Wednesday, November 30, 2011

Buzz-Worthy News

"Change is the handmaiden Nature requires to do her miracles with."
-Happy Birthday Samuel Clemens (Mark Twain), from "Roughing It"

As November comes to a close, December comes to a beginning, and the Brayden Alexander Global Foundation for Hydranencephaly approaches it's 6-month mark of existence on December 14th; the board of directors and myself, along with some faithful and hardworking volunteers, have been working on some pretty amazing endeavors.

One of our primary projects brings the introduction of a foundation newsletter, which will be accessible through our web site at and easily shared via a clickable link. The newsletter will begin as a quarterly publication, growing as it's necessity grows, and will recognize our projects, awareness campaigns, family involvement  events, and fundraising goals. It will also serve as an invaluable communication device for disclosing all details of the foundation and our progress, especially to make HUGE announcements and recognize our little bees for their amazing achievements.

"The difference between a Miracle and a Fact is exactly the difference between a mermaid and seal. It could not be expressed better."
-Mark Twain, from "Official Report to the I.I.A.S," Letters From the Earth

I am only allowed to make one early announcement from our newsletter debut here on our foundation blog. For the rest of the buzz-worthy news, you will have to await the launch date of our first newsletter on December 10th... but please know that you will not be disappointed with what we have been up to! As for the early announcement...

I am thrilled to announce the addition of the position of Family Liaison to our foundation's group of hardworking volunteers: Jennifer Bauer. Jenn is an angel mommy to beautiful Gabby residing in Ohio, United States & has proven to be a great asset to our team by being immensely involved with our Family-to-Family Resource Network and Hydran-Angel Families Network, both on Facebook. She has diligently worked on personal projects while linking them to the foundation as well. We look forward to having her be our lifeline to our families, the people who we are here for, when we cannot always be. Please take a moment to recognize her via email or Facebook
And now... start counting down the days until December 10th when we will be announcing some no less than amazing news, I assure you it will be worth the suspense of the next 10 days!

Monday, November 28, 2011

Bee Inspired: A Letter to you, From a Special Needs Mom

As the holidays are upon us, I will be striving to bring you stories of inspiration... stories to warm the heart. We have witnessed many of these same stories ourselves, which I will share, along with other bee-family stories submitted. 

Brayden, for example, has the keen ability to have conversation with others who "speak his language" that most do not understand. He draws those people close, while remaining oblivious to the stares and snide remarks from people who do not understand, nor want to know him... this remains the biggest lesson he teaches me, to spend the time I have with the ones who care and not on the ones who do not. The following is a shared plea to all those that don't, who can't; those that are simply ignorant to the love that our children emit... or who aren't sure how to be close and/or make a difference in their lives. It's difficult, I know, to be comfortable in a situation that is out of the norm. Compassion and love, or a warm and genuine smile, can go a long way in making the day of a special needs parent and child much brighter...
"We shall never know all the good that a simple smile can do." ~Mother Teresa

A Letter to You, From a Special Needs Mom
Columnist: This Modified Life / Just Ask Jo

You don’t know this, but I’m counting on you.

We’ve never met, and yet every single day I think of you and hope that when the time comes, you’ll do the right thing; that you will be kind, that you will be considerate, that you will be compassionate and caring.

I’m counting on you to make a big difference with small gestures of good will; to be patient and accommodating, to be willing to make sacrifices, to inspire others to go the extra mile.

You’re a stranger, who will someday cross paths with my special needs child, and I’m counting on you to do right by him.

Recently, as my boys and I were in the parking lot of our local indoor pool, which also serves as a rehabilitation center for community members, I witnessed an exchange between such two strangers. I watched as a severely disabled young man, non-verbal and vulnerable and strapped into his wheelchair, was assisted by the bus driver who would be taking him home.

She was a tiny thing, her uniform clean and pressed, her name badge glistening in the sun as she gently guided the gentleman’s wheelchair onto the lift; she took her time, making sure he was safe and comfortable, and it was obvious she took great pride in her work.

But what really moved me was the way she acknowledged this young man, despite his inability to communicate traditionally. There was no way to tell just how much he was able to absorb or understand, but that didn’t matter to her. She gave him her full attention, looked directly in his eyes, and smiled as she spoke softly to him.

To the naked eye she was a bus driver. To me, she was an angel.

Seeing her kindness and dedication to helping someone in need made me realize my own son’s dependence on others; I tightened my grip on Andrew and made a silent plea to the universe to make sure as many of these angels in civilian clothes crossed his path as possible.

But I figured a direct appeal to you couldn’t hurt either.

Here’s the deal. I don’t expect you to understand what I mean when I say I spend every waking moment worrying about my son’s safety, his total dependence on others,  and his place in this big, often impatient and fast-paced world. It’s not your job to empathize with me and I definitely don’t want your pity. That serves no one and the truth is, we all have some sort of cross to bear, special needs kids or not.

What I do expect, what I do want to believe in, is that when the time is right, when my son does cross your path someday, somewhere, somehow, that you will act upon an intrinsic instinct nestled deep within you, and help him up if he falls, guide him if he gets lost, protect him from forces he cannot control and doesn’t understand, and accept him as an equal, worthy of respect and recognition.   

Like I said, even though we’ve never met, I’m counting on you, and I just thought you should know that.

And now that you do

I know you won’t let me down. 

* * *

This Modified Life is a column by Jo Ashline for and about the families in Orange County living with special needs. Jo is a freelance writer and married mother of two. 

Saturday, November 26, 2011

Bee Aware: National Epilepsy Awareness Month

Children living with a diagnosis of hydranencephaly are possessing very little to no cerebral cortex. Seizures occur when neurons within the cerebral hemispheres of cortex misfire and create somewhat of a electrical brainstorm. With those two facts presented, many doctors disbelieve in the fact that hydran children can have seizures... no cortex, no seizure... contrary to the finding of most with a confirmed diagnosis, are also being diagnosed and treated for obvious seizure activity with special diets and/or pharmaceutical interventions. This information is not only for those parents/loved ones... but for everyone, with another reminder that epilepsy does not discriminate, in fact affecting about 3% of the world's population.

