Feeling Lost in Familiar Territory...

As a parent in my younger years, I would worry about such different things. Even without considering Epilepsy, life was different then. I remember my oldest child being so clean. Never letting her experience getting dirty, playing in the mud or even splash in a puddle. There is clear photo evidence that with my second oldest child, I relaxed as a parent and he did get dirty. I am pretty sure that my third child was the first to actually play in the mud and when they all played blissfully, sitting joyfully in a big mud puddle waist deep... I learned that it does indeed come off. By the time Brynn, our fourth child was born just about anything was game. It was like I had a different kind of child. He would spend hours playing in the dirt with his trucks. He was all over the place... so much energy... so much determination... He would literally fall asleep standing up and wake up running. When Brett came along I clearly remember thinking that he too was in Bryan's league. He had that same hyper, curious look in those same big blue eyes from early on. 

Ah, those blissful days of not knowing what was going on… 

It is the Lord who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed. 
(Deuteronomy 31:8)

I watch and listen in the quiet of the night… 

A jerking hand, a leg twitching… a gasp, snort, giggle, a moan or grunt… 

Things I would have never heard 3 years ago take on a whole new meaning. Listening and watching… hand raises, eyes open, pupils dilate… Will he pick at the blanket? Will he chew a hole in his inner cheek or will it be his toungue? Will it stop or will it go on? I feel like I am reliving a nightmare. It is so much worse when you already know what can happen. I don’t want to watch, I just want it to go away. I don’t want to see his sparkle taken away. I am out of my comfort zone. 

Feeling lost in a place I have never been before, yet it feels familiar...

The Lord is a refuge for the oppressed, 
a stronghold in times of trouble. (Psalm 9:9-10)

Just like in my early days of Motherhood when I thought I knew it all… Here I am once again, questioning all I know and learning more about Epilepsy and seizures than I thought possible. I found out after the first two children that playing in dirt was actually good for them. Who knew that getting dirty actually was healthy for children? I found out with Brett’s diagnosis that a simple Partial seizure can be just as frightening as a Complex Partial. I found out too that I don’t know as much as I thought I did about Seizures. For the first time in a long time, I find myself questioning what I have missed in Brynn. Brett is teaching me so much about seizures that do not have stiffening, shaking or postering involved. Visual disturbances, floating and odd feelings seem to be a big part of his days.

Who knew a child could feel this way and they actually think it’s normal? I would like to go back someday to those giddy days of parenthood when my heart didn’t skip a beat every time I  heard an odd sound through the monitor. I honestly don’t remember what it’s like not waiting for the big one… To softly, gently drift off to sleep without a worry, besides how to remove the dirt from that new Elmo shirt. Epilepsy has stolen a lot from our family. It has stolen parts of Brynn that we can't get back. It has stolen time, laughter, peace... I can only pray that whatever this is can be stopped in Brett. My heart hurts looking at his sparkle flickering... It hurts to even think that seizures could at any moment take his sparkle away... It's like watching a train move slow motion straight for a mountain... when you can't see the opening. I cry out to the Father, please let that opening be there, please don't let this do to Brett what it did to Brynn. Daily, I struggle to keep it positive, no matter what... I did find out how to remove the mud from that new Elmo shirt. Just a long soak in the sink and it was gone. Much like that mud stain, it will take time to let Brett's diagnosis sink in and become clear. Likely, Much time will pass before we have full answers and prayerfully one day we will all be able to not worry about seizures... I have never had a sense of direction. When I get lost I have no way of determining where I am or how to get where I need to be. Recently, this led to me being lost for an hour in one smaller part os a larger city, thinking I was somewhere else. In this situation, the worst thing you can do is keep driving. Without assistance from anyone, you make it worse by getting further disoriented and likely driving away from the solution. Looking at the map when I got home, it was easy to see what I had done. Such is our Epilepsy journey. With a great Doctor, Brynn's history and Brett's diagnosis we will have to work together to try to get this figured out and be where we need to be. I don't just want to know the genetic side of things, now I "need" to know. Most of all I will be depending on God to keep us sane in the process. It's a scary place to be... but with God's strength, mercy, grace and peace we can too get through this.    

Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings. (Psalm 61:1-4)

November is Epilepsy Awareness Month.

If you would like to send Brynn and Brett a card or a letter, email me at:

 PrayerOfFaith4u @ gmail . com (no spaces) 

with "Epilepsy Warrior Boys" in the subject and I will send you our P.O. Box address.

