Development

So, in my last post I mentioned that exciting things are happening in regards to Levi's development.  Over Christmas break he started doing and saying things he has never done or said before! He started mimicking words regularly (something he did very infrequently before).  He started making animal sounds at the appropriate animals without being prompted to do so (he would rarely do it when he was prompted and only for a couple of animals).  Now he knows several animal sounds!  He started pretending to eat toy food and talk on phones.  This is a huge step as he had never pretended before.  He has also starting bringing us toys and books to play and read with him.  Again, this is something he's never really done.  These things might seem simple to most people, but they are things he should have been doing six to twelve months ago.  So, to see growth like this so quickly is very encouraging!  We are quite encouraged by this development and are hoping to see him continue at this rate.

The main thing to keep praying for is that he is still inconsistent in all of this.  This could be caused by his yucky seizure meds, but the developmental specialist said it could also be a sign of autism.  She said he is not on the autism spectrum at this point, but that if he continues to be inconsistent in his attention and his performance that we may have to reevaluate.  Before we do that, though, she wants to try to get him off of his current seizure medication and onto something that doesn't cause developmental problems like this one does.  The ONLY reason he's on it, at this point, is because his seizures were doing more damage than the medicine could do and the regular seizure meds weren't stopping the seizures.  But, since they've been stopped for awhile, we'll be talking with Dr. Q about when we can make some changes.  He's the ultimate deciding factor for that. But, once we do change his meds we'll be able to tell what is causing his inconsistency.  Please pray that it's the medication and that we can switch to something new soon!!

We have another appointment with Dr Q as well as another EEG in a couple of weeks so I'll have more to share soon.

Catching UP

WOW!! It's been two months since my last blog post!  I've got some serious catching up to do.  So, I'm going to cut to the chase.


November, as you may have noticed by the hideous redecoration of my blog site, was National Epilepsy Awareness Month.  I successfully posted about epilepsy two or three times and then got sucked in to the craziness of the holidays.  Making homemade stockings and hand warmers for my entire family ended up taking my every spare moment.

I also spent A LOT of time in the doctor's office waiting room - twice a week for four out of six weeks (all of Nov and the first two weeks of Dec), and once a week the other two of those six weeks.  It was a little crazy.  But, things are slowing down now so I've been able to have some chill time over the past week or so.

On to the Levi front.   Of course a goodly portion of waiting room time was for him, but I'm happy to say that his appointments are going to be spreading out a bit.  Hooray!  I will, though, share the results with you because that's what I do here :)

The big appointment that we had with Levi was toward the end of November.  We met with a developmental pediatrician who, you guessed it, assessed his development.  She asked me a million and two questions and observed him while he played and played with him and talked to him, etc.... etc.... etc....  In the end, she said what I already knew.  At 23 months old he was assessed at a fourteen to sixteen month level for play and physical coordination, but at a twelve to thirteen month level for language.  Like I said, this wasn't a huge surprise to me considering my previous post about Jack.  It was disappointing, though, to hear it as an official assessment.

Do you remember that one time in one of my previous posts that I cracked that one funny joke about how if Levi is six months behind now then when he's thirty people aren't going to get on to him for acting like he's twenty-nine and a half so I have nothing to worry about?  Well....., apparently that's not quite how it works.  Instead of months behind, it's percentage behind.  So, according to the doctor, he's behind by about thirty percent.  So, if he's behind by thirty percent at the age of thirty,.... well..... you can do the math.  So, that was disappointing as well.  But, she did say that children who start out on track, like Levi did, and then have some kind of event or medical situation that causes the developmental delay, like Levi did, have a better chance of gaining ground back.  She just didn't want to get my hopes up, because it is also likely for someone in his situation to remain delayed.

So, I was rather disappointed and have really struggled with it, especially for the first few weeks.   It's not easy to realize that your vision for your life, and your child's life, might not be even close to what you expected and dreamed.  So, I've had to let go of some dreams and ideals that I never thought I'd have to let go of.  It's been hard, but, amazingly, it's been liberating.  I'm reminded, again, of God's sovereignty.  I'm not in control of anything and the reality is that no matter how well life goes, things aren't going to go quite how I expect them to.  And, the more I can let go of my dreams and just let God have His way, the more I'll be able to handle it and even embrace it and be content and happy when things don't go my way.  I'm not saying I'm giving up hope for a complete recovery.  On the contrary, I know Levi will have a complete recovery.  I just don't know exactly what that will look like.  And I'm becoming more and more okay with that every day.


Now, since Levi had that last appointment there have been some pretty exciting developments in his development (ha.  developments in his development. I'm funny.) But, that's for another post.  This one's getting too long.

To Be Continued..........

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!