Luv'N Lambert Life

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

seizures

No Miracle Cures {Epilepsy Awareness} {Epilepsy and Essential Oils/Natural Treatments}

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As a Mom with Epilepsy, raising children with Epilepsy, I try my best to treat my children as naturally as possible with as little medications as we can have.  This has been a huge challenge to do and it’s taken me a lot of personal time and research to find what does and doesn’t work for us.

Truth is, there is no miracle fix for this disorder.  I wish there was.  There is no easy self-remedy.  There is no exceptional hidden method that will heal, prevent or change this for you or your child.

I cannot tell you what to use for you or your family.  I cannot suggest any method to make this go away.  I can only share with you what has worked for us.

There are many alternative treatments available for treating Epilepsy.  There is also medication which sometimes is the best thing you can do for yourself or your loved one. Medication is always our first choice for treatment but when medication alone didn’t work, I began to research alternatives which lead me to create the Facebook group, Epilepsy and Essential Oils/Natural Treatments.

In our group, I share what things I find online that I have personal found helpful or I think others may find helpful.  Many of these treatments I have not tried myself but I do see others in various Epilepsy groups who may have given it a try.  Sometimes the alternative treatments work and sometimes they don’t.

You see alternative treatment is just like medicine.  What works for one person or family will not necessarily have the same results for the next person or family.  We’re all different.  We all metabolize medications, herbs, essential oils, etc differently.  Therefore, all medications and alternative treatments are trail and error.

But don’t give up hope that you will find something that helps your loved one or yourself.  There’s always a chance that the one thing you try helps you have a better life.  There’s always a chance that you will discover that “miracle” treatment you need for your loved one.

For us, that was Essential Oils.  When my son was medication resistant Essential Oils gave us back a small part of normalcy and allowed him to get through his seizures with less stress.  It wasn’t a 100% fix for him but it was hope and a small blessings none-the-less.

The one thing I have learned on this journey with Epilepsy is that we are the best researchers and advocates for our loved ones but we must have a solid, trusting relationship with our neurologists as well.  I listen to their advice just as much as I follow my own gut on this.  And it has led to us being able to find stable treatments for my children and myself.

Do your own research as well.  Follow the instincts you were born with.  Search until you find the answers you seek.  If you feel strongly there’s a better way, then you’ll usually find there is.

Many blessings,
Dana Lambert-Hodge

July Update {Epilepsy Awareness}

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It’s been a while since I updated.  Life gets busy and there is just no time for getting on here right now.  I would love to change that but I’m not sure how to make that happen.

There’s a lot that I don’t post, that I don’t talk about.  I do my best to focus on the positive and to avoid the negative.  But sometimes that’s hard to do.  We all want that perfect life, to put on the front that everything in our lives is glorious and amazing but when it comes down to it, we’re just putting on a face that is not real.  That’s the face I’ve had plastered on for a while.

It’s hard being a Mom of four kids, even harder being a Mom of kids with Special Needs with 3 of the 4 having Epilepsy.  It’s hard to wake up praying that this morning, on this day, your child will not have a seizure.  It’s hard holding your breath when your son begins to cry, to rush to console him and meet his needs so he doesn’t drop into an Involuntary Breath Holding Spell and have the accompanying seizure.  And when it does happen, you simply pray for it to be done and over with so that as a parent you can return to breathing again.

Yea, I hold my breath a lot.

You cannot understand my life.  You cannot understand what it’s like to watch your child lay lifeless.  You will never understand what it is like to see your child lost in a seizure that lasts 13 hours straight, wondering if the medical team is going to get it to stop with the multiple medications they’ve injected.  You will never understand what it’s like to wonder if your child’s seizure will ever stop, if it will cause brain damage or other irreparable damage.  The only ones who do understand the truth of this are those who love and care daily for someone with Epilepsy.

The real truth is that any day I could have a seizure that leaves me laying in a vegetative state, or dead.  Any day my children can have a seizure that leaves them the same way.  I hold my breath with every seizure that hits us.  I patiently wait for them to end.  I wait to see what damage is done and I’m praising God every time it’s over with no issues.

As a family, we’ve been extremely lucky.  There are others who aren’t as lucky as us.  There are many who don’t make it through.  I don’t know why God blesses me to because any day that family that loses their loved one to a seizure could be us.

My biggest fear is losing my children.  My biggest fear is having to bury one of them and never being able to love and hold them again.  I know one day I will see them in Heaven but it doesn’t ease the missing of them here on Earth.  Every day I pray I never see this fear come true in my life.

This is my day to day.  At this point, the kids are well.  Laycie is controlled on her Lamictal with no rashes and her appetite has returned.  Except for her ADHD being aggravated a little and her 7 going on 27 attitude, she’s doing wonderfully.