If you would like to know more about this newly revealed seizure type for us, (Simple Partial) this is a great resource:   

https://www.epilepsyfoundation.org/aboutepilepsy/seizures/partialseizures/simplepartial/

Peace I leave with you; my peace I give you. 
I do not give to you as the world gives. 
Do not let your hearts be troubled and do not be afraid. 
(John 14:27)

Birthdays and Bittersweet Realities... and what I have learned...

Tomorrow is Brynnon's 14th Birthday!!!
On this day it was at 2 AM exactly 3 years ago that my life changed forever. Brynon had experienced his first known 5+ minute Tonic Clonic Seizure in Jan. 2009. We were told that everyone is allowed one seizure and he wouldn't have a seizure while sleeping again, it was very rare. We were also told it would be very unlikely that he would ever have a seizure again if he remained seizure free for a few weeks. After a year, we could no longer worry... 

Three years ago.... Brynn requested to sleep on the sofa bed that night after a friend had come for the weekend and gone home. As I sat blissfully nursing Abigail in the early morning hours... Brynn peacefully sleeping on the sofa bed. I saw him look at me, his face filled with terror. I called his name and his eyes rolled back as his body flexed and stiffened. I cried out to God and kept calling his name with no response... His lips turned blue as time seemed to stand still... I screamed for anyone in the house to come to no avail... 

I placed Abigail down and turned him to his side as his body violently convulsed... 

Mouth foaming and the painful reality that had I not let him sleep on that sofa bed, I may have never known... 911 was called... still not breathing... 

Fire engine came just as he was entering the postical stage and his body in a deep sleep finally starting to breathe... 
The intense Fear of the unknown was overwhelming... 

I watched Brynn sleep for several months on that sofa bed and began to identify different seizure types. I learned fairly quickly that he was seizing almost every night and that not all seizures were Tonic Clonic. In the year that followed I researched and learned more about Epilepsy than I had ever believed possible. I learned too that Moms have an instinct that no one else has when it comes to their precious children. I also learned that this wasn't a simple take your medicine and it will go away issue.

This was a fight for answers battle that continues to this very day. My sweet little boy said he wanted to die with the first med... the second helped but did not give complete control... I went for a second opinion when the neurologist he was seeing wouldn't answer phone calls and didn't even take the time to read his 24 hour Video EEG before our visit 2 weeks after the test. The New Neurologist hit the nail on the head before any testing was even done, based on seizure history, Neuropsychologist report and all his medical files that were sent before the appointment "I believe your Son has Malformations of the Cerebral Cortex." We did his fourth Video EEG and it was confirmed, the prior neurologist was completely missing some important information. The third medication had the same effect, helped but wouldn't completely make the seizures go awayAnother EEG confirmed that Brynnon is "Refractory and his EEG's looks like Encephalopathy." Fourth and fifth medications had the same effect... Refractory or Intractable Epilepsy means that medications either do not work well or do not work at all in treatment and prevention of seizures. Sadly, about 1/3 of all Epilepsy Patients will become Refractory at some point. In Brynnon's case, long term untreated seizures likely caused him to remain refractory. I have experienced a lot of pain in the past three years... but I have learned so much about myself in the process. I have learned too that Abba Father certainly knows exactly what we need and when we need it. I have learned to dance in the rain of uncertainty as well as how to let go of things that I have no control of. Most of all, I think I have learned that ignorance may be bliss, but it also can be dangerous. I am forever grateful to God for giving me the strength to move forward... I am also thankful for everything else I have learned... 
 I have learned what Seizure Sick looks like... 

 I have learned what the VNS can do, as well as what it cannot do... 

 I have learned that you have to work hard for the things you need, and depending on other people is not a good idea.... 

 I have learned that even even a medical professional saying the "R word" can be painful... 

 I have learned that some seizures are invisible...  

I have learned that Doctors can be uneducated too... and worse, they can be wrong. Always follow your gut and demand answers...  

I have learned that Epilepsy can affect more than one child of the same family and when it does wanting answers to WHY becomes priority more than ever before...

 I have learned that we may well feel like running from difficult times, and if you insist on running... Pleased do run in the right direction... 

 I have learned that seizures can go unnoticed even by medical professionals without the proper test...

I have learned that God gives us exactly what we need to get through trials and tribulation, sometimes they come in unexpected packages...  

 I have learned that capturing smiles is a lot more fun than capturing seizures in pictures and videos... 

 I have learned that sometimes being silly is the only way to learn to smile through and fight the seizures...

