How To Help A Seizure Victim

Being new to the epilepsy world, I don't know if the word victim, in reference to someone having a seizure, is politically correct.  But, it's really the only way I know how to word it at this point.  And, for those of you who know me, I'm not all that concerned with being politically correct anyway.

My last post gave lots of information about the different kinds of seizures and I promised to follow up with information on how to help somebody who is actually having a seizure.  So, I'm going to restate the ways a seizure can present itself and then give ways to help after each one.


1.  Loss of Awareness/Consciousness (focal seizure) - A person suddenly interrupts an activity and stares blankly.  This may or may not be accompanied with fidgeting, like playing with fingers or buttons or lip smacking or chewing.  This can also cause strange sensations like smells or tastes.

If you come across somebody who is having a focal seizure just stay with them until they regain consciousness.  Time the seizure for them so they know approximately how long it lasted.  Once they regain consciousness ask them basic questions regarding their name, the date, etc....   Ask them if there's anybody you can call to sit with them if they need time to recover.  Stay with them until you know they are fully recovered as these seizures can sometimes be followed by tonic clonic seizures.

2.  Partial Body Convulsions/Involuntary Movement - Only part or one side of the body convulses or jerks, often rhythmically.  Sometimes people may collapse due to the kind of movement caused by the seizure.

Again, stay with them.  Time the seizure.  They may or may not know what's going on.  If they are unable to respond to you and the seizure has lasted more than a few minutes, it may be necessary to call for an ambulance as emergency medication might be necessary.  (I'm not as familiar with this kind of seizure, but it's always better to be safe than sorry.)  Once the seizure ends, stay with them until you are reassured that they have received the help they need.

3. Full Body Convulsions/Involuntary Movment - The entire body is convulsing or jerking.  The most obvious kind being Tonic Clonic (Grand Mal), which is a constant convulsion of the entire body. 

If a person presents with a full body, constant convulsion type of seizure, they will be completely unconscious and unable to respond.  First, clear the area, where they are laying, of any objects that they could bump into and cause injury.  Then, if possible, turn them to their left side and tip their chin down just slightly (as in CPR) to open up the airway.  Keep a hand on them and speak calmly to them.  Reassure them that they will be okay. And, in the mean time, time the seizure and call for emergency assistance if it lasts more than a few minutes.  If these seizures last too long, they could cause brain damage due to a lack of oxygen to the brain.  Stay with them until somebody they know is there to help.  This kind of seizure will often cause muscle pain and weakness as well as extreme fatigue once it's finished, so they will need assistance.  One other thing that everybody should know about tonic clonic seizures or any seizure for that matter.  People CANNOT swallow their tongue if they're seizing.  DO NOT EVER put any object in their mouth to hold their tongue down.  It could seriously injure or even kill them.  Like everybody else, they need their mouth clear of objects so they can breathe.


So, there you have it - the basics to handling a seizure.  Please know that I am not a physician and that I am new to the world of epilepsy and seizures.  This is the basics as I understand it.  I'm sure that when it comes to describing the types of seizures I've given some inaccurate information.  But, like I said, we really just need to know how to respond and I just told you everything the hospital told me so I should be good on that side of things.  The important thing is to be there for the person, help keep them safe, time the seizure and call for medical help if necessary.  And again, don't put anything in their mouth.  EVER.

Seizures

Like I said in my last post, over two million Americans struggle with epilepsy.  The problem is that most people wouldn't know what to do if they came in contact with somebody having a full blown tonic-clonic (grand mal) seizure.  It's a scary thing that I haven't personally experienced and I honestly hope I never do.  But, because of my sons condition, I have to be prepared for the worst case scenario and so should you.  And once you are prepared, not only could you help a person who is having a seizure, I can also add you to my babysitting list.  It's pretty short, at this point, for this very reason, and I wouldn't mind having a nice long date with my honey.

With that, I want to share with you what I know about seizures.  My seizure knowledge is actually pretty basic.  I watched a couple of videos about seizures before Levi was released from the hospital in July and other than a couple of questions to Dr.Q. that's all the training I got.  But, it's really all I needed.  So, I'm going to share that with you.

Seizure Basics

There are several kinds of seizures that each present differently.  I stole the following chart off of WebMD.