I personally lived in somewhat of a denial for a couple of years, that we just may be the "lucky ones". The parents who did not have to watch their child, already battling so much living with hydranencephaly, also have seizures. However, even when my own 'lil man's "spells" progressed in to more defined episodes, as opposed to the typical absence seizures that Brayden experienced since birth, I still allowed myself to play in to the neurologist's belief that these were not seizures... rather an exaggerated startle reflex. After all, the EEG showed no abnormal activities, which the neurologist quickly pointed out as evidence against possible seizures. After further thought, of COURSE the results were inconclusive without cortex for the EEG to read activity from! And to add to this inability to read any sort of cortex activity is the fact that many also has hydrocephalus, a severe build-up of cerebrospinal fluid (CSF) which also clouds the EEG's ability to see what's going on in there.

Brayden does not have any visible cortex while some children do have varying degrees of remaining cortex. Where on earth, then, would seizures come in a child missing cortex which just so happens to be the site of ignition in seizure activity? Seizures definitely exist in our little ones. Some instances may be stemming from preserved cortical mantle and/or cortex that is obviously abnormal. Other instances may be derived right from the stem... the brain stem, that is. 


Unfortunately, brain stem seizures are not believed to exist by many neurologists, in fact I have yet to meet one who does believe them to be possible. However, while little research on the topic exists, it is a medically possible phenomena which is supported by many articles and medical journals.

For Brayden, he started having typical absence seizures as a baby. These are pretty harmless, causing him to just stare off in to space for a few seconds at a time. There are no convulsions, no hypertonicity or muscle rigidity, no crying, no slowing of his breathing... literally easy to miss if you're not paying attention, especially if you're not his parent and used to his "normal" eye movements.

These seizures never really went away, but they're definitely not as common. Part of the issue was believed to be weak eye muscles, which were strengthened with the addition of his infamous glasses. These seizures have progressed a bit in to more atypical absence seizures, meaning that they last longer, are much more obvious of being a complete mission to another world, and present quite a bit of tonic movement with them. Otherwise, they've been relatively replaced by a host of other seizures activities, which have gotten progressively worse as of late.

Most importantly, whatever is going on in there, I know that his consciousness is hugely impaired. Not a huge biggy for some, but for a 'lil one living with a condition deemed incompatible with a conscious life.. it's huge!! We can't afford to risk these moments of consciousness with unconsciousness at any rate. This gave Brayden the official diagnosis of complex partial seizures, simply due to this lack of consciousness. 

The scariest to experience: tonic-clonic seizures. His muscles stiffen up so tight that he even stops breathing at times, if not completely than it is deeply shallowed. He turns completely red, then awful shades of blue, blotchy, and his eyes dilate considerably making these episodes look even more scary (as his sisters would say, "zombie-like"). They happen quite often during sleep, which is why I'm thrilled to now be the "un" proud owner of a pulse oximeter to alarm us to these episodes. They do not have any rhyme or reason since they happen during the day too; no known triggers either. Because of the rapid jerks, or myoclonic jerks, during and sometimes separate, he is also experiencing another epileptic symptoms associated with various other seizures. 

Seizures pose a severe risk to these little lives and definitely diminish their well-being. Heart rates skyrocket, for Brayden up in to the 180's or more, and because of the intense stiffening of the body, breathing and swallowing become compromised as well. Although Brayden sleeps propped up at an angle, saliva will cause him to choke and vomit if he is not helped upright, with lungs open wide, and helped to get things back on track. Other times, since it happens so suddenly, he bites his tongue or cheek causing it to bleed. 

These are the worst episodes, which began by lasting simply seconds... but have progressed to about a minute or more. If he doesn't have a serious choking episode, he will generally come out of it smiling as if nothing ever happened. If he comes out of it choking, he is so exhausted afterwards that he will either take a nap or remain pretty dazed for an hour or so.

Please learn the signs of possible seizure activity, then do not let a medical professional convince you that treatment is not an option for your child with hydranencephaly because seizures just are not possible. The best proof to present to the neurologist: a video. Capture an episode on video for evidence, next to impossible when it lasts only seconds. But when seizures are suspected and you're battling medical impossibilities, video evidence is the best.

Friday, November 25, 2011

Flashback Friday: Vegetative State of Mind

Again from my original blog, Small Portion of a Life's Journey, this post was originally made in January 2010. This topic still remains one of the utmost controversial topics surrounding hydranencephaly, as well as many other devastating neurological conditions and traumatic brain injuries:

A Vegetative State of Mind
By Ali Harper, Small Portion of a Life's Journey

Just a quick quip in to this controversial topic, a "vegetative state". Remember, if you've been following all along, that one published definition of hydranencephaly places children in a non-responsive, vegetative state. There have also been numerous cases in the court systems, even some spotlighted in the media (such as Terri Schiavo's case) arguing the level of consciousness of these patients who are believed to be in this supposed "vegetative state" and trapped in a life not worth living. I have even argued this point myself with people in my life, who have inadvertently read these "facts" about hydranencephaly, placing my son in this "vegetative state" which simply doesn't exist in my eyes.... or in the eyes of anyone who has ever taken the time to know him.

This notion came to mind once again while watching a rerun of the show House late last night. The doctors were openly discussing a personal matter, and when one questioned the other about the timing, "oh don't worry, they won't be repeating this to anyone," was mentioned over the patient deemed in a coma, or said "vegetative state".

How, when the brain has proven time and time again to be such a mystery, can professionals in the field of cognition be so sure that a person is indeed "brain dead"? Look back a few posts at my own son's MRI images, and imagine what prognosis a professional would give based solely on those scans. Most, myself included, without a formal education on the brain, would not correlate those images with a living being. It seems medically impossible...

Here is a short article showing the importance of gaining a better understanding of this "vegetative state":

Vegetative Patient Answers Yes and No Questions With His Brain
By Kyle VanHemert

Raising questions about the definition of a vegetative state as well as what to do with people in them, a new study observed the brain of an unconscious patient responding to yes and no questions just like normal.

Of the 54 test subjects in the New England Journal of Medicine study, one man who had been diagnosed as being in a vegetative state some five years earlier accurately answered yes or no questions. The answers came by way of a brain scan conducted by an MRI machine.

