Thurs 5/17/12 - Breck has insurance!

Thurs 5/17/12 - Breck has insurance!

Yea! Good news... no seizures today and received notice in the mail that Breck has insurance until January! Let the testing begin...

I have a call into the person who helped us get this insurance as she has a neurologist that she really likes. And she recommended that we also see an endocrinologist. I look forward to more options and seeing if we can get these seizures controlled.

Prayers are always welcome.
Smiles
Sean A'lee

Wed 5/16/12 - 5:30 am seizure

Wed 5/16/12 - 5:30 am seizure

I was surprised to wake early to Breck having a seizure. I really figured that while on her menstrual cycle we were in the clear. I was wrong... bummer for us. But I know we won't be able to always predict them so I will just continue to document them.

She was on her stomach with her face turned to the left. I heard the swallowing / clicking noise and noticed a lot of saliva. Of course her eyes were open and fixed as well. Her head was also raised up a bit from the pillow and her body was completely stiff. It took at least a minute before she took in a deep breath and relaxed. Once she relaxed she went right back to sleep.

Her alarm went off at 5:45 (yes... only 15 minutes later!) and I noticed as she woke up and looked surprised to see her pillowcase wet. She shook her head and got out of bed. It still surprised me to think that she had no recall or memory of her seizure just 15 minutes prior. Without that wet mark or me witnessing the seizure - she would have no idea she even had one.

It makes me a little sad to think of how long she could have been having seizures in her sleep and we never knew it. But -- again, I know I can't dwell in that place - so I turn my focus on the fact that now we know... and now she IS with someone at night while sleeping --- she has been watched over by more than we know I am sure. Do you believe in angels? I do.

She had a great day at school. Has only one final to study for anymore and so the pressure is not as intense. She had plenty of energy and felt good all day. That is a huge blessing in itself.
Smiles
Sean A'lee

Tues 5/15/12 - No news is good news

Tues 5/15/12 - No news is good news

So --- we are again on a nice seizure free stretch. I am finally beginning to sleep again. Today would be day 5 of no seizures. It also follows her pattern of her menstrual cycle as it started on Sunday May 13... the only odd thing is it had only been 16 days from the previous one.
Because this cycle has been quite heavy she has experienced extreme tiredness. Today at school she actually ended up in the nurses office. The nurse called me concerned that she might be about to have a seizure. She described Breck as extremely pale. Her lips white. Breck didn't have a seizure but couldn't keep her eyes open and said that in 5th hour she could hardly even hold her pencil... she was shaky and just so tired. She slept in the nurses office until I arrived and slept all the way home.
I made dinner right away and since then she has been able to work on homework, but still says she could just go to bed.
Oh... I also asked the nurse to take her blood pressure - It was 100 over 50. The school nurse told me that was fine for someone who is laying down. I was glad she checked - just in case.
Aside from this - we have nothing new to report. :)
smiles
Sean A'lee

Sat 5/12/12 - Happy Mothers Day

Quiet couple of days
Sure appreciate these small reprieves from Seizures. Thurs and Friday night were seizure free. Maybe Sleeping all day Thursday helped. I sure hope so. She is doing fine today - but feeling the pressure of the last couple weeks of school... study, study, study.
She worked at the ranch this morning for a couple of hours and then spent the rest of the day studying for her government class. It is her hardest class and we ALL can't wait for it to be over.
Now we are off to a wedding reception and looking forward to a restful Mother's day weekend. I can honestly say I feel like such a privileged mom to have such a daughter as Breck. She is such an example to me... if only I could be more like her. :)
President Packer's statement is so true... from this last April General Conference:
"One of the great discoveries of parenthood is that we learn far more about what really matters from our children than we ever did from our parents."
Happy Mother's day to all
Smiles
Sean A'lee

Thurs 5/10/12 - Breck's Post

Thurs 5/10/12 - Breck's Post

Hey everyone, this is Breck again. Oh I would just like to include how I've felt these past few days. I really don't know what to say except that I cannot wait to graduate. I can't wait to see doctors. I can't wait to figure these seizures out, and can't wait to hopefully someday be able to drive.

Hopefully I'll only be 19 by then and not any older than 21, getting a driver's license...
I of course didn't see these two seizures I had last night in my sleep; I wouldn't even know I had them if it weren't for sleeping with my mom. She's the only one who tells me how many I have the night before.

I also don't really remember some things about the seizures I have in class. Like the one I had yesterday in my first hour. I do remember feeling the seizure coming and wondering if it actually was a seizure, deciding to just stay there in class...but then just seeing my teacher out of nowhere in front of me and noticing my spot of drool on my leg. I still don't know how many people may have seen it. I just stayed there in class until he finished the lesson for the day and wiped the drool I felt all over my chin...oh so embarrassing.

My teacher followed me outside, just before I would be on my way to the nurse's office. I do remember him talking to me right there...but now I don't even remember what he said. I also remember calling my mom on my way to the nurse's office, but now I don't even remember what I was saying to her on the phone. I was making sense for once...but I still am not even able to remember what I was saying. I just remember wondering at the time in my head if I was making sense; she says I was, and I even remember understanding at the time what my teacher and her and the nurse said...but now I can't remember what any of them said.

My memories of these experiences change. Oh it's just so crazy how many seizures I have.
I just...I want to thank you all as well for the comments and for all your prayers. I do know I wouldn't be able to get through these experiences without the strength which comes from these prayers and God's love. I pray you all have the blessings which would come with praying for me. I thank you all again. I just need to graduate...and then hopefully I’ll figure these seizures out. I do know they don't come without a great reason from my Father in Heaven.

Thurs 5/10/12 - 5 am seizure

Thurs 5/10/12 - 5 am seizure

2nd Seizure in her sleep. Woke again to the clicking noise and lots of saliva at 5am. Very typical seizure lasting only a minute. But she is really tired.

Needless to say --- I am making a "mom's" decision and she will be staying home today from school. Even that is a hard decision as I don't feel comfortable leaving her home alone. And unfortunately we have a group of 36 ASU Junior High kids at the ranch. With 3 kayak trips and 3 horseback riding trips that we have to transport - I am not able to stay home. So we call in the family forces and Izaak will be here with Breck today.

