Mon 11/24/13 - Things in Common

Mon 11/24/13 - Things in Common

Last week I stumbled across a blog about Annie.  A young girl who went in for the same surgery that Breck is scheduled to have Dec 16, 2013.  I was amazed at how much Breck and Annie had in common with the onset of their epilepsy.  Annie is younger than Breck and had her surgery 1 year ago.  Today she is seizure free.  She still has some hurdles to overcome and work on - but overall is doing well.

You can read about Annie's surgery here at:  http://sevenredheads.blogspot.com/2012/11/amygdalohippocampectomy.html

I was able to speak to Annie's mom Tiffany last night on the phone.  What a blessing to hear of someone else's experience and gather advice on what to expect during surgery and recovery.  Now Annie ended up having more of the brain removed than expected.  She had some of her temporal lobe removed along with the hippocampus and amygdala.  Therefore her issues from recovery could be different and harder than Breck will go thru.  That being said -  Here are some things I learned from Tiffany:

1.  Video Breck reading out loud, telling a story,  joke and even doing some sign language.  This may prove very useful in her recovery - to know where she was at before surgery.  Tiffany wished she had done this with Annie.  Annie has had therapy weekly to help regain some of these skills.

2.  This is Survivable.  With all that Tiffany said - the last thing she told me was that even tho it is hard - we can get thru it. Tiffany really stressed taking care of myself as well as Breck.  Sometimes us Mom's get wrapped up and when it is over - we don't know what to do with ourselves.  Too used to worry.  She said to not rule out counseling if needed.

3.  Personality remained the same.  This was a relief to me.  Tiffany said if anything Annie is a happier child.  She didn't experience a negative change.

4.  Some of the trials after surgery were -
Not being able to speak for a few days.  Annie tried to use sign language to communicate.

Not being able to handle more than 1 visitor at a time.  Her brain was too overloaded.  Annie loved getting cards and notes in the mail.  This is how people were able to stay connected to her while she couldn't handle visitors. 

Listening to people speaking sounded like the school teacher from Charlie Brown (Whaa Waa Wahh Wa)

Double vision that lasted at least two months.

Not able to handle loud noise or music.  Even the church organ was a problem.  Annie needed to leave the room during the hymns.  Annie often took earplugs to school to use if the noise was just too much.

School work was impossible.  Tiffany suggested that we talk with Breck's college about her scholarship to see if we can put it on hold if needed.  Annie is just now able to stay up with school work.

Short-term memory is a real issue and slow to return.  Annie is learning new skills to compensate for that.  In the early months after surgery, Annie would read a line out of a book and not remember what she read after reading the next line.  I am hoping that Breck's WADA test results are correct and that won't be an issue for her.

What is interesting are the thoughts that had come to my mind even before finding out about Annie:

John and I had discussed keeping a close eye on what tv / movies we watch and playing soothing / soft music.  With the brain healing we want to be careful about what is focused on.

We also discussed how important it will be to have a calm / peaceful atmosphere in our home.  Not so much coming and going.

Staying positive is very important.  Breck and I already had discussed creating a place in our home to post "gratitude" notes up on the wall to help on something good in every day.

Even with all this we understand that Breck's experience could be very different - especially if the hippocampus and amygdala are the only parts removed.  How very grateful I am to hear and read of Annie's experience.  I hope we will be able to meet this amazing young girl and mother before Breck's surgery.  I feel like we can be more prepared and ready for whatever happens.

Blessing through others.  I look forward to when we will be on the giving side and be able to help others.

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

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.