[Image]As shown in the image above, answering "yes" and "no" registers activity in different parts of the brain. When the patient was asked if his father's name was Thomas, the scan showed his brain indicating "no." When asked if his father's name was Alexander, the scan showed the correct answer of "yes."

The study brings up some sticky issues involving the ethics of treating vegetative and seemingly vegetative patients. But it also provides scientists with rare insight into the elusive nature of human consciousness itself.
What's that? The patient is in a coma, they are "brain dead", they don't know what is going on around them, they have no way of establishing any quality of life... they may as well be put out of their suffering and be allowed to dance amongst the angels in heaven. Here's a reminder: don't be so sure that the obvious is so obvious... yet another proof in miracles and medical mysteries.

"It’s always too early to quit." 
~Norman Vincent Peale

"When the world says, “Give up,”
Hope whispers, “Try it one more time.”
~Author Unknown

Thursday, November 24, 2011

Bee-worthy Share: We Are More Thankful Than You Are

From a fellow special needs blogging mommy, This post has been flying all over the web since it hit her blog. Of course, it's a must share... An enlightenment to the differences that exist, hope that some will slow down and appreciate everything they have... Not just today, on Thanksgiving, but every day!

Uncommon Sense: We Are More Thankful Than You Are:

(By "we" I mean parents of kids with special needs. By "you" I mean parents of normal/ average/ typical kids.)

Ok, so thankfulness probably isn't supposed to be a competition. And before parents of typical kids stop reading---or start sending hate mail---let me quickly say that for a few months I was a parent of a typical kid, and I sure was grateful. I celebrated her first smile (right on track at 6 weeks), gleefully welcomed her first laughs (which we even have on video) and appreciated the heck out of my lovely, growing, happy, healthy baby girl. Had some parent of a kid with special needs tried to tell me "We're more thankful than you are" I would have bristled like a porcupine, shot some eye daggers, and thought passive aggressive things.

But really, it's kind of true.

A parent of a typical child has the luxury of "taking things for granted"-a phrase so overused that it's worth taking a minute to really break that down. In taking something for granted, one accepts something as a given or true, often without showing appreciation. While all parents wonder and worry about the future of their child, the worries of a typical parent have an undercurrent of things-taken-for-granted.

Will she get good grades? Of course she'll recognize letters and numbers, and learn to read, and do math, and understand abstract ideas like weather and history. And obviously, she will be able to hold a pencil and learn to write and sit in a desk and listen to the teacher (sometimes, anyway).

Will he play sports? Of course he'll stand independently, and walk, and run, and jump, and climb stairs, and not need a walker or a wheelchair or a cane.

Will he be teased? You know, not "when will he be teased" or "will he understand when he's being teased" or "will he ever have friends who will just accept him as he is" or "will he have the strength and resiliency to rise above the kids who tease him, because, oh yes, there will be kids who tease him."

Will she get married? Of course she'll have relationships and date and all that jazz.

Will he go to a good college? Will he stay on the path to college? Of course he'll go through K-12 like everyone else, graduate high school and be college-ready, if that's the path he chooses.

Will she make good friends or fall in with the wrong crowd? Of course she'll have meaningful friendships and relate to other people and get phone calls from her friends and have sleepovers and hang out with people besides her mom and dad.

Parents of kids with special needs lose some of those things-taken-for-granted (some families may lose all of them, others may only lose select ones---like if their kid can walk and run just fine but may not interact with other kids). Realizing that nothing is a given for your kid . . . not even the simple ability to someday say, "Hey Mom, what's for dinner?", well, it makes your heart implode.

But then . . . over time . . . progress happens.

When a new skill emerges you are thankful----and then you see that what you thought was truly "thankfulness" before was just a shadow of the real thing. Like the way you think you've had good apples, but then you have one fresh from the tree and are like "Holy crap! That's an apple!" or how you thought dial-up internet was perfectly great and then you got a modem and were like "Whoa---this is a whole different world!"

This is a whole different world.

Maya has been walking for nine months now, and to this day there has not been a single time that I've watched her walk/run down a hallway without think "I can't believe she's really doing it." A week ago she started eating waffles by herself (she holds the fork in one hand and feeds herself with the other hand, but whatever) and it was the first time in 3.5 years that she's eaten a full meal by herself. I didn't have to sit and feed her. It was amazing.

Walking down the hallway? Eating a waffle? These would, without a doubt, be things that my former self would have taken for granted from my typical child. But I notice them, I celebrate them, I am thankful.

I am so thankful.

There are other things---stepping-stone-skills, I think---that are totally life altering for us. When I first realized that Maya was learning to recognize letters, my entire world shifted. If I were a typical parent, I might have thought: Awesome---what a smart girl! She's already learning letters. Maybe she'll be an early reader, we could read stories together, etc

But as a special needs mom, seeing her recognize those first letters sent up a giant, shining, exploding firework-of-a-thought: She will be able to read someday. And then, not far behind: If she can read, someday she will type . . . so even if she never talks, she will type and people will understand her.

What a typical parent would mark as a stepping stone on the given-road-of-progress, I saw as a game changer.

That difference brings with it a more profound level of thankfulness. It just does.

2 years ago today, Maya had her brain MRI. 2 years ago tonight, we found out that her brain was normal. 2 years ago tomorrow, at the thanksgiving table, we were thankful for her normal brain . . . that's a profound level of thankfulness.

Yesterday we went to a "Thanksgiving Feast" at Maya's preschool. The parents all came and brought food and sat with the kids and celebrated . . . and I noticed one of the moms excitedly chatting with the teachers and aides and watching something on the teacher's cell phone. It was a video, taken by the teacher. Earlier in the day, her son had taken his first unassisted steps. Ever. Her little guy has been kicking butt with his walker for a few months now, but yesterday he let it go and took a few steps. And while we were there, he did it again, with both of his parents excitedly looking on. He's almost 4 years old.

And I watched him take steps, and I watched his mom & dad watching him, for the first time, take independent steps and I thought about how lucky I was to get to watch that moment. That moment that takes them from "I hope that someday he'll walk" to "He walked." From hoping that someday he would be walker-free to seeing that there's a good chance. From "Let's keep working towards independent steps" to "Let's work on more steps."