I do feel fortunate that we live onsite so that I can run home if needed. Hopefully she will get some good sleep and we can get her body to calm down.

Monday will be my next day off and we will continue the Insurance process --- goal is to get her to a doctor.

And with all that - I read a great quote someone posted on facebook ..

"If you want a rainbow you gotta put up with the rain" - Dolly Parton

So true --- I know growth and learning comes thru the hardest of times - And I know we are not alone. I am thankful for the love I feel from my Savior and my family. We are blessed in so many ways. Focusing my thoughts in this direction helps me to move forward and know that it will be alright and that someday --- the Bevell family will be REALLY SMART! lol

Smiles
Sean A'lee

Thurs 5/10/12 - 1:30am seizure

Thurs 5/10/12 - 1:30am seizure

I called for John to help with this one. I woke up to Breck gagging --- she was on her back and I could see her choking on her tongue. (I have not seen this before) Eyes open, body stiff, right arm above her head and laying on her back. I got her rolled over as John came into help. He whispered in her ear and stroked her head. Luckily she took a deep breath. Once she came to, she sat up and coughed and then rolled onto her stomach to go back to sleep.

I was relieved it ended easily. I was concerned this one would progress into more. We are always prepared to administer a blessing and her emergency meds if needed.

Smiles
Sean A'lee

Wed 5/9/12 - 9:15 am seizure

Wed 5/9/12 - 9:15 am seizure

Breck called me shortly after dropping her off at school. She had a seizure in her first hour class. She only remembers feeling "strange" and wondering if she would have time to leave the room. Instead she stayed in her chair. Next thing she realizes the teacher is in front of her and her pant leg has a big spot of drool. She then headed to the nurse.

When she called we talked about me picking her up but decided this might be a good day to see if she could make it thru school. She kept me updated throughout the day so I could continue at work.

Then in sixth hour she felt "strange" but after talking to her we don't believe she had an actual seizure --- but they were watching a video in the dark and she left the room as soon as she felt weird. Once outside in the light she felt better.

This evening she was able to work on homework and even head with me to my mothers to wish her a "happy birthday" and have a piece of cake. She also needed to finish the video that they watched in class and it wouldn't work on our internet here at the ranch. So she is caught up for her 6th hour class for tomorrow. Yeah!

That is all for tonight... It is late and I am super tired. Love and smiles to all
Sean A'lee

Wed 5/9/12 - 6am seizure

Wed 5/9/12 - 6am seizure

I woke up several times thru the night with a feeling to check Breck. Each time she was fine. Once her alarm went off at 5:45am I thought we were home free. Then I woke up at 6am with her right arm stiff - bent at the elbow and holding her phone. Again - her eyes were locked and eyelids fluttering, lots of saliva. I rolled her over to her side and talked to her. Telling her "it is ok... just breathe"... Seconds can seem like a really long time, but in reality it lasted for less than a minute and she took a deep breath and laid back.

After about 5 minutes she got out of bed... still a little unsteady -- but was determined to get ready for school. By the time we left for school... she was fully coherent and said she felt fine....

What a trooper.
Smiles
Sean A'lee

Tues 5/8/12 - 1:30 am Seizure

Tues 5/8/12 - 1:30 am Seizure

Hopefully we are winding down again. Breck had a seizure at 1:30 am this morning but felt good enough to go to school. She had a great day -- even got an 87% on a very hard government test. And no seizures throughout the day. Yeah!

We also met with the counselor and a few of her teachers to set up what is called a 504. This is similar to what they call an IEP for kids who need extra help with classes. This one sets options, or allowances for her medical condition. The other great thing about this 504 is that it will carry over to college. That is why we are writing it up even tho there are only 2 weeks left of school. In fact the teachers have been so willing and cooperative.

Some of their suggestions of things Breck needed was:
extra time to complete assignments
Contact info for the professor during off hours - to discuss things she may have missed or even just to ask questions about the work.
Online schedule or calendar of work in case she misses a class.
They all said they are amazed at how well she applies herself and that she is always proactive at getting her missed work and completing it. She often will email her teachers when she isn't feeling well or has missed a day.

I love this about her. She showed this in her work today too. She had missed school Friday and Monday (yesterday) so in English she asked the teacher what she missed. The teacher said they had just been watching a movie and that the written assignment was for extra credit only. Well Breck has an A in the class and doesn't need any extra credit, so she asked if she could go to the Library to work on her other work.

Then in 5th hour - she was free so she went to make up a test and finished early - so again she went to the library to work on her homework.
Her efforts show and the teachers know that she doesn't use her seizures to not complete work... but that sometimes she does need a little extra time to finish them if she hasn't felt good.

So proud of my girl! What an example she is to me.
Love and Smiles
Sean A'lee

Mon 5/7/12 - 1:15pm Seizure

Mon 5/7/12 - 1:15pm Seizure

I am so glad I am at home today. Breck went to lay down about 12pm to nap. And again - I was in the office - working on her insurance "todo" list - when I heard her coughing... I went to check on her and she was sleeping. I nudged her to make sure she was ok and sure enough - another large wet spot on her pillow (about the size of a large orange this time).

I asked her if she was ok... she was groggy and just shook her head and said "I don't know". I asked if she knew where she was? She just shook her head - which tells me that she doesn't understand what I am saying.

She then rolled over and went back to sleep.

I really need a good baby monitor. I can't wait till we get her to a doctor again. There has got to be options for when she is sleeping.

Well I have to get back to figuring out her insurance. Those details will have to be for another time.
We are fine --- she is resting again.
Smiles
Sean A'lee

Mon 5/7/12 - 1am Seizure

Mon 5/7/12 - 1am Seizure

So --- I didn't actually see this one. I was in the office working on Breck's graduation announcements. She had actually gone to bed around 10pm after coming home from a Sunday Institute Fireside. And we didn't notice any seizures during the day on Sunday.

But -- when I checked on her about 1:30 am - her pillowcase was drenched. about the size of a medium watermelon... so we knew she had a seizure. I didn't wake her -- and I didn't wake to anymore in the night.

