found out extremely sad news about a friend of a friend of mine online. For the past week I have been praying for this beautiful family, whose daughter was suffering with constant seizures that the medical team was unable to stop. This poor sweet child went through a horendous ordeal. In the end the gracious Lord decided to take her home to Him. Now this sweet Angel sits beside the Throne of God, while her parents mourn her passing.

I am terribly saddened by this news of this beautiful little girl. My own precious daughters suffer from Epilepsy, a seizure disorder. At 3 and 4 months of age, respectively, I watched them both begin their battle with this disorder. Although I, myself, have it, I never realized the impact or effects of it until they began their own journeys.

My oldest, thankfully, was never too bad with her seizures. They would happen, we would increase her medicine and they would be under control. Thankfully, by the time she was four, her fight with this disorder was pretty much under control without the medication. This does not mean that it’s over for her, only that we can control it unmedicated at this time.

My baby has had the worst time of battling. On the day she turned 4 months old she was placed onto medication, after being subjected to 20 different tests to see why this was happening and to make sure it was not abuse related. Two weeks later her medicine stopped controling the seizures with no warning. Laycie suffered 9 grand mal seizures and multiple petit mal seizures at 4 1/2 months old exactly in a 13 hour period. It was the worst and the scariest day of my life, thus far. The hardest thing I’ve ever had to do is sit back and watch my babies suffer with this disorder, not knowing if it will stop, not knowing if the medicine will work, not knowing if like the beloved angel mentioned above God will call them to Heaven.

Thankfully for us, God has seen fit to allow my daughters to continue upon their journey in life. They have not yet met His purpose or fulfilled his Glory. I am thankful, beyond measure, that He has blessed me with these three beautiful children and that He allows them to live each day. I pray every day that this disorder will end with my daughters, that they will not have to watch their own children suffer through it and know the hardships and fear of watching their children suffer with this, as I have watched them, my mother has watched me, my grandmother watched her and my great-grandmother watched my grandfather. I pray this is the generation that it stops with, but if it doesn’t we will deal with it as it comes. We are blessed that it is not something worse than this that affects our life and we are THANKFUL every day to have another day to love them, to hear their sweet voice and see their beautiful smiles, to fill our hearts with love and joy, just as God intends.

Please keep the family of the sweet girl who passed away this week in your prayers. I weep for her mother and pray she can find Peace and Glory in the knowledge that her sweet daughter is now safe in the arms of our Father, never to have to suffer with this disorder again.