They are more grateful for those first steps than the parent of a typical child. That's just the way it is.

Happy Thanksgiving to everyone---near and far, old and young, typical and not-quite-as-typical. For the parents of kids with special needs, I hope that you can look back over the past year and remember some of your own game-changing moments, big and small. And for the parents of typical kids, I hope that you can look back at some of your stepping stone moments with fresh eyes and realize how much you have to be profoundly thankful for.

Tuesday, November 22, 2011

"Bee"-ography: Adoption Story

I am so thrilled to bring yet another adoption story from another of our "bee"-mommies, Heather. The adorable Mr. Tariku has a variant of full hydranencephaly, called hemi-hydranencephaly... he is missing half of his cortex, and as of 2001 only 7 cases had been reported world-wide!

Here's Tariku's adoption story: As we began the process for our third adoption, we originally were in the domestic infant program. However, as time passed and things were not moving along, we chose to dual list in the Ethiopia program at our agency, in addition to the domestic infant program.

As we waited, I diligently searched the list of waiting children in Ethiopia, which is when we first heard of Tariku. We prayed about him, and decided to ask our agency if we could have his referral information. Unfortunately, they had just that morning sent his referral to another couple. When we received that news, I was more devastated that almost any other time in my life.

We continued to pray for Tariku and his forever family. One week later, our social worker called to tell us that the other couple had declined Tariku's referral. She also told us that from the information they had received from the adoption clinic about his prognosis, it would probably be in our best interest to move on. 

My first thought: "In OUR best interest?! What about HIS best interest?!" 

We told the agency that we would still like to see his referral, and they sent it to us. I passed all the the written information and went straight to his picture - and it was all over from that moment on. But, I'm married to a realist, and he wisely wanted to take the time for us to pray about it.

And pray we did. Constantly. For about 2 weeks. During this time of prayer, the Lord continued to show us over and over and over that He wanted Tariku to be a part of our family, no matter what the future would hold for him. So, we said yes! 

Tariku was in desperate need of a shunt, with no neuro surgeon in Ethiopia to perform the surgery. So for the first time ever (at least with our agency), the Ethiopian court agreed to expedite the process to get him home.

At the time, it typically took 8-12 weeks from referral to finalization in Ethiopia, and then another 4-6 weeks after that before being allowed to travel to pick up your child. We accepted Tariku's referral the week of Thanksgiving, his adoption was finalized in Ethiopia on New Year's Eve, and we arrived in Ethiopia to pick him up on January 20. 

Since the moment we met Tariku, he has been amazing everyone who meets him, including the doctors! The first neurosurgeon we met with when we came home entered the room and said hi, then left and came back a couple of minutes later. He told me he left because when he saw Tariku, he thought he had the wrong patient. Tariku should not have been doing as well as he was. Good thing no one told Tariku! 

Tariku's adoption has blessed our family beyond measure! He has taught and is teaching us more than we could ever even dream of teaching him. We are blessed to call him son!

Monday, November 21, 2011

"Bee"-ography: Adoption Story

In wrapping up National Adoption Awareness Month, I hope to bring you some stories of adoption... of course, specifically those of some of our little "bees". The following is from Angela Mason, proud adoptive mommy to: Andrew, Katie, Chrissy, Stephen, Emily, and Joshua.

Adoption holds a special place in my heart. Being the adoptive parents of six beautiful children, there is no doubt that our family believes in Adoption!  In celebration of National Adoption month, I wanted to share our story about just one of our special kids.

God Sent to Me an Angel
By Paul Dammon 11/96
God sent to me an angel,
it had a broken wing.
I bent my head and wondered
"How could God do such a thing?"
When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."
"My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.
I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.
Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.
So if you find an angel
and you don't know what to do,
remember, I am with you,
love is all I ask of you."

Christina Ann was born December 26, 2000. Our family was in Florida on vacation that day. We had no idea such a special spirit was heading for our family. We arrived home from vacation on December 28th and on December 29th we got a phone call from our adoption agency, LDS Family Services, asking us if we would be interested in talking to a doctor in Temple, Texas about a little baby that had been born with a condition called Hydranencephaly. I knew nothing about this condition, but my husband and I agreed we would at least go to talk to the doctor. We were told this little baby girl would likely not live very long. This was a scary thought for us, as our two previous adoptions were healthy newborns. Our son Andrew, was 12 and our daughter, Katie, was 8 at the time we received this phone call. After prayerfully considering the situation we sat Andrew and Katie down and told them about this little baby and how she needed a home, even though she might not be here on this earth a long time. Both our sweet children said “Go get her!” 

My husband and I drove the three hours to Temple the next day. Upon our arrival we were ushered into the on-call neurologist’s office. Being the week between Christmas and New Years, he was the doctor who had been on call when Christina was born and he was still the only neurologist on duty for the week. He was not a pediatric neurologist, but he was the best they had available.  He sat down at his desk, peered over his glasses at us, and the first thing he said was “WHY would you want to adopt THIS baby?”   

He proceeded to tell us what Hydranencephaly was, that she was missing her brain, she was irritable, non-responsive, would likely be a vegetable and would die within weeks, or perhaps not even make the three hour drive home. He acted like we were insane for even showing up to talk to him.  The more he talked, the more convinced I became that I needed to get this baby out of that hospital!  I remember, when I finally got a word in edgewise, saying to him “And why would I NOT want to take THIS baby?” 

In my mind, whatever time she had on this earth, she deserved to be loved and cared for and to have a family!

The neurologist gave it one last shot, when he saw we were not being convinced to turn and run, by saying , “If we had someplace to send it, like an institution, we would have already done so.” That was the last straw for me! I said, “Can we please just see her?” and he shrugged his shoulders, got up and led us down to the NICU.  He turned us over to the head nurse, and walked away. I have never been so happy to see someone leave my sight as I was at that moment!

The nurse was gentle and kind. She had us scrub up and told us that yes, the baby was pretty irritable and had been inconsolable since her birth, but that she was eating well and seemed healthy to look at her.  She said it was such a shame, as she was a beautiful baby.  She led us through the door of the NICU and pointed to a bed in the far corner, saying “she is over there”. She left us to approach the baby on our own.  I walked over to the bed, where this little baby was lying on her tummy. Her head was turned away from me, and she was softly whimpering.  I leaned over the crib, and said quietly, “Hi baby”. 