She stayed home from school as she felt very sluggish and tired.
We are on another stretch ---
Smiles
Sean A'lee

Sun 5/6/12 - 3am Seizure

Sun 5/6/12 - 3am Seizure

Posted May 6, 2012 11:14pm

Breck had gone 7 days without any seizures and so I was not surprised to wake up to a seizure early this morning. It was a very typical one --- She was on her stomach with her head turned to the right. Her eyes were open and fixed. Lips smacking and lots of saliva. It was very short and then she went right back to sleep.

After she was awake and ready for church, I asked her if she remembered having a seizure. She said no --- not at all --- but she believed me because she said she felt strange all morning.

The only other side effects that we could see today is that she was super tired. But -- we didn't see anymore visible signs of seizures. Luckily she was able to take a nap and seemed fine late this afternoon.

We are hoping for a good nights sleep tonight. All in all - we are doing fine.

smiles
Sean A'lee

Sun 5/6/12 - Learned something new - Types of Seizures

Sun 5/6/12 - Learned something new

After a long day at work and shopping yesterday with my mom I came home to a quiet house and welcomed some study / research time. I found some great information:

Partial Seizures

Partial seizures are further divided into simple partial seizures with no alteration of consciousness or memory, or complex partial seizures with alteration of consciousness or memory.

Simple partial seizures can be motor seizures with twitching, abnormal sensations, abnormal visions, sounds or smells, and distortions of perception. Seizure activity can spread to the autonomic nervous system, resulting in flushing, tingling, or nausea. All such simple partial seizures will be in clear consciousness and with full recall on the part of the patient. (I don't recall Breck having any memory with her seizures... or we just have been completely unaware. I would think these would be very hard to pinpoint or even recognize as a seizure.)

If the patient becomes confused or cannot remember what is happening during the seizure, then the seizure is classified as a complex partial seizure. (Breck doesn't remember what is happening... so we can say that most of hers are Complex Partial Seizures)

Complex Partial Seizures

...Complex partial seizures may have an aura, which is a warning for the seizure, typically a familiar feeling (deja vu), nau-sea, heat or tingling, or distortion of sensory perceptions.

About half of the patients do not have any remembered aura. (Breck does have this warning or aura... to which I am very grateful) During the complex partial seizure patients may fumble or perform automatic fragments of activity such as lip smacking, picking at their clothes, walking around aimlessly, or saying nonsense phrases over and over again. These purposeless activities are called automatisms. About 75% of people with complex partial seizures have automatisms. Those who do not simply stop, stare and blank out for a few seconds to minutes.

(Learned something new!... What we were calling a "Grand Mal" are now call Generalized tonic-clonic seizures. But there are 2 classifications of these tonic-clonic seizures... These seizures start with sudden loss of consciousness and tonic activity (stiffening) followed by clonic activity (rhythmic jerking) of the limbs. The other is called Secondary tonic - clonic seizures... which starts after or during a Partial complex seizure. (This is what Breck has --- they start as the partial and then progress into a Secondary tonic-clonic seizure.)

Secondarily Generalized Seizures

Seizures that begin focally can spread to the entire brain, in which case a tonic-clonic seizure ensues. It is important, however, to distinguish those that are true grand mal, generalized from the start, from those that start focally and secondarily generalize. Secondarily generalized seizures arise from a part of the brain that is focally abnormal. Drugs used to treat primarily and secondarily generalized tonic-clonic seizures are different.

(Good news???)

Patients with secondarily generalized tonic-clonic seizures may be candidates for curative epilepsy surgery...; whereas, primarily generalized tonic-clonic seizures are not surgical candidates, because there is no seizure origin site (focus) to remove. Seizure surgery is discussed below.

Other types (not witnessed in Breck)

Atonic Seizures (drop attacks - such as suddenly falling down)

Myoclonic Seizures (brief un-sustained jerk - not repeating--)

Tonic Seizures (stiffing of arms and legs --- but no jerking)

Mixed Seizure Types (BRECKY!!)

Patients can have more than one seizure type. One seizure type may progress into another as the electrical activity spreads throughout the brain. A typical progression is from a simple partial seizure, to a complex partial seizure (when the patient becomes confused), to a secondarily generalized tonic-clonic seizure (when the electrical activity has spread throughout the entire brain). The brain has control mechanisms to keep seizures localized. Anti-epileptic medications enhance the ability of the brain to limit spread of a seizure.

(This may account for why while on Keppra Breck still felt the aura and tremors but it didn't seem to progress into a more severe seizure.. but she was still having the partial loss of consciousness. For example - she could take notes / copy things from a white board and have no memory of ever writing, seeing or hearing the teacher talk about what was being written.) School was really hard during her Junior Year. Breck thought she was just going crazy or making things up... or even that she was causing these feelings.

Well that is enough learning for one day... I am so glad I have found this resource which explains things in a way that I can understand. I feel like I am on a great learning curve.

Information is taken from a free download on my.epilepsy.com

OVERVIEW OF EPILEPSY

Robert Fisher, M.D., Ph.D.,

Maslah Saul MD Professor,

Stanford Neurology

Comprehensive Epilepsy Center, Room A343

300 Pasteur Drive, Stanford, CA 94305-5235

copyright 1997, 2006, 2010

I hope that these posts not only help Breck and our family, but maybe others who are having to also figure things out.

With all of this - again I want to say that our days are more happy than not. When it is bad - we feel the fear, pain and frustration... but when she is doing good -- she lives life just as full as anyone else. We as her parents are committed to this --- And she is very well balanced.

We spend a lot of time talking about how the lessons she is learning today will only help her later in life. It took me years to learn (and I am still learning) my limits on sleep, over extending myself, letting things go, not stressing over what I can't control, and healthy eating (still working on this!!!)... She will be an incredible wife and mother someday!

... ok... seeing that it is 1am, and I worked 10 hours, pushed myself to go shopping and ate at PF changs... maybe I am still learning all the lessons my daughter is having to figure out... lol!!)

smiles

Sean A'lee

Fri 5/4/12 --- Breck's Senior Concert - 6 days Seizure Free

Fri 5/4/12 --- 6 days Seizure Free

Not much to update tonight... other than Breck is doing good and this is day 6 of no seizures... Nice!

