Luv'N Lambert Life

Mental Health, Homeschooling, Epilepsy and More

Epilepsy

30 Days Living With Epilepsy Day 2 {Epilepsy Awareness}

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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}

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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! 

November = Epilepsy Awareness {Epilepsy Awareness}

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Soo, Dear Friends, I don’t know if you noticed but both blogs (yes, I now have two) have been turned PURPLE.  Why you ask?  The answer is SIMPLE.  November is Epilepsy Awareness Month and Epilepsy is a HUGE HUGE part of Luv’N Lambert Life. 

Most of you know that both of my daughters and I suffer from this wonderful disorder.  Now I call it wonderful but anyone living with Epilepsy knows it is anything but wonderful.  That said, I always remember to praise God through every storm, or at least try to, so I tend to look at Epilepsy as a blessing in disguise.  We, as a family, could have been given much worse so I am thankful that God chose to give us something easy enough, for us, to deal with.

This month I am hoping to have a surprise series for Epilepsy, if I manage to finish and have it set up in time.  I will soon post all the info here on the blog and anyone who’d like to join me can feel free to.  For now though, I have a few other priorities that are taking place. 

My very best guy friend is getting married tomorrow and I’m his lucky Best Woman.  I couldn’t be prouder to stand beside my friend and his soon-to-be wife, sweet as they are.  I wish them the absolute BEST in life!  They seriously deserve it!

My little Laycie Bug is now on week two of her dreaded medicine change.  She’s going through the whining phase now, trying to keep from napping though this new medicine (Depakote) is making her so very tired every day around 2pm.  She’s a trooper though and thankfully (PRAISING GOD HERE) she has had no signs of seizure, no breakthroughs, AND best of all her attitude and her appetite do seem to be getting a little bit better by the day.  The real proof that Depakote works for her will come next week after she comes off her Carbitrol on Sunday.  PUHLEEZE PRAY that she continues to do well and that this silly ole disorder doesn’t rare it’s stubborn head and make my sweet baby suffer.  Thanks yall!

Sunday is the day for choosing a winner for my very first giveaway on Luv’N Lambert Life.  Brittany Hargest’s Love All the Way is up for grabs from anyone who’d like to join in.  There is still time – the giveaway ends at 12am Sunday and the winner will be announced later that day.  I wish all of you the best of luck!  But if you don’t win, don’t worry more giveaways will be announced soon – very soon one AMAZING Christmas movie giveaway will be announced so stay tuned!

Well that’s our update for now.  I will be creating more new posts both with the giveaway and the announcement of my special plans for Epilepsy Awareness Month, very soon.  For now though I’ve got to get some sleep.  I’ve got a rehearsal tonight and the best friend’s wedding tomorrow.  Going to be a busy weekend for me.  Hope you all have a wonderful weekend yourselves!

Dana

Epilepsy Update {Epilepsy Awareness}

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Next month is Epilepsy Awareness month, but every month I battle my own awareness of this disorder. For those of us who live daily with Epilepsy, we know that the awareness it exists never goes away. Seizures appear with no warning on the days when we least expect it. It does not judge or discriminate. It attacks unexpectedly, even the littlest of us.

My youngest daughter had a neurology check-up earlier this week. Her doctor said she is doing very well. Her seizures have been controlled for the last year with only mild setbacks. Her speech and vocabulary have increased by giant leaps. She is thriving at age 3.

Her medicine, Carbitrol SR, is still making her cranky after taking it. Her appetite has decreased. Her ADHD and OCD is off the charts. All are common side-effects of her medication and I hate seeing my baby suffer from these things.

With this check-up, I gave our neuro a choice to give us something right away if she had a suggestion to try or to take 6 months to find us something else to try to give my daughter back her full life without side-effects. I’ve lived with this disorder, raised a daughter with this disorder and now I’m raising another daughter with it too. I know the risks involved in changing medications and the risks involved in not taking medication. I was shocked surprised that the neuro was more than willing to switch the baby’s medicine right away and I was estatic thrilled that she was in agreement.

So today, my little bug started a new medication: Depakote.  This medicine will hopefully control her seizures and help her ADHD and mood issues.  I am praying that it works without any complication, that it gives me my precious girl without the crankiness the other medicines have caused, without the sleepiness and without suddenly stopping controling the seizures as the other medicines have been known to do. 

Medicating Epilepsy is like tossing dice.  You never know what the outcome will be.  It’s a bet, a gamble, a try.  There is no sure “cure”, no right thing to do.  Being the parent of a child with this disorder is awful.  Knowing there is nothing you can personally do to cure this or to help your child through this, is the worst feeling I know.  It is a heavy cross to bear but at the same time it IS bearable. 

I am blessed and I love all three of the beautiful children I have carried with all of my heart.  I do my very best by them.  I pray daily for their happiness and well-being, for this disorder to go away.  God chose us to carry this and God has blessed us daily in this.  I know we are lucky for this not to be worse than it is and I am thankful we are so blessed.

It Could Be Much Worse {Epilepsy Awareness}

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I am a member of several different groups online.  Many of which are for parents of special needs children and several for Epilepsy.  Even though I love to participate in them, some days it hits me more than others just how LUCKY we are with this disorder.