Imagine my amazement, when this little girl lifted her head ALL the way up to look right at me! I picked her up, and she looked me right in the eyes, almost as if to say, “Well, THERE YOU ARE! Finally!”  The whimpering stopped and she snuggled her little head right into my shoulder, just as content as could be!  I was trying hard not to cry, as I turned around, and then saw that my husband was in tears!!  We both knew right then, in that moment, that Christina was OURS.

It was an agonizing weekend, as it was New Years weekend, and we could not get the paperwork completed until Tuesday the 2nd to have permission to take Chrissy home. I called the hospital several times a day checking on her and was so afraid she would die before we could get her home.  I busied myself by researching the internet, looking for information on Hydranencephaly. There wasn’t much, but I did find the Rays of Sunshine website, and the rest is history as far as support goes!! 

Chrissy came home to our family on Wednesday January 3, 2001. Not only did she make the drive home just fine, she was in surgery getting her shunt placed on Friday, January 5th and she came through that in flying colors also! Chrissy has been the greatest joy our family could ever have imagined. She is not just our middle child, she is the middle of our family – the heart of our home. All our children love her so much, the older and the younger ones. And because of Chrissy and her sweet spirit, our family came to a new understanding of adoption. 

Since we adopted Chrissy, we have adopted three more special needs children. Because of the joy she has brought to our family, we were able to see the possibilities and open our hearts to other children with health needs.  We will forever be grateful for the adoption worker who knew Chrissy needed a loving home, and who called us to see if we would consider her in our family! 

Chrissy will be eleven years old on December 26, 2011. ELEVEN YEARS! Pretty good for a tiny little baby who wasn’t supposed to live through the drive home from the hospital! She is happy, and though of course she has her challenges, she is still a healthy, thriving child. We thank God for her every single day. She has truly taught us to Believe in the Impossible!! 

Adoption is wonderful!! I suggest you all give it a try!!  LOL

Sunday, November 20, 2011

Bee Aware: National Adoption Day

While the entire month of November is dedicated to honor adoption, yesterday November 19, was National Adoption Day. This immensely special day exists to bring awareness about the over 107,000 children in foster care waiting to be adopted, and to finalize over 4,000 adoptions from foster care across the United States alone. Over 300 large events took place, with many other individuals celebrating throughout online communities.

Adoption is a key factor to take in to consideration as an expecting parent to a child with a medically complex condition as hydranencephaly, one that is most generally not offered as an option upon diagnosis. Our foundation hopes to make this a clear option, one that outweighs the more often offered option of a medically induced termination of pregnancy, as we navigate this journey that includes a family network of many adoptive parents to children with hydranencephaly. The misconception still exists that these children will not live the quality of life that would prompt a family to adopt them.

Some facts on adoption, from

Costs: Adopting from the U.S. foster care system is generally the least expensive type of adoption, usually involving little or no cost, and states often provide subsidies to adoptive parents. Stepparent and kinship adoptions are often not very costly. Agency and private adoptions can range from $5,000 to $40,000 or more depending on a variety of factors including services provided, travel expenses, birthmother expenses, requirements in the state, and other factors. International adoptions can range from $7,000 to $30,000.

While there may be a small fee required up front, any requirement that all fees be paid immediately following application should raise red flags. When talking with your professional, ask about the payment schedule, and about sliding scale fees if your financial resources are limited.

There are a growing number of resources to help manage the cost of adoption, including tax benefits (some of which apply to public agency adoptions as well), loans, employer benefits, and others."

          ~Adoption Subsidies: "also known as Adoption Assistance Payments (AAP), are   monthly payments made to parents who adopt children with special needs from the U.S. foster care system. The amount is based on the severity of the child's disabilities and is in no way related to the income of the adoptive parents. Subsidy (along with Medicaid coverage for the adoptee until adulthood) is meant to defray some of the costs associated with raising children. It is not meant to reimburse all expenses. It is not income so it is not taxable. It is not meant to take the place of child support after a divorce. It was designed to make adoption more affordable and therefore more feasible for the typical adult or couple. The average base amount nationwide is about $350.00 per month.

In 1980, Congress created the subsidy program (Public Law 96-272) to encourage foster parents and others to adopt waiting children because permanency offers important lifelong and generational benefits to children. This program has been very successful in three ways:

*in helping to reform foster care,
*in encouraging record numbers of adoptions, and
*in saving tax dollars that would have otherwise been spent keeping children in foster care.

          ~Active Duty Military Adoption: you are eligible for reimbursement of expenses up to $2,000 for the adoption of a single child and up to $5,000 per family per year. There is one caveat: The adoption must have been arranged through a source that is authorized by a State to provide adoption placements, if the adoption is supervised by a court under state or local law. Paid after the adoption is finalized, this benefit is not doubled if both parents are in the military.

Fees that can be reimbursed include agency fees, legal fees, placement fees, and medical expenses. Travel expenses were not originally covered when this program was introduced, but they may be covered now.

Military parents can exercise an option to have children that are placed with them covered by their military medical program even before the adoption is finalized. You should apply to the Secretary of your branch of the service for the child to be a "Secretary Designee." If you have questions about this process, contact your commanding officer or The National Military Family Association at: (703) 931-6632.

Under the military’s Program for Persons with Disabilities, military parents may be eligible to receive up to $1,000 a month for disabled or special needs adopted children. The military also has a program called the Exceptional Family Member Program that will ensure that adoptive parents of special needs children are assigned to bases or duty stations that can meet the needs of the child.

         ~Adoption Tax Credit (contact your local IRS office): applies to domestic and international adoptions, but the procedure is not the same. Credit for expenses for international adoptions can be claimed only after finalization; for domestic adoptions, the credit can be applied even if the adoption does not go through.

The full credit can be taken for domestic special needs adoption even when the qualifying expenses don't reach that limit.
The credit of $12,150 is per child, not per year, so even if you claim expenses paid out over more than one year for one adoption, the total credit amount remains $12,150.