And - she did well even with the stress of a Choir concert where she conducted a song that she had rearranged and taught the choir with the help of her Teacher Mr J. He had actually surprised her by working on it in his "spare" time. This song has meant so much to her.  It is by April Mesvery and is called Marks of My Path.  I have included the words at the end of the post.    I know she was nervous but she did great!  

Also --- side note - Breck was given a special award by Mr J because of how Breck handles this adversity / epilepsy on a daily basis.  She is a great example to all those around her as she remains positive and continues forward with her goals in the midst of this trial.  It was a very touching evening

We did get home really late after the concert and so she slept in and did homework instead of going to school. I knew she was pushing it on the sleep end. She did ok today tho.

Smiles

Sean A'lee

Marks of My Path - by April Meservy
Mountain Silent Companion - Holder of Life - Whisper to me
Trees call over your windfall - talk to me of the things that I need

I WANNA be 

Strong like the branches 
that taught me to weather the storms and the wind and the heat
Deep like the river 
that carries me forward that taught me to swim and to breathe.
I wanna be soft like leaves

This canyon - old as an ocean - carries the wisdom the years tend to bring
It echos time past of changing- but for some reason its comfort to me







I WANNA be 
Strong like the hillside 
that taught me the brilliance of life and to learn how to be
Deep like the valley 
that showed me the power of getting back down on my knees
How to be soft like leaves

And all that I see speaks of the One who has brought them to me
All of these places are marks of my path - His footprints speaking to me




GONNA be: 

Strong like the branches
that taught me to weather the storms and the wind and the heat
Deep like the river 
that carries me forward that taught me to swim and to breathe
Strong like the hillside
that taught me the brilliance of life and to learn how to be
Deep like the valley 
that showed me the power of getting back down on my knees
Teach me to be --- soft like leaves.

Wed 5/2/12 - Regions of the Brain - www.my.epilepsy.com

Wed 5/2/12 - Regions of the Brain - www.my.epilepsy.com

Happy to report 4 days seizure free. It is amazing to me to think that just last week we were dealing with so many. It seems like such a long time ago. I believe it is my brains safety mechanism to just move forward.

I have found my favorite site for information on Epilepsy. I can't believe how many times I have gone "google"ing... only to be frustrated with what I find. Most of it is negative or so "medical" in terminology that my brain spends most of the time trying to figure out what it is really saying.

http://www.epilepsy.com/

This site is very informative with short sections. Here is a photo from the pdf booklet they offered...

It shows the regions of the brain and correlates where the seizures occur and what behaviors are effected. Most of Breck's "side - effects" or "seizures" are directly related "memory, talking, hearing, comprehension and tongue" 

Here is an excerpt from the article explaining the photo of the "Regions of the Brain" 

OVERVIEW OF EPILEPSY

Robert Fisher, M.D., Ph.D.,

Maslah Saul MD Professor,

Stanford Neurology

Definition of Epilepsy....

...the type of seizure depends upon several factors. One of the most important factors is where in the brain the abnormal electrical discharge occurs. Figure 1 shows the four lobes of the brain (frontal, temporal, parietal and occi-pital) and where key regions of the brain are located. Strength and sensation are laid out along the border of the frontal and parietal lobes, with strength more toward the front (frontal) and skin sensation more toward the back (parietal) of the strip.

Moving laterally and down the brain are control areas for trunk, arm, hand, fingers, face, lips, and tongue, with tongue most laterally and inferiorly on the motor strip. The progression of electrical activity during a seizure can march through this area activating each muscle group in sequence over seconds to minutes. A talking center, called Broca‟s area, is located in the left frontal lobe in front of the motor strip, and a speech comprehension area called Wernicke‟s area in the left temporal-parietal region for most right-handers. Speech centers may be on the right or both sides for left-handers. Visual perception is governed from the posterior poles of the occipital lobes. In general, brain functions are crossed: the left side of the brain rece-ives information from, and gives information to, the right side of the body, and vice versa.

As Breck and I continue learning we will both be more prepared for the next doctor to help them diagnose her. I believe it will help with knowing what questions we need to be asking and what information we need to be providing. It truly is a journey and we have much to learn.

Smiles

Sean A'lee

Tues 5/1/12 - Epilepsy & Hormones

Tues 5/1/12 - Epilepsy & Hormones

Nice to have these little reprieves. Once again Breck has had no seizures last night in her sleep or throughout today at school or at home. She is looking and feeling good.

Her menstrual cycle seems to have stopped having lasted barely 4 days. Very short and light. Not sure how this will play out next month... hmmm..

I found the following article from this website interesting:

http://www.webmd.com/epilepsy/guide/your-changing-hormones

And I will preface this with the fact that one test we ran twice in 3 months is a saliva test for hormones and Breck's hormones were all over the place - and actually she was ovulating more than once and on both tests had dropped 2 eggs... Of course she was happy thinking she could have twins some day. lol enjoy...

Smiles

Sean A'lee

Epilepsy and Your Changing Hormones

Women with epilepsy face different issues than do men with epilepsy. For some women, the pattern of epileptic seizures is directly affected by the normal hormonal cycles they experience throughout their lives.

Two primary sex hormones flow through women's bodies. One is estrogen and the other is progesterone. Most of the time, your body has about the same amount of each.

What does that have to do with epilepsy? Doctors have learned that both of these hormones interact with brain cells. Estrogen is an "excitatory" hormone, which means that it makes brain cells give off more of an electrical discharge. Progesterone, on the other hand, is an "inhibitory" hormone, which means that it calms those cells down.

When the body is making more estrogen than progesterone, it can make the nervous system "excitable." In other words, you could be at greater risk for seizures. The hormones aren't actually causing the seizures, but they can influence when they happen.

Some women with epilepsy have more seizures at times when their hormones are changing. For example, some young women have their first seizures at puberty. Other women have more seizures around the time of their menstrual periods. This doesn't happen to all women, so doctors are still learning about how hormones and epilepsy interact.

Epilepsy and Your Menstrual Period

Some women have a form of epilepsy called catamenial epilepsy. This refers to seizures that are affected by a woman's menstrual cycle. Doctors aren't completely sure how many women with epilepsy have this, but they think it's about 10% to 12%.