Jackson is currently off medication.  His doctor was hoping he had outgrown his IBHS but he hasn’t.  With the stopping of medication, his IBHS has returned along with the seizures.  We are waiting for a repeat EEG next month before attempting medication again.  I’m praying he does well until then.

Winston and Emmalee are doing very well.  I wish time would slow down because they are definitely not babies anymore.  Kids grow up too fast.

Laycie’s genetic results came back.  She has four possible abnormalities but one particular that the geneticists believes may be our familial culprit for Epilepsy: gene PRRT2 which is known to trigger seizures in children.  It is now being tested against my blood sample to see if it’s a viable choice.  Determining this gene allows for us to have better treatment options for now and also future generations and that truly makes me excited.

Well that is the update for now.  Not much else has been happening.  Until next time…

Lucky While Living Cursed {Epilepsy Awareness}

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Today someone mentioned that families with history of Epilepsy are lucky.  That’s a big word: Lucky.  It means to be fortunate.

  1. luck·y  

    /ˈləkē/

    Adjective
    Having, bringing, or resulting from good luck: “a lucky escape”.
    Synonyms
    fortunate – happy – successful – providential

People assume that because a family, like mine, has 5 generations that have Epilepsy and that because I have three children who have Epilepsy, that I am fortunate because I have prior case history to go on and I know where our Epilepsy is coming from.

Let me tell you, that could NOT be further from the truth.

It is true that we do have a strong family history with Epilepsy.   We were lucky to know what this disorder was when my Emmalee began showing signs of seizure.  I was not a satisfied Momma when she was initially diagnosed as having Febrile Seizures and I did not rest until we had the correct diagnoses.

I was lucky to know that I had had this disorder, to know of the signs, the stigmas and the common misdiagnoses of this disorder to be something less.  I was lucky to have a Mother who had suffered through night after night of wondering if I was ever going to wake up in the morning, if I was ever going to be a “normal kid” or if I was going to wake and go into a seizure without her knowledge.  I agree, I was very lucky to have those things.

Her knowledge of this disorder helped get me through, but honestly, we are no farther in knowledge with this disorder than we were 34 years ago when I began having seizures myself.  We are no farther along in knowledge than my Great-grandfathers family or my Grandfather’s mother was when he went through this as a child.  We are no farther along in knowledge than we were when my Grandfather was on three separate medications in an attempt to control this Monster that even now they do not understand.

I am NOT a lucky Momma to have this family history.  Having more than one child with Epilepsy does not help me to understand this any better than it did the day I had one child with Epilepsy.  What I’ve learned past how to deal and the strength I’ve gleaned from my Mother in dealing with it, I have taught myself.

I listen to my children’s neurologist.  I grasp any tidbit of information they have to offer.  I can sense when they are full of crap and my motherly instincts are rarely wrong.  I force them to listen even if it takes multiple visits or me taking my child’s care into my own hands to make that happen.  I do what I must to get my babies the best care possible.

Fact: There is NO CURE for my children.  I’ve known this for a long, long while.  It was confirmed by our neurologist last week, not without care but in an effort to tell me the truth.  It wasn’t a truth I didn’t already know.

Genetic disorders pass through from generation to generation on a gene.  Generally, they skip generations, passing down the line but not activated.  Patterns like Uncle: niece, Grandparent: Grandson and so on are the common inheritance.  It’s very rare to pass from generation to generation directly without there being a gene that causes it.  And it’s extremely rare to pass through for 5 straight known generations (we do not truly know how many generations before my Great-grandfather have had this disorder as there is no record).

Because this disorder is passed on a gene in my family, there is NO CURE for us.  We cannot edit genetic inheritance.  We cannot choose DNA.  It’s a flip of a coin as to which child will pass this on and how many of their children will have it.  I know at least one of my grandchildren will inherit this.  I know most likely at least one of each of my three children’s children will have it.  That’s 3 grandchildren, at least, possibly more that will go through this and there isn’t a cure for them.

It can be controlled.  A cure could be found for my children dealing with it in their lifetime.  I’m not saying that.  What I am saying is that it won’t stop with us.  It will travel on and curse the next generation with it’s terror.

I may be fortunate to have known what this disorder was for each of my children to start, but as I’ve already stated, I know because I’ve taught myself.  The records of my relatives before me are not accessible and even if they were, I doubt they would provide much information.  This disorder was hidden from the world.  It was not and is still not understood by even the doctors trained to provide care for it.  There is no wealth of  wisdom to glean from the past history that we have.

Each and every one of my children’s cases are different.  Each and every one has been treated like a first time case with no common connection.  I am currently pushing for answers, for comparisons, for more information on this disorder and how it relates to us.  My goal is not for a cure, but for understanding of how this disorder works and how it affects my family.  I plan to pass this on for my children’s future and their children.  I plan to arm them with the knowledge to live through their lives with this and be empowered along their path.