Once the primary concern of financing an adoption is addressed, it seems much feasible (to me, upon doing this research) to adopt than originally thought. Add to the difficulty factor, the concept of children awaiting adoption who have medical complexities... seems everyone, when "choosing" a child, would much rather select a healthy baby... and an older special needs child? That just puts them on the road to being purely "un-adoptable."

Again, from

Special Needs Adoption: The term is supposed to refer to conditions or characteristics that make a child difficult to place by the state adoption unit or an adoption agency, some of which have nothing to do with the health or temperament of the child. It has also, however, come to be used alternately with "hard to place," now widely misunderstood. Most agencies consider children and infants who are black or biracial to be children with special needs.

Handicaps: Children with special needs may suffer permanent or temporary disabilities, for example, cerebral palsy or a club foot. If the birthmother was a drug or alcohol abuser, her child may have been affected in utero from drug or alcohol exposure. A baby or child born to a mother with aids and who tests HIV positive at birth is definitely considered a child with special needs.

But the label "special needs" also carries a benefit that may be the reason for the silence of the minority and multiethnic community: "special needs" adoptions are not only usually free but often parents also receive payments from the ADOPTION ASSISTANCE PROGRAM (subsidies), as well as MEDICAID for the child, and other benefits.

For demographic and other reasons, and despite 20 years of active efforts to recruit minority adoptive applicants, there are apparently still not enough black families interested in or aware of the need for families of many black and biracial children. As a result, many remain in foster homes until they "age out" in adulthood. Some social workers have strongly suggested that adoptive recruitment efforts in black communities have been woefully inadequate and hypothesize that greater numbers of black families would be interested in adoption if they had information on the need and the children. Other black social workers say the problem is not recruitment efforts, the race of staff or inappropriate requirements.

Transracial Adoption: is a hotly disputed topic in the field of social work today, and some families have sued agencies for violating their civil rights by refusing to allow them to adopt across racial or nationality lines.

Families Who Adopt Children with Special Needs: adopters of children with special needs place a greater emphasis on flexibility, patience and motivation to adopt, while those families who adopted healthy white infants greatly stressed the importance of their spousal relationship; a love of children and the desire for parenthood as their main reasons for wanting to adopt.

Families who adopt children with special needs are frequently older, more educated and married longer than the infant adopters. Many agencies have an upper age limit of about age 45 for infant adopters, but the age limit is relaxed considerably for special needs adopters.

Many families who adopt children with special needs already have children, and this experience is seen as a plus by numerous agencies. In contrast, a large number of adoption agencies who work with infant adoptions restrict their applications to childless couples or couples with only one child. Agency practices probably contributed greatly to this difference.

Single people are usually allowed to apply to adopt American children with special needs, whereas they are often banned from adopting infants. Many singles have successfully adopted and raised children with special needs; others resent being offered only a child whose needs are complex, believing that a single person would have a harder time caring for a child with serious problems than caring for a healthy infant.

In the United States alone, there are currently an estimated 150,000 special needs children awaiting adoption... what an astronomical number, right? Thankfully, The Adoption and Safe Families Act of 1997 (P.L. 105-89) has focused more attention on finding homes for children with special needs and making sure they receive the post-adoption services they need. (a huge thank you to then President Bill Clinton!)

Please consider adoption, bee educated on your options. And those parents who have provided homes to our little "bees" with hydranencephaly: you are amazing & THANK YOU for providing the best quality of life possible to a child that the world may have given up on if it hadn't been for you!! 

Saturday, November 19, 2011

Flashback Friday: Giving Thanks

Thanksgiving is upon us, a time to celebrate all the amazing things in your life that you are thankful for... people, experiences, lessons learned. Every day is an adventure as a parent to a child with hydranencephaly, or any extra special need or medically complex situation for that matter. The following post is from my original blog, Small Portion of a Life's Journey... I likely shared it other places as well, since it is one of my favorites.

Ten Reasons to Give Thanks for Your Child With Special Needs
By Terri Mauro, Guide

As if you need a reason! Parents of children with special needs know more than most thatevery child is a gift worthy of thanks, every one, the ones who thrive and the ones who strive, whether they become our legacy or we become theirs. But on those days when there doesn't seem much to be thankful for, or others are suggesting that your child must be just a burden, or well-meaning charities suggest giving thanks for healthy kids, check this list for a smile and a little inspiration.

1. You never have to worry about worrying over nothing.Let other parents obsess over the frivolous and the shallow. Your child will make sure you always have something worthy to worry about.

2. Developmental delays = more years of hugs, kisses, and little-kid sweetness.My 13-year-old still wants to sit in my lap, give me hugs, and tell me he loves me. What mom of a sullen teen doesn't secretly wish for the same?

3. Maybe someday, Ty Pennington will come build you a house.Hey, Extreme Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space.

4. Any little milestone is a cause to throw a party.Your child works hard for every step, sit-up and syllable, giving you lots to be excited about.

5. Every day is a learning experience.Some days it's a pop quiz, some days it's a crash course, but life with your child is always an education, for sure.

6. You have the privilege of putting several doctors' children through college.After paying for all those appointments, you may feel like a one-family scholarship foundation. Put your child's name on some letterhead and take pride.

7. You meet a better class of parent in waiting rooms and support groups.Your child frees you from having to hang out with those snotty parents on the playground, and gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.

8. You have an iron-clad escape excuse for any occasion.You'd love to stay at that boring party, crowded event, endless church service, but, you know, your child just can't tolerate it. (And if sometimes it's you who can't tolerate it -- who's to know?)

9. Coming up with new strategies every day keeps your brain sharp.They say doing crossword puzzles helps ward off Alzheimer's. Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection.

10. Your blessings will always be fully counted.Other parents may take the gifts that their children bring for granted. Not you. Not ever.

Friday, November 18, 2011

Bee Buzz: National Epilepsy Awareness Month

Yes, November is National Epilepsy Awareness Month. While it is sad that this is a condition that must be recognized... awareness is essential for individuals to understand and recognize the possibilities. Epilepsy, though it greatly affects those with hydranencephaly or other neurological conditions, does not discriminate and could happen to any one at any time.