The exact cause of these seizures is unknown. However, some women have most of their seizures when there is a lot of estrogen in their body, such as during ovulation. Other women have seizures when progesterone levels tend to drop, such as right before or during their period.

If you have seizures that start around the last half of your menstrual cycle and continue through the whole second half of your cycle, then you might have another type of catamenial epilepsy. This is when a woman has menstrual cycles that do not release an egg. These are called "anovulatory" cycles.

Women with epilepsy have more anovulatory cycles than other women do. Some doctors think that as many as 40% of menstrual cycles in women with epilepsy do not release an egg. It depends on the woman, and it is not always the same every month. Some months a woman will release an egg, and some months she will not. In general, though, women with epilepsy do not ovulate as regularly as women without epilepsy.

Why is that? Doctors do not know for certain. But, some seizures start in the temporal lobes of the brain. This is an area that is very closely connected to the areas regulating hormones. Women who have seizures that start in the temporal lobes may have their hormone production affected by their seizures.

If you can identify the role hormones play in your seizure patterns, it can help with your treatment. Try keeping a calendar of your menstrual cycle, and the days that you have seizures. Include notes about other factors that might be important, such as missed medication, sleep loss, stress, or illness. By sharing these records with your doctor, you can work together to manage your epilepsy more effectively.

Mon 4/30/12 - Seizure Free night

Mon 4/30/12 - Seizure Free night

yes... 2nd night of no seizures. And so far - none at school. Breck woke up feeling great and lookin' good this morning. :)

We are also in the process of trying to establish some insurance for her. What a chore. We are now working with an attorney to help with this daunting task.

It is a challenge as she is 18 yet still living at home. And I have heard that epilepsy is a "questionable" disability with the state. I will be posting in more detail about what we have experienced so maybe we can help others avoid or know which direction to turn for help.

For now --- just know it is our goal to get her insured, see a new neurologist, endocrinologist and possibly even get her under care from the Mayo clinic.

Her focus after graduating is to get these seizure controlled, work at the ranch and focus on getting her driver's license (and she has to be 6 months seizure free I believe).

Here's to a productive summer... lol

smiles

Sean A'lee

Sun 4/29/12 - No Seizure during sleep

Sun 4/29/12 - No Seizure during sleep

Whew... I will take it! I am so glad to have a good thing to write this morning. The last few days have been a little rough but last night we had no seizures during Breck's sleep. I did wake up a couple of times and checked on her -- she was sleeping great.

Now let's have a good day too.

Smiles

Sean A'lee

Sat 4/28/12 - 5:30pm seizure

Sat 4/28/12 - 5:30pm seizure

I received a text from Breck stating that she had a seizure while at her friends house. She remembers nothing other than looking down and seeing her shirt wet with saliva. She was at a friends birthday party and said everyone was really nice about it.

I was so glad that her good friend Michael was there as he has seen quite a few of these. He never "freaks" out and actually used to carry her emergency medicine on him all the time. (Until it was so smashed from being in his wallet... lol)

Well on the way home she asked him about what happened and who noticed. He said a girl said "Hey, is Breck ok?!" He looked over and said "Oh --- just a seizure" very calmly. They said it lasted under way under a minute and that she came fully out of it really fast.

Now --- Breck was very prepared when she went to this party as she had her emergency meds and made sure Michael knew where it was before arriving. Again I am so grateful that she has such good friends. Michael is just one example of that. He even keeps me posted if he thinks she sounds weird over a text. Love that boy! I don't think I could let her go places if she didn't have that kind of support system.

Another example is today when her cousin Katie came to work with her at the ranch this morning. We first made sure Breck was feeling ok and that she felt like she could do a few hours. Katie has seen many seizures from my Niece Chelsea and another of Katie's cousins on the Durfee side. So it doesn't seem to scare her too much. She just helps Breck as needed and let's me know what is going on. Luckily today --- Breck did great at work with no incidents.

The only other thing to note is that her menstrual cycle has started. It is rare when a young lady finds relief during this time. lol But Usually she has no seizures during during her actual cycle.

This would be day one... so we will see how tonight and tomorrow go.

Smiles

Sean A'lee

Sat 4/28/12 - 2 am seizure

Sat 4/28/12 - 2 am seizure

Breck was on her back. Her right arm bent at the elbow but lifted up a little --- fingers stretched straight out and stiff. Eyes wide open and foaming mouth with lots of drool. These are the ones that seem to scare me as she was blue at the lips and seemed to be choking. I tried to roll her over, ran and got John and by the time we were back she was coming out of it. She sat up --- again shook her head, rolled onto her stomach and went back to sleep. All in all --- from when I woke up until it was over - less than 2 min. Just don't know when it started.

This is day 4 of this stretch of seizures... we should be just about through for awhile if it follows the same monthly pattern since January 2012. I am hoping that is the case.

Smiles

Sean A'lee

Fri 4/27/12 - 2:00pm and 6:50 seizure

Fri 4/27/12 - 2:00pm and 6:50 seizure

I received a text from my Mother that Breck had a seizure at 2pm. She had woken from her nap and had just eaten some noodle soup and a Popsicle. Then she, my mother and my nephew Jacob had gone outside on the back porch. My sister Erika was in the office working on her online classes as my mother was babysitting Jacob and the new baby Joshua.

Jacob needed some outside time and my mother let Breck hold sweet Joshua while she played with Jacob. As my mother was headed inside for a quick minute Breck said "Grandma you need to get take the baby." My mother said "Are you ok?" Breck - "I feel funny". My mother immediately headed over and just after she took the baby - Breck went into a seizure. My mother first reassured Breck that she was ok and that she was there. There were no convulsions, but her mouth turned up slightly and her head fell slightly back and to the left. My mother quickly got Erika who came and also told Breck that she was ok and that they were there for her. They had taken paper towels out to catch the drool and waited for her to come out of it. Again she had a lot of saliva. They believe it was 2 minutes or less in all. She remained in the chair for a few minutes until she was able to walk inside.

Everyone was calm. Breck then was super tired and slept until about 4:30 pm.