Generalized Seizures (Produced by the entire brain)	Symptoms
1.Tonic-Clonic "Grand Mal"	Unconsciousness, convulsions, muscle rigidity
2. Absence	Brief loss of awareness, can include fidgeting
3. Myoclonic	Sporadic (isolated), jerking movements
4. Clonic	Repetitive, jerking movements
5. Tonic	Muscle stiffness, rigidity
6. Atonic	Loss of muscle tone

Partial Seizures (Produced by a small area of the brain)	Symptoms
1. Simple(awareness is retained) a. Simple Motor b. Simple Sensory c. Simple Psychological	a. Jerking, muscle rigidity, spasms, head-turning b. Unusual sensations affecting either the vision, hearing, smell taste, or touch c. Memory or emotional disturbances
2. Complex (Impairment of awareness)	Automatisms such as lip smacking, chewing, fidgeting, walking and other repetitive, involuntary but coordinated movements
3. Partial seizure with secondary generalization	Symptoms that are initially associated with a preservation of consciousness that then evolves into a loss of consciousness and convulsions.

So, as you see, there are ALL KINDS of seizures.  I honestly don't completely understand how everything is categorized, but the way I understand it is that seizures can cause three basic categories of physical reactions and it's the reactions that we need to be aware of, not the fancy names or what exactly is happening in the brain.  So here they are, in my own words:

1.  Loss of Awareness/Consciousness - A person suddenly interrupts an activity and stares blankly.  This may or may not be accompanied with fidgeting, like playing with fingers or buttons or lip smacking or chewing.  This can also cause strange sensations like smells or tastes.

2.  Partial Body Convulsions/Involuntary Movement - Only part or one side of the body convulses or jerks, often rhythmically.  Sometimes they may collapse due to the kind of movement caused by the seizure.

3. Full Body Convulsions/Involuntary Movment - The entire body is convulsing or jerking.  The most obvious kind being Tonic Clonic (Grand Mal), which is a constant convulsion of the entire body. I'm pretty sure that Levi's seizures fit in this category. They were not tonic clonic as he was not constantly convulsing.  But, although it looked like only his head and arms were moving, when I held him I could actually feel his entire body jerking with each seizure.

A person's seizures can present in just one of these ways or in multiple ways.  For instance, it is not uncommon for a focal (staring) seizure to be followed by a tonic clonic seizure.

So, there you go.  That's everything I know about seizures and what happens if somebody is having one.  And, no, I didn't share what you should do if somebody is having a seizure.  This post is getting to be pretty long so I guess you'll just have to stay tuned!

Epilepsy Awareness Month

November is Epilepsy Awareness Month so I've changed my blog decor to hopefully help bring awareness.  I know, I should become a graphic designer, right?  Maybe not.  But, maybe the fact that I did a terrible job redesigning the look of my blog will draw attention to my cause.  Hey, negative attention is still attention!  Although, if anybody has any tips or wants to completely take over and make it look better just let me know.  I will let you do it.  As long as you make it look better....

Anyway, like I said, it's Epilepsy Awareness Month.  So BE AWARE!!  You never know when you might come across somebody who is having a seizure and needs YOUR help.  You can get educated about how to handle a seizure by taking the "Get Seizure Smart" quiz right here.  So, go ahead, take the quiz and I'll send you a piece of candy.  I really will as long as you let me know and tell me where to send it!  Please don't post your address in the comments section, though.  Not a good idea.

Along with posting about Levi's progress, this month I will be offering tips and facts about epilepsy and how you can be a support to the 2+ million Americans who suffer from this often debilitating condition.

In the mean time, Get Seizure Smart!!

NEVER

This has not been an easy year in the Luntsford house.  It all started last September with Toby, two at the time, in the hospital with pneumonia while we were at a conference out of state.  That was followed by five straight weeks of sickness, ranging from sinus infections to the stomach flu, from late October to mid December.  We had a break through the rest of winter, but, in March, we discovered that my husband had a blood clot in his leg, which can be life threatening if it's not resolved quickly. He had shots to thin his blood every day for almost three weeks and then went on medication to keep it thinned so the clot would fully dissolve.  Except for one week, we either had house guests or were traveling from the last week of May to the second week of July.  The third week of July we were in the hospital for a week with Levi and the seizures.  And to top it off, I turned thirty in June.  I did NOT want to turn thirty.  But, just like the rest of the craziness that I didn't want, it happened anyway.  I can't change it.  I can't make it go away.  The only thing I can affect is how I respond to it all.  And, the only way I can respond is to remember that through it all my God will NEVER leave me or forsake me.  For my last post, I shared the lyrics to a song that has helped to carry me through this time.  I found it on YouTube and wanted to share it here.  Whether you're having a hard week or a hard year I want to encourage you to take some time to focus on the goodness of God.  He is NEVER changing, NEVER failing, NEVER giving up, NEVER leaving, NEVER forsaking.  He is only good.