I feel pretty optimistic (possibly a tad over-optimistic) yet very realistic, that I have a good grasp on what to expect as the mommy of a 'lil miracle man living with hydranencephaly! Ok, that said... let me also admit one crucial aspect that just scares the buh-jesus outta me for one reason or another... it's that scary (to me, anyways) "s" word = SEIZURES. Even now that we've delved in to the world of battling the seizure monster on a pretty regular basis, it still is very scary to me... every time that nasty monster visits.

Our Journey with the Seizure Monster:

Every chance I get, I am looking for signs of possible seizure activity in Brayden's days, or information on treating or understanding, or asking other parents with children that suffer from epileptic seizures just shy of a million and one questions in regards to their own personal experiences with seizures in their life. Regardless of the mounds of information I have found, nothing has settled my mind in the least bit... 

We thought, for a very short time in the first year, that Brayden was displaying some seizure-like activity. Of course, our neurologist at the times answer was to have him undergo an EEG. How they determined that a baby living with very little brain would register any electrical activities without the brain that generally feeds that electric activity, is just beyond me... but I'm not the doctor here. Needless to say, the tests came back inconclusive and Phenobarbitol for seizures was prescribed in the very earliest of months. Again, without really knowing for sure if these were even seizures!

The seemingly seizure-like activity was eye flittering or sometimes just spacing out and staring, his eyes would almost "float" off in their little sockets. It may or may not have been seizures, but I thought phenobarbitol was a miracle drug at the time. Brayden was about 4 months old when he started it, and he began to sleep normally and be alert when he was awake. That very well could have been just him growing out of the "sleep-all-day" baby phase. Regardless, 3 months later upon our introduction to our new neurologist... Brayden was now deemed anti-seizure med free after a difficult weaning off of the heavy narcotic that is Phenobarbitol. 

The eye flittering? Solved with glasses for the most part, and likely was just an issue of controlling his eye muscles while suffering from a very severe astigmatism, no that he can see better his vision has improved and the flittering is nearly nonexistent. The spacing out, he seems to have a stubborn streak, matched with some absence seizures which really weren't being controlled by the meds anyway... not sure where that stubborness comes from! And the best part, I didn't even realize how lethargic that phenobarbitol was making my 'lil man... it is a heavy narcotic, which is great if you need it, but hard-core on your body if you don't!

Anyways, as a silent member of a group for parents of children with brain injuries... the following message came through this morning. Although I have files and files of messages I want to research more in to the topics contained amidst them and share with you all here, this one takes precedence in the hopes that it can help someone else... or my own little man when the scary "s" word rears it's ugly head for sure one day. 

Here's the prevalent points of the message, the original is extremely long so I only included those portions directly related to epilepsy in those with neurological conditions (click the title to view the full article in detail)... but more than worth the read if you're interested in various seizure treatments aside from pharmaceuticals or if other options like the ketogenic diet is not feasible for your little one. So, enjoy:

Stopping epileptic seizures using omega-3, vitamin E, diet, and more
By Roman Bystrianyk, 

According to the website “There is a fine balance in the brain between factors that begin electrical activity and factors that restrict it, and there are also systems that limit the spread of electrical activity. During a seizure, these limits break down, and abnormal electrical discharges can occur and spread to whole groups of neighboring cells at once. This linkage of electrical discharges creates a "storm" of electrical activity in the brain. This is a seizure. When a person has had at least two of these seizures, that's called epilepsy.” 

They also note that essentially many times the cause was unknown: “The reasons why epilepsy begins are different for people of different ages. But what's true for every age is that the cause is unknown for about half of everyone with epilepsy. Children may be born with a defect in the structure of their brain, or they may suffer a head injury or infection that causes their epilepsy. Severe head injury is the most common known cause in young adults. In middle age, strokes, tumors, and injuries are more frequent. In people over 65, stroke is the most common known cause, followed by degenerative conditions such as Alzheimer's disease.” 

According to the website that apart from the Ketogenic diet there wasn’t much that anyone could do to prevent seizures. I decided to take a trip to a local medical library to start my own research to see what I could come up with. I spent quite a few hours the first night searching and sifting through studies from a large number of medical journals. I did that over a number of weeks and accumulated a large number of studies that provided some amazing information. 

Omega-3 Fatty Acids One of the first studies I discovered was from the journal Epilepsia (1). The authors described that omega-3 fatty acids (or n-3 PUFAs) are essential for normal brain development and that a deficiency in these fatty acids can “contribute to the emergence of neurologic dysfunctions”. With respect to epilepsy, “recent studies in animal models have shown that n-3 PUFAs can raise the threshold of epileptic seizures.” 

Based on this knowledge the study authors provided a spread of 65% n-3 PUFAs (46% DHA, 18% EPA, 1% alpha-linolenic acid) plus 100 IU of vitamin E to 5 patients with severe seizure disorders. The spread (about 5 grams) was eaten at breakfast by 5 patients each day for 6 months. Although this was a small study, the results were nothing short of dramatic. The frequency of grand mal seizures (grand mal seizures are characterized by sudden loss of consciousness followed by violent full-body convulsions lasting several minutes) before the omega-3 diet and after were as follows: 

Patient 1 – Grand mal seizures before were 2-3 per week and after zero.
Patient 2 – Grand mal seizures before were 6-8 per week and after zero.
Patient 3 – Grand mal seizures before were 1-2 per week and after 1 per month.
Patient 4 – Grand mal seizures before were 1-2 per week and after zero.
Patient 5 – Grand mal seizures before were 14 per week and after 3 per week. 

The authors conclude in their study that, “All five [epileptic] patients exhibited substantial improvement and alleviation in frequency and strength of both GM [Grand mal] and PM [Petit mal] seizures. No adverse affects were noticed in any of them. Our study shows that n-3 PUFAs [omega-3 polyunsaturated fatty acids] can alleviate symptoms of human epilepsy.” 

In another journal, Seizure (2), two authors discussed epilepsy and sudden unexpected death in epilepsy or SUDEP that claims the lives of approximately 500 people each year in the UK. 

Although epidemiological studies indicate that 70% to 80% of people who develop epilepsy eventually go into remission there are those that continue to have seizures. The authors note the importance of omega-3 fatty acids in brain health. Key omega-3 fatty acids that are found in large amounts in fish are eicosapentaeonic acid (EPA) and docosahexaenoic acid (DHA). 