I have learned that God sends special people in your life, exactly when you need them. Friendships come from unexpected people and in the midst of tremendous storms... those sweet blessings never fade from memory...

 I have learned that a picture can tell a powerful story, but it cannot really tell the whole story... 

I have learned that our children will grow up to be men one day,

and what they see they will   repeat...  

I have learned that it really is the simple things in life that brings the most pleasure and the most precious memories... 









The past three years have brought a roller coaster ride that I never wanted to get on. I fought and cried to get off many, many times... but as everyone does, I had to learn that everyone has their own journey. It doesn't matter what your journey brings, it matters where it takes you. Trying to remain focused on the positive in any situation helps keep peace in the midst of the most terrifying storms. Strength doesn't come through cowering down, it comes through fighting through the storm, no matter how powerful it seems. I have learned many things in the past three years. Some things I had to fight for, some I had to fight through, some I wish I learned so much sooner and some still that I wish I never had to learn. I wish to thank all of you Epilepsy Warrior Mommies and Daddies... May God grant all you other Epilepsy Warrior Parents the strength to continue to push through. Your love and support through my journey has brought me so much knowledge and wisdom as well as strength.  
"2 Cor. 1:2 Grace be to you and peacefrom God our Father, and from the Lord Jesus Christ. 3 Blessed be God, even the Father of ourLord Jesus Christ, the Father of mercies, and the God of all comfort; 4 Who comforteth us in allour tribulation, that we may be able to comfort them which are in any trouble, by the comfortwherewith we ourselves are comforted of God. 5 For as the sufferings of Christ abound in us, soour consolation also aboundeth by Christ. 6 And whether we be afflicted , it is for your consolationand salvation, which is effectual in the enduring of the same sufferings which we also suffer : orwhether we be comforted , it is for your consolation and salvation. 7 And our hope of you isstedfast, knowing , that as ye are partakers of the sufferings, so shall ye be also of theconsolation."

~Denise

Epilepsy Storms

September... not even over and it has been a month. I took Brett to a local Dr. and showed them a video of him I captured while recording Brynn having a seizure. Could be Parasomnias, could be seizures hard to tell... So we were referred to Children's Hospital to let a Neuro view it. Due to Brynn's history, it was decided to do a sleep deprived EEG first and order a 2 day once insurance approved it. I took Brett to Children's Hospital to have a Sleep

Brett at Children's

Deprived EEG on the 17th. I knew what I saw... Had no doubt that something was wrong as soon as he fell asleep. When the Technion got up and placed an extra wire on him in a precise area, I knew... Well, let me tell you...
 

Chelsea SUDEP awareness walk!

When I saw the number on the caller ID, I took a deep breath...
   Turns out that 20 minutes of sleeping was enough...
   Enough to confirm he does indeed have seizures... Enough to identify a focal area (Left Parietal). He was started on Keppra. The two day EEG is not even needed to confirm, no doubt about it he has Epilepsy.
  I was so mad that yet again a child was overlooked, ignored and medically neglected by Physicians.
I am so grateful that this one listened ..

and confirmed that yes, he did need to be sleeping to get an accurate EEG. I am so upset, that he has suffered needlessly because that Pediatrician would not listen. I do not have all the details yet, but his MRI was okay. He does have dilated blood vessels in the top part of his brain and there are blotches in them. I don't know what this means, but it is recommended that he have a follow up MRI. The neuro said that this doesn't have anything to do with his seizures and is not the cause of them.

I have a hard time facing and getting through the fear that Brett has the same thing as Brynn and where this will go. I have already lost precious pieces of one little boy...
I only get to see a little sparkle of the boy he once was randomly over days, weeks and months...

Brynnon 2009

Like glitter falling....
Pieces of him disappear....
The winds of seizures....
Just take his sparkles away.... 
They steal his memories and they steal his laughter...
Brynn's seizure count by the 17th was 16, almost his whole total August seizure count. We have  just raised Brynn's Onfi to his max. On to the next drug once this honeymoon phases out as he is now maxed out on all three drugs again...  seizure count by the 17th was 16, almost his whole August seizure count in mid month. I know this will get easier over time, just harder with Brett. I didn't know anything about seizures or Epilepsy with Brynn. Now I not only know, I also know

what can happen. I can't change it, I can only accept it is what it is... We will fight this Epilepsy Monster... as we reach out for the obvious answers... Why Brett and Brynn? Is this Epilepsy monster waiting in the shadows to touch another of my precious children? Where did it come from and will it be passed on by our other children or them? I layed in bed one night some time ago and watched as a seizure started.