This is their life with Epilepsy and the only luck they have is a Momma who will provide them with all she can in preparation for their future in living with this.

A New Doctor {Epilepsy Awareness}

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The long awaited diagnoses is in: Jackson has seizures.  In our world, we call it Epilepsy as seizures are Epilepsy and vice versa.  He does NOT have Apnea as the neurologist first suggested.

Wednesday, both Jackson and Laycie went to the doctor for a double appointment.  We will have a lot of those in the future.  Hope they are ready for us!

Laycie’s checkup went first.  He stated she looked great.  He was as concerned with me over her seizure breakthroughs.  He said that he felt that she was being under-treated for her Epilepsy.  He felt she was not on a high enough dosage for control with all the activity going on in her brain.  Apparently, she has a VERY active brain which is no surprise to me!

All joking aside, Laycie’s brain has seizures in the that center around the Rolandic region with what are termed centrotemporal spikes.  The activity in this area is heavy but it is not the only area that shows activity for her.  He confirmed my suspicions that there may be more to it than the simple diagnoses of Rolandic Epilepsy and he is planning to look into the details of that for us.

His choice for now is to raise Laycie’s medicine dosage to 3 pills of Depakote at night and 2 in the morning to see if the breakthroughs become controlled.  If she continues to breakthrough or she has any of the signs of side-effects that we had previously when her dose was too high, then we will discuss the next step which will be switching meds.  His goal however, is to get her to 3 pills morning and 3 pills nightly at this time.

Once he finished up with Laycie and after much discussion of our strange generational family curse with Epilepsy, he moved onto Jackson.  Jax got the same rave reviews of being perfect, as Laycie had gotten.  He was a little concerned with Jax’s minor delays and is interested to see what happens with those as we start on medicines.

He asked that we give Jackson more time to develop his Epilepsy, allowing him to have another seizure before starting him on medications but due to him losing his breath and requiring CPR through his last seizure I was not willing to agree with him.  No argument, he completely understood.  So he sent us home with a script for Jackson for Trileptal.  We are starting off very slow and building up so that hopefully (fingers crossed) Jackson won’t have the same side-effect issues as Laycie had on the medicine.  He is aware of those effects and is willing to switch Jackson at any sign of them rearing their ugly head!

We left the office with a new neuro that I feel confident in.  He was great with both of the kids, made Laycie smile and happily answered all the questions I had, as well as held intriguing discussions on other issues dealing with the Epilepsy.  He learned from us and we learned from him.

We came home, filled prescriptions and immediately began treatments for both kids.  Laycie is awed at the size of her new medication bottle!  It’s super tall!  So far she’s doing great with the increase.  She was a little bit whiny today but it takes about a week for the tiredness and crankiness of the adjustment to stop.  I forsee naps for us in the next few days.

Jackson began his meds last night and is doing great with them so far.  He’s a little more tired than normal but acts like he can’t go to sleep at naptime.  He’s showing no signs of forgetting anything he knows or stopping speech which were issues Laycie had while taking Trileptal.  Since starting his seizures, he’s not been sleeping as well so I’m really hoping the medicine does help with that, so long as he doesn’t have delays from it.

We do have to keep a close eye on them both right now and we are doing that by splitting tasks.  Momma is sleeping near to Jackson and caring for him, while I am sleeping next to and caring for Laycie.  We split help from Winston and Emmalee and Josh when he’s home.  I’m so thankful to have children who are understanding, caring and so helpful with their siblings as mine are!  I cannot express how blessed I am by every single one of my children.

We are thrilled with the new doctor, the new changes and the new outlook on this disorder we are forced to live with.  Everyone is doing well for now and hopefully I can catch a break to rest a little while.  I am one exhausted Momma.

And So Jackson’s Journey Begins {Epilepsy Awareness}

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Everyone keeps asking me how I am today and at this very moment all I want to do is SCREAM.

Honestly, just scream and let it all out.

I have four beautiful, awesome, amazing children who I love to pieces.  I’m so thankful to have every one of them.  Thankful for the impact they make on my life.  Thankful to have the blessing of them to love and cherish daily.

Yesterday, I was the Momma of two children with Epilepsy.  In the blink of an eye, I became the Momma of three children with Epilepsy.  Three out of four of my babies carry a gene that has caused their brains to shut down in a convulsion.

I sit here letting that sink in.  I’m in shock.  I’m lost.  I don’t even know how to process that information at this time.

For 10 months, I’ve watched Jackson closely for any signs of seizure.  I began to breath a little easier as we passed the 4 month mark when his sisters began their journey with Epilepsy.  The older he became the easier I began to breath.