After that they ate dinner and were playing games. Breck went to the bathroom around 6:45. She had another seizure then but was by herself. She remembered finishing and washing her hands standing at the sink. Then when she came out of it she saw the drool on the floor. The good thing was apparently she did not fall, thank heavens. They continued to play games, even dominoes -- working on the mind -- Breck was smart and used her calculator and Grandma worked at the old way in her head - I think it hurt - haha.

Again - I am so extremely grateful for my family who can take such good care of Breck. It was a complete comfort knowing Breck was there and not at home alone. I also know I could at anytime call on any of my Bevell Sisters to help at anytime. Or John's mom. I also have such amazing friends at church that would come to help if needed. I don't know how people cope without such a fantastic support group. And I am thankful that I most of the time I am available to help my daughter. These are the blessings a midst the storms. Thank you everyone for your prayers of peace and strength. They are felt!

Smiles

Sean A'lee

Fri 4/27/12 - 8:50 am seizure in 1st hour

Fri 4/27/12 - 8:50 am seizure in 1st hour

I had just returned to the ranch after dropping her off at school when I received a phone call from Breck at 9am. I knew she had had a seizure as she couldn't formulate concise sentences. Just getting small words out like mom, don't feel good. I asked if she had a seizure - she responded with yes. I told her to get to the nurse and I would go pick her up.

After we were in the car about 9:30am she told me that right before the bell rang in 1st hour (Government Class) she felt one coming on. She was trying to just relax and let it pass. Then the next thing she remembers is seeing Jesse (a good friend) and her teacher kneeling next to her. She had a bunch of paper towels in her hand and apparently they had been catching the saliva for her. By now she could speak clearly, but was tired and lay back to rest.

Instead of coming back home I took her to my Mother's house for the day. I knew I needed to work and that I didn't want her to be alone. My sister Erika as also there to help if needed.

She immediately went to lay down and slept.

So grateful for family. I don't know what I would do without that support.

Smiles

Sean A'lee

Fri 4/27/12 - 2:15 am seizure

Fri 4/27/12 - 2:15 am seizure

Was so glad I actually woke up. I had woken up suddenly at 2am and randomly checked Breck. She seemed fine. Then within 15 minutes I heard a faint noise .. soft clicking from her mouth. I quickly turned on the light and sure enough she was seizing.

She was on her stomach with her head turned to the right. Her eyes wide open and lots of saliva on her pillow. About the size of a medium watermelon. She was clicking her tongue but other than that I didn't notice any other convulsions. It does seem that she was holding her breath during the seizure as like the times before. I quietly whispered to her that she was ok and reminded her to breath. I even find myself taking in big breaths like I am showing her how. I guess it is a natural thing to try to breath for someone.

After about what seemed 1 - 2 minutes she took a big breath and I knew she was coming out of it. Sure enough she sat up - I gave her a towel and helped her wipe off her pillow. She looked at me, shook her head and laid back down. She couldn't seem to talk but just heaved a heavy sigh and shook her head. Then went to sleep. Again she continued for a short time --- maybe 5 minutes with random clicking of her tongue.

In the morning she wondered why she had a towel next to her and seemed to only remember seeing me kneeling next to her for a short moment.

I then confirmed to her that yes she had a seizure and what had happened. She said "wow, because I feel so good, like I slept really good all night." She also looked really good - her coloring and energy level.

She then made the comment that it will be interesting someday when she gets to look back on her life --- it will be like watching a movie she has not ever seen. lol --- so true. Oh how I love her attitude and sense of humor.

Then I took her to school.

Smiles

Sean A'lee

Thurs 04/26/12 - 8:30 pm Seizure

I guess I updated too soon. I will figure this out and maybe group them together in one post a day.

We are all headed to bed after her last seizure at 8:30 pm. Breck was in the kitchen and felt one coming on. She actually made it to the living room and was trying to move something off the couch to sit down. John noticed her mouth was tight on the right side --- and she seemed to be trying to keep her mouth shut as it was full with lots of saliva. I thought she might start convulsing, but did not. Her movements seemed awkward and stiff like robotish...(if that is even a word) or mechanical might be a better way to describe it. He grabbed her and helped her sit forward --- it is amazing -- she didn't open her mouth until we had a towel for her --- Her eyes were open and very dazed --- glass like.

It lasted maybe 2 minutes and her vocabulary was back with in 5 minutes.

We asked her what she remembered - she said - she remembers feeling one come on -- heading to the couch and trying to sit down... then waking up - doesn't remember anyone giving her the towel.

She is definitely tired.

Good night --- smiles

Sean A'lee

P.S. Nope... "robotish" didn't show up in spell check as any type of word... oh well --- I guess I am creating my own language. lol

Thurs 04/26/12 - 2 Seizures while napping - 5pm to 6pm

Breck slept from 5 - 6pm and when she woke up had 2 different large wet spots on her pillow. Sign of 2 more seizures. She also expressed being really tired and had a hard time finding the right words when telling me about it.

I am so thankful she called me and Izaak was then watching her more closely for me. If our count is correct this makes 5 seizures within 36 hours.

Tonight our plans are dinner and lounging on the couch.

She didn't complete all the homework she wanted. She said it was hard to focus and understand what she was reading. She was working on her government class. She needed to read about a subject, write a paper explaining the situation and then give her opinion on it. I believe she chose one concerning prayer in schools.

Let's pray for a good night tonight.

Smiles

Sean A'lee

Thurs 04/26/12 - Seizure while sleeping

I don't have an exact time of her seizure last night. I was afraid of that when I went to bed. I even told my mom last night that I was so tired that I was worried I would sleep through any that she would have. We both figured if it was a real bad one that I would wake up.

I did wake up around 2 am and checked on her. But at 5:45 this morning when her alarm went off for school she was too tired and seemed very out of it. I asked if she had a seizure and she kind of said "I think so... I don't know" she thought so because her pillow was soaking wet. She looked very drained and said she just wanted to sleep, she was so tired.

So she slept until 7:30 when she got up and got ready for school super fast. We dropped off Izaak and then she looked at me and said she really just wanted to go home - she was so sleepy.