The "A" Word

So, we had Levi's latest check up this past Friday.  Overall, it went very well.  He got to wear a hat with the electrodes for the EEG instead of having thirty-two electrodes individually super glued to his head and then individually scrubbed off leaving bits of glue and removing bits of scalp.  That was nice.  The wait was much shorter this time.  The EEG was at 7:30am and the checkup with the doctor at 12:45pm instead of 4:30pm.  Also nice.  We got home in time for dinner.  Very nice on the wallet.  The four lane highway, on the way there, that has been under construction for almost ten years, was finished, cutting about twenty minutes off the drive.  Very nice.  Like I said, overall, it went very well.

The appointment itself was pretty normal.  Dr. Q took well over an hour with us, which I greatly appreciate. Nothing worse than driving and waiting for seven hours to spend ten minutes with the doctor.  Not only did he give us lots of time, but he also remembered specifics about Levi and his case that I would never remember, especially if I were a neurology resident working thirty hour shifts (which he does do).  When I commented on that, he said, "Of course I remember. Levi is is special."  Have I mentioned that I LOVE Dr. Q?  Well, I LOVE him.  He makes me feel like Levi is not just an interesting case study, but an actual patient - a valuable patient.  I like that.  I want to hug him for that.  Would that be awkward?  

So, anyway, the appointment went well.  We reviewed Levi's EEG.  Where it previously showed activity that could cause seizures on both sides of his brain before, this time it showed the seizure potential was only on the left side.  Dr. Q didn't want me to be too excited about it because apparently the right side could have just been taking the day off of producing potential seizure activity - my words, not Dr. Q's.  His words - "I'm not quite sure what to think of it."  Okay.  I'll just believe that God is healing my baby.  But, I'm not going to freak out if next time it shows activity on both sides again.

As well as discussing the EEG, we also discussed medication.  We had to increase his meds which kills me a little bit.  But, Dr Q says that he's already being risky by giving Levi very lowest doses possible so even the slightest weight gain requires more meds.  So, I guess I understand that.  I prefer meds to more brain damaging seizures, or seizures of any kind for that matter.

The last thing we talked about was the "A" word - autism.  This was the hard part of the appointment.  As with any case of spasm type seizures, Levi is being constantly observed for traits that fall in the autism spectrum.  There are three of them - language delay, repetitive movements, and social delay.  According to Dr Q, Levi has two of the three - language delay and some possible repetitive movements.  He is recommending that we increase his therapies, especially speech, so we can be on top of it, rather than just treat it.  Mama doesn't like to hear this.  I'm happy to know he is actually quite high on the social scale, which is usually the hardest thing to deal with in cases of autism, but it's still not a nice conversation to have about my son.

To clarify - he has NOT been diagnosed with autism.  At this point, he only has two of the three traits and one of those, repetitive movement, is unclear.  He has to have all three, I believe, to be diagnosed.  But, that he doesn't have all three traits, apparently doesn't mean he won't develop social issues later.  So, we have to watch very closely.  I don't like it.  Just thinking of the possibility of my baby having autism is devastating.  It could make that suddenly steeper hill even steeper and higher, like forever higher, as in life-long struggle higher.  As in, everything I thought about how my life would be has just changed higher.  You never realize how many expectations you have for life until you realize they may not happen.

Now, the good news is that even if the "A" word is an issue, we'd be starting interventions very early which would give him a high chance of living a pretty normal life.  So, I'm not freaking out.... too much.  But, I will be honest, I feel like I'm going through a grieving process.  Either way, my life has changed, and forever, for the bad and the good.  It will never be the same.  Ever.  But, do you know what will be the same? Or maybe I should say WHO will be the same.  My Father God.  He is the same yesterday, today and forever!  He doesn't change!  He is good!  He has a plan!  He is Abba - Daddy God.  Forever.  Period.

With that, I'm going to leave you with the words to the chorus of a song that has carried me through this week:
Afterall, You are constant.  Afterall, You are only good.  Afterall, You are Sovereign.  Not for a moment, will you forsake me.

I'm so glad I can trust in Him!

JACK

Wow, it's been forever since I last posted anything.  I was out of town for, essentially, two weeks with just a little break to come home and do laundry before leaving again.  It was a fantastic two weeks, though!  And well worth the time away from my computer.  I probably needed a little disconnect from my little electronic universe anyway. :)

On top of being gone, my entire family, except for myself, got double pink eye.  DOUBLE.  In both eyes.  Not sure how it skipped over me. Grace of God, I guess!  So, the combination of the two has kept me well away from all of my friends.  I'm pretty sure it had been three weeks since I'd seen anybody until church this past Sunday when I finally saw EVERYBODY and got a dinner invite!  To say the least, I was ecstatic!  Things had been crazy enough that I didn't have the energy to cook a meal for my own family, much less somebody else so free, pre-cooked food and fellowship with good friends sounded like the perfect plan!