...No panic, just prayer... It occurred to me at that moment that a seizure is like a storm. It's like lightening in the brain causing the seizures. So I prayed "Peace Be Still." When I heard the song "Praise You in the storm by: Casting Crowns recently... That song took on a whole new meaning. I will praise Him in the storm... That is my Epilepsy theme song now! I will dance in the hallway while waiting for the door to open... Trying not to fear what "could" be and accepting what is at the present moment.

Brett Epilepsy Alert Band 9/25/13

                 .............. We NEED A CURE!..............

Emotional Inventory

Every now and again it is good for the soul to do a little emotional inventory. In the church years ago, I was taught that emotions are just feelings and not to pay any attention to them. I have learned over the years, it is imperative that you do pay attention to them. The emotions are so often overlooked in the run for perfection feeding the intellect and the will of a person. If you leave emotions out of the equation, you end up taking action without evaluating how you feel about it. We may want to do something, the will says yes, but the emotions are there saying no... 

Please don't! Tonight, I find myself thinking about so many different things. I find myself feeling all sorts of emotions. Brett went for his first neurologist visit today. He will go in a few weeks for a Video EEG & MRI. It is a strong possibility that he is indeed having seizures. He will return for an extended 48 hour Video EEG as soon as the can get the insurance approval and the appointment scheduled. His answers will come, and there are a lot of emotions that I am feeling about it all... Seems a bit overwhelming at the moment, I have so many other emotions to deal with at the same time. Gosh, it makes me so mad... Just the thought that seizures may have 

been overlooked by medical professionals once again, now in Brett is taking it's toll on my sanity. We have been through so much these past few years in this Epilepsy battle. I refuse to give up hope, I figure worst case scenario if Brett is diagnosed with Epilepsy and is similar in any way to Brynn... Perhaps it will lead to answers as to WHY and prayerfully better solutions.

 So, my emotional inventory is being worked out as I type this. We will get through this valley as all the others that we have been forced through. Not only will we get through, but we will get through and come out stronger than ever before in faith and willingness to fight. I am a human being... I get mad, I cry and I laugh for lack of anything else in good times and bad. One thing I try to do is hold on, knowing that God would never give us more than we can handle. I just know that there is a reason and a purpose for all things, and all things work together for good in those that love God. Brynn's seizure count for August 22, much better than last August bringing 65! Keep the faith and try, try, try to stay positive! I will post an update when  I have more answers!

   

What is Intellectual/Cognitive Disability?

What is Intellectual/Cognitive Disability? (formerly known as Retardation)

Students with MID may demonstrate some, all or a combination of the following characteristics:

• 2-4 years behind in cognitive development which could include math, language, short attention spans, memory difficulties and delays in speech development.
• Social Relationships are often impacted. The MID child may exhibit behavior problems, be immature, display some obsessive/compulsive behaviors and lack the understanding of verbal/non verbal clues and will often have difficulty following rules and routines.
• Adaptive Skill Implications. (Everyday skills for functioning) These children may be clumsy, use simple language with short sentences, have minimal organization skills and will need reminders about hygiene - washing hands, brushing teeth (life skills). etc.
• Weak Confidence is often demonstrated by MID students. These students are easily frustrated and require opportunities to improve self esteem. Lots of support will be needed to ensure they try new things and take risks in learning.
• Concrete to Abstract thought is often missing or significantly delayed. This includes the lacking ability to understand the difference between figurative and literal language."                                                                                                                                     Source:  http://specialed.about.com/od/handlingallbehaviortypes/a/MID.htm                                                                                                                                    
  Cognitive Disorder NOS Symptoms and Diagnosis Overview:
  Cognitive Disorder NOS symptoms and diagnostic criteria follow below. While some of these Cognitive Disorder NOS symptoms may be recognized by family, teachers, legal and medical professionals,  and others, only  properly trained mental health professionals (psychologists, psychiatrists, professional counselors etc.) can or should even attempt to make a mental health diagnosis. Many additional factors are considered in addition to the Cognitive Disorder  NOS symptoms in making proper diagnosis, including frequently medical and psychological testing considerations. This information on Cognitive Disorder NOS  symptoms and diagnostic criteria are for information purposes only and should never replace the judgement and comprehensive assessment of a trained mental health clinician.
  Cognitive Disorder Not Otherwise Specified
  This category is for disorders that are characterized by cognitive dysfunction presumed to be due to the direct physiological effect of a general medical condition that do not meet criteria for any of the specific deliriums, dementias, or amnestic disorders listed in this section and that are not better classified as Delirium Not Otherwise Specified, Dementia Not Otherwise Specified, or Amnestic Disorder Not Otherwise Specified. For cognitive dysfunction due to a specific or unknown substance, the specific Substance-Related Disorder Not Otherwise Specified category should be used. 
  Source: http://www.psychtreatment.com/mental_health_cognitive_disorders_nos.htm
  and finally....
   Recurrent, spontaneous, unprovoked seizures—that is, those associated with epilepsy—affect 3–5% of the population worldwide.^[32,55] The incidence of epilepsy in childhood varies among different age groups and geographic locations. Data from a variety of epidemiological studies have indicated that recurrent unprovoked seizures occur in 1–2% of children, with the highest incidence in the 1st year of life. The incidence of epilepsy plateaus in early childhood and decreases after 10 years of age.^[17,31,33] Approximately 10–40% of children with epilepsy will continue to have seizures despite optimal medical management with AEDs.^{[13,16,25,57]} It is important to be aggressive in the diagnosis and treatment of medically refractory epilepsy in children given the adverse effect of recurrent seizures on early brain development, learning, and memory. Moreover, young children with this intractable disorder may be better candidates for aggressive surgical treatment because of the increased neuroplasticity of the developing brain.^[19,23,71] Other treatment modalities, such as a ketogenic diet and vagus nerve stimulation, can be considered in children who are not good candidates for epilepsy surgery.^{[34,41,44,54]} In this paper we review the definition of medically refractory epilepsy and consider the evaluation of children with medically intractable seizures for surgery. 
  Source: http://www.medscape.com/viewarticle/581652
  The above are descriptions of Brynn's diagnosis to date. Home Schooling does not cause lower IQ. Epilepsy cannot be faked with recorded Video EEG Clinical Seizures. So for the two hateful, spiteful ignorant people that persistently talk about my child as though you know what your talking about...  Why don't you get a life and stop pretending that you ever cared. 

11/18/11

 So Wednesday Brynnon had a Tonic Clonic seizure while awake. He was eating stood up, sat in a living room chair fell and started the clonic jerking. Unusual for Brynnon because he has never had a tonic clonic while awake. I am so thankful that he did not get hurt, a few more inches and he would have hit his head on the cedar chest... Thankful too that it was quick, as the last thing we need is further regression. He asked what happened... and he knew himself that things would have to change. For the last several months he has been riding the Scooter, his favorite thing to do. He loves that thing has a cool Motorcycle helmet to wear while riding... our next door neighbors chipped in and bought it for him to ride. It's two wheeled... which means he would fall over if he had a seizure while riding it. He will not be able to drive the scooter for a while. Although it wouldn't likely happen and he may stop if he has the aura he had before this seizure... there is just no way of being safe on it. I wish it had three wheels... or four.  Yeah, four wheels would be great! So of course when he woke up Thursday he started talking about the 3-wheeler that the neighbor gave him. Yeah, that has become his focus now, he wants to get that fixed. His poor brain has not exactly been up to par since Wednesday. Hope that he will start improving again, his behavior has been just awful too... but it wasn't all that great last week either. So the protocol is if he seizes during the day and looses contentiousness give him a Klonopin... if he starts clustering or has anymore give him another Klonopin 6 hours later. If he has one longer than 2-3 minutes or has any back to back, take him to the nearest ER or call an ambulance. That first Klonopin he had did not make him go to sleep, he took it at 7:30, talked to the Neuro on call again at 1:30 AM and he was still up and rather hyper. Had him take the second one and his butt was asleep by 2:15! 

 I have been congested in my chest the last 2 days. I hope it will go away after I get some over the counter stuff... Abigail is being such a cutie... Gosh, she is getting so BIG. It is hard to believe it has been a year and a half since she was born so small... She has gotten taller these past few weeks, and actually looks like a little person now, not too much a baby anymore. What a blessing she has been in my life, I am so thankful to have her to hold... she is such a snuggle bug! Bought her a few things for her Hannukkah gift. A block sorter, wood train and some big blocks. Bought a magic set for Brynn or Brett too. Haven't decided which one to give it to. Can only afford to spend about $30 for each person. Found Janice and Tera something that I think they will both like. Haven't figured anything out for Bri and Brandon either. Figured I can just do a little for each one... :) Wish there was a Dirt Cheap close by!