I could tell she just didn't feel good and so she is now home resting and working on school work that she can do here.

This many seizures seem to fit in with how things go and we may have a couple more days like this before a reprieve.

Aside from that all is well.

Smiles

Sean A'lee

Wed 04/25/12 - Seizure at 2:30pm

Alright! Hey everyone; this is Breck herself, also able to keep things updated. I'm sure it just might be very easy to tell whether my mother or I are speaking...just cause...it actually makes me laugh, thinking of the two different stories either my mother or I can give when I'm having a seizure.

They can be like the one this last Sunday...where I don't remember a thing except all the sudden I'm on the floor with people above me, or I feel the seizures coming and all the sudden look down and see a line of drool all over my shirt or a puddle on my desk or the floor. Those can be so embarrassing at times, and yet...they can also be the type I'm most grateful for, able to know what really happened. At other times, sometimes with other seizures, I'm able to still at least smile at the ridiculous memory.

Real fast, I'll include how I did have another seizure today in my sixth hour, but we had a substitute in class so I wasn't even about to try and explain...so hoping I could get out in time I just went up to her right away as I felt it coming and asked if I could go to the restroom. She was really nice and said yes right away. As soon as I was out the door my legs felt crumbly and I sat down right there outside against the wall. And then...next thing I know, seems to me to be a second later although I know it wasn't...I looked down and my shirt and pants were covered in their waterfalls of drool...ha, I know it is really gross, but at the same time, no one else was there...no one else was even walking around me for even me to tell if I'd just missed them taking some steps or something; I am so grateful, for this confirmation that I had even had a seizure, instead of me being paranoid.

I've heard so many different stories, of what happens during these seizures, but one of my favorites, as I was about to tell before talking of my seizure in sixth hour, is the time I felt one coming and told my mom, since I was here at home and we were actually making some food, bean and cheese burritos. She sent me to the couch and as soon as she could, she brought me a burrito. It was great, as are all of our burritos, so I then was just trying to ask for another one when my mom and dad just stood there and were laughing at me! I got so frustrated! What was wrong with them?! I finally just went to sleep, turning my back on them.

Waking up a while later, I found out their whole point of the story. To me, my words were all making sense, but they say I just kept saying the same sentence over and over. "Get the secretary out of the tire. Get the secretary out of the tire!" Ha, oh that is only one of the funny stories we have with these seizures. I truly do have a marvelously wonderful family. I know my mom has probably heard me say this over and over again, but I truly do feel my family and my greatest friends who have seen these seizures are the most absolute greatest of people! I do love all of them so so very much, for all that they go through, watching me have these most scary sounding seizures...I've only ever seen a couple which my mom has shown me videos of, but other than that, I never seem to catch anything except the feeling of them coming and then all of the sudden people's faces around me.

I also do know I have such a strong testimony, which is also one of the only things which feels to be getting me through. I could warn all who are reading this now...ha, I will try and keep them shorter from now on but I really might also end everything with an ending of my testimony. I truly do know without a doubt I am not going through these seizures without a reason, and I truly do know without a doubt I have a loving Heavenly Father and Savior, Jesus Christ, who love me, and I love them. I know they will never give me anything which I can't handle, and I thank them for everything they're giving me with these seizures, including all the true friends I'm coming to find and wonderful love I'm able to feel from so many around me. My heart is so full of love. Thank you so much everyone. Love you! And I say these things in the name of Jesus Christ, amen.

Wed 04/25/12 - Seizure at 4am.

We as a family are trying hard to see any patterns to Breck's seizures. My Mother (Thelma) actually bought Breck a pocket calendar to keep in her backpack at school or in her purse to document when she has a seizure or just even when she just feels a little off. This has been the best tool for us. I tried using a calendar on my phone, online or even the family calendar on the wall. But for some reason the little one "to go" is what WE ALL tend to go for.

We are also tracking her menstrual cycle (TOM... code word)to see if that has any effect on what is happening. Since January we have noted that she will have seizures before and after TOM but not so much during. And she also seems to have 10 - to 12 days each month being Seizure free.

We also note the days that she is super tired... to the point of physically not being able to stay awake. This does seem to be right at the onset of TOM.

Well with all these "written patterns" and with how she acted Sunday morning, I did resort to the pocket calendar and sure enough we were on day 11 or 12 of being seizure free. So the seizure on Sunday wasn't as much a shock as was the type of seizure she had. The Grand Mal has been very rare --- but they seem to be increasing the last 60 days. I think she has had 4 now in 60 days and prior to that we hadn't seen one since August of 2010. Most of her seizures are what they call partial complex seizures.

Here is some basic info I pulled from this website:

http://www.webmd.com/epilepsy/guide/types-of-seizures-their-symptoms?page=2

Partial seizures are divided into simple, complex and those that evolve into secondary generalized seizures. The difference between simple and complex seizures is that during simple partial seizures, patients retain awareness; during complex partial seizures, they lose awareness.

Complex partial seizures, by definition, include impairment of awareness. Patients seem to be "out of touch," "out of it," or "staring into space" during these seizures. There may also be some "complex" symptoms called automatisms. Automatisms consist of involuntary but coordinated movements that tend to be purposeless and repetitive. Common automatisms include lip smacking, chewing, fidgeting, and walking.

The third kind of partial seizure is one that begins as a focal seizure and evolves into a generalized convulsive ("grand-mal") seizure. Most patients with partial seizures have simple partial, complex partial, and secondarily generalized seizures. In about two-thirds of patients with partial epilepsy, seizures can be controlled with medications. Partial seizures that cannot be treated with drugs can often be treated surgically.

With that being said we figured we would be in for another round of seizures this upcoming week. Monday --- she was still on the Clonazepam .5 mg from Sunday. No seizures but it took the whole day for her to not be kind of "out of it"... super slow and coloring was kind of greyish. (I know some of you laugh thinking of how I view colors... lol... but JB said it too!) And Tuesday she looked great, lots of energy and had a great day at school. Came home - took some Senior pics - did some homework and headed to bed by 9pm.

Then this morning at 4am I awoke to her gurgling noise and flipped on the light. Sure enough - her eyes were wide open, foaming at the mouth and flat on her back. I ran to get John as he sleeps in the other room so that Breck is never alone at night. By the time he got there she came out of it within a minute. I didn't even have time to roll her on her side.

