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