Last night, Jackson had his first seizure.  It happened around 8 pm while I was out of town.  He was with his Grandma.  She said she changed his diaper and suddenly he rolled to his side in a ball.  His tongue curled, his eyes rolled into the back of his head and his little body went limp as he stopped breathing and turned blue.  She said it only lasted a minute.  He was unresponsive afterwards, then came to again.  After a few minutes he went completely limp again.

I rushed to the hospital as fast as I could.  I was told that as soon as he was brought into the ER, he was rushed back and the nurse and staff all agreed it was a seizure without doubt.

When I arrived at the hospital, Jackson was crawling across the hospital bed like nothing had happened.  He had his right arm wrapped into a bandage with an IV but he was smiling and happy as if nothing had gone on.   He amazes me.  All my children do.

We were sent home with the diagnoses of a seizure and the advice to follow up with our Pediatrician and our Pediatric Neurology team which we have today.  His appointment with his Pediatrician was at 1:30 pm today and went wonderfully.  He weighs 17.2 lbs and is 29inches long.  They immediately called into MUSC Pediatric Neurology and we had a scheduled appointment before we left today.

So far, Jackson continues to do well, though he’s extremely sleepy today.  We are letting him play, eat and rest as he pleases.  The ER doctors and Pediatrician did not prescribe medications for him simply because they wish to leave that up to the neurologist to do.

I’m feeling numb in so many ways.  I want to scream and yet I feel so blessed to have been giving three children with this disorder to care for and love.  Does God really think I am capable of handling such a heavy task as this is?  He must because it’s here and there’s no one else to do it but their Momma.

I keep thinking that and I keeping thinking he must think me a Saint, a person of strength.  But I surely am not feeling that way even though my mustard seed of faith tells me that He is with me and He will carry me and my babies through this.  Weak and loved I am today and always. Weak and loved by God himself.

The Darkness That Lurks {Epilepsy Awareness}

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How do you do it?
How do you tell your baby, one of the prettiest, sweetest girls you know, the child whose older sister proclaimed as our angel the day she was born, that she won’t die?  How do you even deal when those words come from the mouth of your beautiful 5 year old daughter?
My Momma heart breaks for her.  My Momma heart wants to scoop her up and hold her tight and keep her safe forever.
I want to SCREAM.  I want to SCREAM to God, “WHY?!  Why my daughter?  Why my precious baby?  Why does she have to suffer with this?  Why does anyone suffer?”
I can’t reassure her that she will wake up from the next seizure.  I can’t reassure her that there won’t be another one.  I can only tell her about Heaven and all the great things that await her there.  Even when I don’t want to because I pray deeply and hard that she will not know for a long, long time.
“Momma, who turned out the lights?”, she asked me. “Was it you?” “No, baby.”  “Was it Daddy?  Why would Daddy cut the lights out on me?” “Daddy didn’t, angel.”  “Oh, Grandma did it then!”
All this past week she has been terrified of the dark.  It didn’t take me long to figure out what she meant.  Her whole little safe world went dark last Tuesday morning.   She couldn’t see for almost an hour.  Her eyes dilated so much that she wasn’t able to see anything but a black abyss.
And it hits me: just how terrified she was.  That this seizure affected her sight so badly.  That the next one could honestly leave her blinded for good.  That I’m thankful this seizure didn’t leave her blinded for life.
It hits me that she could have died last Tuesday.  That she stopped breathing on me.  That there was nothing I could do and no amount of CPR could stop her brain from overloading and her body from seizing.  It had completely taken control.
All I could do was watch and pray.  All I can do now is wait and pray.  I do daily and she has prayed too, wholeheartedly.  We all have.
Tomorrow morning, or rather in a few short hours this morning, at 7:30 am, it will be one week from her worst Grand Mal since she was 4 1/2 months old.  One week has passed.  Multiple conversations to make her forget and feel more at ease have happened.
Every day we have the same talk.  “Momma, it was dark.” “I”m so sorry, Laycie.”  “But you didn’t turn out the lights on me?” “No, baby.” “You will keep on a lamp for me.” “Always, if it makes you feel better.”
And I do.  She sleeps in the bed with us for now, until we know this monster called Epilepsy is controlled again.  I leave the light on for her and for me.  It helps me see if she’s breathing.  It helps me see if she’s a little too still.  And it puts her little mind to ease.
I don’t know what the future holds.  I don’t know how to calm her fears other than talk with her, listen to her, be with her, every waking and sleeping minute.  And pray, for her and with her every time she needs to do that and even when she isn’t even aware I am.
I’m thankful that God has blessed us with more time.  I’m well aware of the Mothers that weren’t given that chance.  My heart aches for them and for all the Momma’s who must watch their babies suffer so much.
For now she sleeps, though it’s still very much restless and we wait patiently to see if this monster is lurking or controlled for now.  Only time will tell.