So after a chill kind of afternoon at home on Sunday afternoon, we headed over to see our friends, eat some chilli for dinner and watch "Bill Cosby Himself".  It's a classic.  I hadn't seen it since becoming a parent and it was that much more hilarious because of it.  If you haven't seen it, you need to, especially if you're a parent.  That's all I have to say about that.

I discovered something, though, while we were there, mostly watching the video while chasing our toddlers around.  Jack - a beautiful, curly, red haired boy, a ginger in the truest sense of the word - is not quite fourteen months old.  He's your average thirteen month old, in terms of development.  In terms of size, he's ginormous!  He's always been huge and is starting to grow into himself, but he's still huge all the same.  Let's just say this, Levi is eight months older than him and they've worn the same size of clothes since Jack was nine months and Levi seventeen months.  But, in terms of development, he's your average thirteen month-er.

And, this is what struck me.  As I watched Jack play, I realized that some of the things he was doing are things that Levi (twenty-one months) is just now learning to do.  It stung a bit to think that Levi is that far behind in some areas.  I don't think I really realized he was that delayed until that night.  Fortunately, this is not in all areas of development, but it is in some.  The good news is that even if Levi stays six to eight months behind for the rest of his life, eventually it won't be a distinguishable difference.  I mean, it's not like when he's thirty or forty people are going to be thinking, "Wow, he's a little slow for his age.  He's got to be at least, what, six, eight months behind?"  Ha!

But, the hard part is more the realization that I've got two years of raising a one year old mind.  We're having to teach him things we've already taught him.  We're having to rediscover how to discipline him since we're not even sure he knows what's going on at some points.  His weakest area of development (per early childhood screening) is communication, which can be very frustrating.  When you have a kid the size of a two year old who communicates like a one year old, it's frustrating.

So, that's going to be the hard part.  It's going to be uphill for awhile, and I think I'm just now realizing how steep the hill is and that it's a little higher than I thought.  But, it's still nowhere as steep as so many others' hills.  And this up hill battle will not get me down.  How can it?  It's going up!  Besides, the good news is that he WILL catch up sooner than later.  Thank you Jesus for that!

And thank You Jesus for good friends who make food and invite me over to eat it, hassle free!  What a blessing!

He Holds Us

I watched Levi's first birthday video the other day.  I must admit, I never do this.  I'm pretty sure I've never watched Toby's first birthday video, or his second, or his third.  But, three days ago, I found myself perusing through pictures on our computer when I ran into Levi's first birthday folder.  His face was so little, in comparison to now.  I wanted to see all of the pictures and remember what he used to look like pre-steroids.  Granted, it was eight months ago.  But, I was drawn to them all the same when I came across several little video files of presents and cake.  It was his first birthday, so of course we put the entire cake on his high chair tray and let him dig in.  Now, usually, I skip past the videos.  Not always.  Usually, though.  They just take so much more time - something a mom with two small boys doesn't have in surplus.

This time, though, I played the video.  I watched my beautiful boy as he daintily pinched at the frosting on the cake and stayed perfectly clean for the first five minutes.  He had an amazing pincer grasp if you ask me.  :)  I watched as he slowly began to dig in with his entire hand as he realized there was something under that frosting!  I watched him say "Bye Bye" to somebody as they left the room.  He waved his cake-filled hand enthusiastically, spraying cake and frosting all over the place.  Wait, he said "Bye Bye" and waved.  I realized that must have been something he had lost from the seizures because at eighteen months he wasn't doing that anymore. I had forgotten that he had been able to do it at all.  I watched him do a few more things that I wondered if he had lost from the seizures.

 But, then I watched him have a seizure.  Right there in his high chair!  On his birthday!  Six months before we ever saw them!  I replayed that segment of the video countless times wanting to be sure of what I was seeing.  After showing it to my husband and watching it about a gazillion times, my conclusion has stayed the same.  He had a seizure.  And who knows how long he'd been having them up until that point.  We thought that he had started having them somewhere between seventeen and eighteen months.  They're a subtle kind of seizure so we knew we'd probably missed a few episodes, but I never could have imagined that we'd been missing them for six months.

The crazy thing is that usually when babies have been having infantile spasms (the kind of seizure Levi has had) for as long as six months, they are cognitively gone.  I read one blog where a baby had them for just two months and lost all of his words, was not able to walk and four months in couldn't even sit up on his own anymore.  At ten years old, he was considered to have autism and was very behind developmentally.  I think about the few things that we were concerned about with Levi's development, but it was just a few and he's catching up so quickly.  He's almost on track for his age now.  But, he was having these spasms for at least six months!!

I never cease to be amazed at the goodness of God.  He holds us in His big, strong, amazing hands and never lets go.  Thank you Jesus for protecting my baby boy.