My children’s seizures have always been controlled, for the most part, by medication and environment variable control.  My own seizures have always been controlled in the same way.  Other families are not.  Other families have children who have to take 3 or 4 or more medications.  Other families have children who must have an electronic device to help them control this disorder.  Other families have children who must endure a massive surgery removing a portion of their brains, risking so many complications. 

I hear of these children every day.  I pray for these children every day.  I thank God that my children are blessed not to need these things.  I thank God that we can control this disorder simply.

I am often asked how we handle having two daughters with Epilepsy, especially when I have it myself.  God has a chosen to bless me with these children and I’m thankful that He gave them to me.  I have never let this disorder get me down and I refuse to let it rule my children.  I know, from seeing others, that we could have it so much worse.  I know that one serious neurological episode, one serious tramatic event could change our life forever.  I know someday I may have to make the decision to remove a portion of my daughters’ brains.  But I have Faith that God is in control of this disorder and will take care of my girls just like he has me. 

I do not limit them from enjoying their lives but they are aware of their disorder, as I have stated in previous posts.  I make them aware in the case they realize its happening as they grow up.  I make others aware so that they know how to deal with their Epileptic activity if something was to happen while they are around my daughters.  I make others aware so that my girls can live as normal a life as possible.

I don’t always talk about this disorder.  Some days I wish I could just hide it away and ignore it exists.  Some days it’s easy to do but naturally I am always looking for the signs: the tiredness, the staring episodes that sometimes lead to a convulsion within a few days, the stuttering, the forgetting of things they know how to do but because of their disorder can’t remember.  All the effects that this disorder causes to happen often in our lives. 

I remember once when Emmalee was 2, she climbed to the top of her baby slide like she did every day but she couldn’t remember “how” to slide back down.  It broke my Momma heart to see my sweet girl “forget” and know she couldn’t help it because that is something this disorder does to you.  It broke my heart more to watch her lay seizing, knowing their was nothing I could do to help her the next day. 

And still I’m reminded daily that it could be so much worse for us.  My girls could go into a seizure and not wake one day.  However, I can’t dwell on what could happen, no more than I can dwell on what has happened.  As their Mom, I must make sure that they don’t either.  This is why I try to provide them with as much normalcy as possible.  Why should their life be any different just because they have Epilepsy?  We must make a few exceptions and changes for them to co-exist normally but no more than someone would for any child.

I’m thankful for each normal day my daughters are able to have and pray that they are able to live their lives without too much complication.  Only time will tell if that will be allowed but for now we are simply maintaining our day to day life and living as if tomorrow brings the cure to this lifelong disorder that we carry.

God bless! <3

Chats with my Daughter {Epilepsy Awareness}

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Today my oldest daughter and I had a chat about her Epilepsy.  She is eight and has had this disorder since she was three months old.  She doesn’t remember a time when this disorder was not part of our daily life.  It is all she’s ever known.

Recently, she has been making mention of things she can’t do having Epilepsy.  In several recent conversations with her brothers, I have heard her make mention that she is not able to hit her head.  Though this is true, her reference was that she was unable to have even the smallest tap to her skull or she’d immediate go into a seizure.  I immediately realized that my sweet eight year old was confused and needed to have a chat about “E”.

I sat her down and explained to her that yes, we do have Epilepsy and reminded her that I have it, as well as her baby sister.  I explained to her that this disorder should not stop her from trying to do anything she really wants to.  That, within reason, she is able to fall, hit her head, and try until her hearts is content.

She has told me that she wants to learn to ride a horse.  While this does make me nervous I will not prevent her when the time comes.  I will provide her with a helmet along with a skilled rider to guide and teach her.  I want her to do these things that God calls her to enjoy. 

She has learned to swim recently and is learning to hold her breath.  I worry that something will happen, like any good mother, but I want her to swim so that she can go deep sea diving some day if her heart desires.  I want her to enjoy whatever experiences are offered into her life.  I cannot allow this disorder to hold her back. 

When I was a child, I was prevented from doing many things because of my own Epilepsy.  I was not allowed to try when I should have been.  I was not provided this chances out of my Mother’s fear of losing me to my Epilepsy.  I do not want these same things for my daughters.  Instead, I want them to live this life to the fullest, taking only the necessary precautions and never missing out on the gifts that God provides them.  Had I listened to the naysayers about my own Epilepsy, my girls would not exist because I was not even supposed to chance childbirth with them.  Listening to my heart and my God provided me with three of the most beautiful blessings I could ask for. 

Our talk today reminded me how much this disorder does still affect my sweet girl.   It reminded me that she is growing up and needs guidance as to why we take precaution, as well as why I do allow her to live her life to the fullest, as normal as she can. 

Epilepsy is a part of our life, but it is and never will be all of our life.  I cannot live in fear that a seizure may come, but I can live aware of that and provide that awareness for my beautiful girls, while still allowing them the most normal of life. 

And that is the plan.  I’m sure there will be more talks about Epilepsy over our lifetime, just as there was for me with my Mom.  I’m thankful to have lived with this disorder all of my life so that I am able to provide the patience, guidance and love needed to all of my children.  It’s not been an easy disorder to live with but we are “blessed” to know what it is and what to expect, as well as how to continue to live with it and prepare ahead for the next generation, which it may or may not be passed on to.  For now, I’m just thankful for talks with my sweet girl, to be able to help and encourage her in her life’s goals, even while living with Epilepsy. <3

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