How do we know?... You can tell by her eyes mostly --- it is weird how someone's eyes can change when they are looking at you instead of thru you. Anyway I tried to get her to talk but could tell that she really couldn't and she just wanted to go back to sleep. She groaned - and rolled over onto her stomach. I listened for another 15 minutes until the clicking noises stopped. Then tapped her and asked if she was ok. She muttered yes and we both went back to sleep.

This morning I asked her how she was feeling - she said fine. She said she remembered seeing Dad & I above her but couldn't understand what we were saying. Matches what we had been thinking.

In the future Breck plans of writing as well, which will be interesting to get what she is feeling and remembering. Maybe after graduation... she is a little busy right now.

Again --- this is very detailed and for those who read it --- thank you.

We are fine... counting our blessings. She is not hurting, she has a great attitude and many wonderful friends and family that love her. And that is the best thing of all.

Love and Smiles

Sean A'lee

Sun 04/22/12 - Grand Mal during church

Grand Mal during church

Well, here we go. I first off want to thank anyone (family or friends) that are taking the time to keep up with Breck's epilepsy. Although I am writing the latest happenings, please know that we are all fine and seem to be keeping a "chin up" as we go along.

Yesterday, Sunday April 22nd, 2012 Breck had a Grand Mal seizure during Sunday School at church (between 2 and 2:30pm). Her Dad and I had a feeling earlier that something was not quite right, but for anyone else it would have just been signs of a young woman who was cranky or even categorized as "PMS". So neither John or I said anything to each other, just mentally decided we would keep an eye out. Apparently we were correct, but not precise!

Here is what happened as best I can piece together from her teacher Brother Brock Pettyjohn and myself interacting with her.

Brock said there was no warning signals that he could see. Breck had been participating in class and had just read a scripture and even raised her hand to answer a question. He had allowed another student to answer and before they finished he noticed Ariel holding Breck. Her neck was stretched back and her body stiff and convulsing. Ariel confirmed that she was having a seizure. They then carefully put Breck on the floor where the students helped to hold and keep her heels and elbow from hitting the floor. McKayla left immediately to get me from class where I gathered my purse that had her emergency meds. It was amazing to watch as Brother Rich Moores noticed my expression and immediately got up from class to come help. He also got Brother Chris Wood's attention and they both followed me out of the room. I expressed my desire for them to give her a blessing as John was at home that day. As I entered the stage (where the class was) I saw Breck laying on the floor flat on her back. She had stopped convulsing but was still seizing. She was foaming at the mouth with gurgling sounds as she had a lot of saliva draining. I also noticed blood oozing out of her mouth. My first thought was "Oh no... that is new... where is that coming from and what is causing it". I appreciated Brother Wood's reassuring words "She probably bit her tongue Sean A'lee". He is very experienced with seizures as he has a brother who has epilepsy too. Sure enough I caught a glimps of her tongue and could see a bad bruise where she had bit down on the tip of her tongue. Brother Wood immediately held her head and I got close to her ear to whisper that everything was going to be ok and that I was there. She seemed to "relax" but was not coming out of the seizure. I then quickly retrieved her meds and slipped the Clonazepam .5 mg inside her bottom lip. I was unable to open her mouth as it was clamped tight so I couldn't get it under her tongue. But the good news is that this way she didn't bite me. After that Brother Wood and Brother Moores administered a Priesthood Blessing. We then asked someone to bring some paper towels to clean her off and waited for her to come out of the seizure. It seemed to take forever. I came very close to taking her to the hospital as she kept making repeated jerky motions trying to sit up or pull her dress down. Chris and I kept reassuring her that she was covered and the she just needed to lay still. She didn't seem to understand and her eyes still had a glossy look. Brother Pettyjohn then took the class members to another room so that when she did wake up there wouldn't be so many people around her. She continued to seem to go between being asleep and awake. Each time she opened her eyes we would reassure her that she was ok and then ask her if she knew where she was or who I was. Bishop Randy Pickrel then entered the room at some point and we discussed whether I should take her home, to the hospital or to one of their homes to let her sleep it off. It was a hard decision and I just wished she would give some sign of coming out of it. After about 20 minutes (I think... timing is hard to put together), she actually opened her eyes and could barely say my name. She still couldn't say where she was but I knew there was improvement. She then sat up and tried putting on her shoes. We knew she could barely walk and so I told her "no shoes" and took them from her. She then took some of the paper towel and tried to put that on her foot like a shoe. I then knew she wasn't quite out of the seizure. She laid back down for a few more minutes until she opened her eyes again, this time with tears - I asked her if she knew where she was, she said "the church?". I said yes and asked her if she was embarrassed. She nodded yes as she cried. Whew... I knew she was with me again. So we helped her to the van and Chris drove us home. Rich later brought Izaak home and took Chris back to the church. By the time we arrived home about 3:30 I would guess, Breck could walk pretty well, was fully aware and making sense. She expressed pressure and slight headache on the top right side of her skull. She was however very sleepy and went straight to bed where she slept until 6:30. When she awoke she still noticed the pressure in her head. She was up for just a couple of hours, ate and then went back to bed and slept until 9am or so with no other seizures that I am aware of.

Today Monday April 23rd she seemed just super slow and groggy for most of the day. She took a nap around 1pm and about 5:30 seemed to have better color and be back to her normal self.

As we visited today about what happened I was again so proud of her attitude. Yes, she is very embarrassed to know this happened in front of her peers, but more than that she felt complete gratitude for the help and protection they gave her. She wants to thank them and let them know that even tho she may have looked like she was in great pain that in reality she remembers nothing past raising her hand until she woke up with Brother Wood and myself around her. She said she knows there were a couple of other people but the memory is still hazy. We both know that all trials can be a blessing and way of helping others. Maybe thru this everyone can gain a little experience and be more prepared in the future. We never know when we might need to help someone else.

Again, thanks for reading. Please know we are fine. We feel loved and protected. We know answers will come as we are ready and that all things can be for our good.

Smiles and faith

Sean A'lee