“Nutrition is likely to be one of these factors [contributing to seizures] and, in particular, deficiency in omega-3 fatty acids might be an important factor. Nutritional studies suggest that the Western diet is deficient in omega-3 fatty acids, which is an essential nutrient. Hence people with epilepsy in the UK , like those in the general population are likely to be deficient in omega-3 fatty acids. Omega-3 fatty acids have important roles in determining the structural and functional properties of neuronal membranes, affecting membrane functions such as electrical signaling, receptor sensitivity, and neurotransmitter release.” 

Vitamin E Vitamin E (or α–tocopherol / alpha-tocopherol) prevents the damaging effects of oxidation in brain tissues. Free radical scavengers, such as vitamin E, have been implicated in prolonged seizure activity. Vitamin E is a natural nutrient that works to stabilize the membranes of cells and has no known toxic effects. 

Early animal studies, published in the Annals of Internal Medicine (3), found that rats and mice that were exposed to 100% oxygen had seizures. However, the authors found that they could prevent the seizures if they administered vitamin E before the experiment. “Seizures occurred in 100% of the vitamin E deficient rats and in 50% of those fed a normal diet, but none developed in rats fed a diet containing an α–tocopherol supplement.” 

A study published in Canadian Journal of Neurological Sciences (5), where the author examined 100 children that had grand mal seizures versus 100 healthy children. The author found that those with the seizures had a much lower blood level of vitamin E (632 μg/dl [micrograms per deciliter) than those that did not have seizures (822 μg/dl). Here the author concluded that, “supplements of α–tocopherol might improve seizure control in such patients.” 

Vitamin B1 Thiamine, also known as vitamin B1, is essential for the functioning of the heart, muscles, and nervous system. A deficiency of thiamine can cause weakness, fatigue, psychosis, and nerve damage. There is no known toxicity associated with thiamine and studies have documented a relationship between thiamine deficiency and epilepsy. At the neurotransmitter level, thiamine deficiency may be accompanied in a lowering in the concentrations of γ–aminobutyric acid (gamma aminobutyric acid) or GABA. GABA is a neurotransmitter that is inhibitory, that is, it helps quiet the brain. Low levels of GABA are also associated with epilepsy or seizure disorders. 

Thiamine deficiency appears to exist in 25-30% of epileptic patients. 

A study in the journal of European Neurology (6), examined 50 patients who were diagnosed with a vitamin B1 deficiency. Out of the 50 patients 16 of them had shown epileptic manifestations, where 11 of them had severe vitamin B1 deficiency. The patients were provided with thiamine supplements. In 10 of the patients epileptic seizures were completely “abolished”.  

Another study in Epilepsy Research (7) involved 72 adult epileptic patients receiving a supplement of 50 mg of thiamine and 5 mg of folic acid. The 6 month, double-blind, placebo-controlled study measured the improvement in verbal and non-verbal IQ. At the end of the study the authors found there was an improvement in verbal and non-verbal IQ scores as well as in other neuropsychological functions. The authors conclude that, “the search for thiamine deficiency should not be neglected in chronic epileptics; empirically – if thiamine assessment is not available – we suggest 50 mg of thiamine supplementation daily for 1-3 months in chronic epileptics to prevent organic cerebral damage.” 

Vitamin B6 Vitamin B6, also know as pyridoxine, is needed for protein metabolism, red blood cell metabolism, and proper functioning of the nervous and immune systems. Vitamin B6 is also involved in forming GABA, which mentioned before is a major inhibitory neurotransmitter in the brain. Impaired creation of GABA can lead to seizures. 

Vitamin B6 deficiency has been known to produce neuritis (nerve inflammation) , dermatitis, anemia, and convulsions in infants. A report in the journal Epilepsy Research (8), discusses the case of an 8-day-old boy that had developed seizures. A variety of antiepileptic medications that were tried, such as diazepam and phenobarbital, did not block the seizures. An injection of 80 mg of vitamin B6 did “abolish the seizure immediately.” In subsequent weeks the child got 40 mg of vitamin B6 daily and “several EEGs were normal and no further convulsions were observed.” Analysis showed that the boy’s GABA levels were only at 13 pmol/ml (picomoles per milliliter) before the vitamin B6 and after had increased to 124 pmol/ml after vitamin B6 treatment. Children without any neurologic disease have a GABA level at 174 pmol/ml. 

In the journal Pediatrics (9) several cases of children with seizures are discussed. The first case was of a 4 year old girl that had seizures since she was 2 months old. Despite antiseizure medications she still had daily seizures. She received 50 mg of vitamin B6 twice a day and within 24 hours she was seizure free. After a month her legal guardians stopped the vitamin treatment on their own and her seizures started again within 2 days. After restarting the vitamin B6 she again became seizure free. 

The second case was of a boy who had been normal until 19 months old when he started having seizures. Despite antiseizure treatment he had between 2 to 6 seizures per day. He was given 100 mg of vitamin B6 intravenously followed by 100 mg of vitamin B6 orally by mouth and the seizures suddenly stopped. “The pyridoxine was stopped; 1 week later seizures recurred. The EEG showed runs of central spikes and sharp slow waves. Pyridoxine was restarted. A subsequent EEG was normal.” Despite the boy being seizure free for 3 months the parents stopped the treatment believing it was “dangerous”. Within 3 days he started to have 5 to 10 seizures per day. Vitamin B6 was restarted and again the seizures completely stopped. 

A third case of a 4-month-old boy showed similar results. Despite large amounts of antiseizure medications his seizures continued. He was given 100 mg of vitamin B6 and “seizures stopped in less than 5 minutes”. Two years later he has not had any further seizures and is receiving 50 mg of vitamin B6 twice daily. The authors conclude that, “the recommendations for pyridoxine treatment should be extended to include all children with seizure disorders with onset at any age who are poorly responsive to medical therapy. The upper limit to the age of onset of pyridoxine-dependen t seizures is unknown; no one has studied this question.” 

Selenium Selenium is a structural component of and a co-factor for the antioxidant glutathione peroxidase. Glutathione peroxidase is part of the defense mechanism of the body against oxidation. If there were selenium depletion this would lower glutathione levels, which would cause a higher susceptibility of the delicate fats that are part of cell membranes causing membrane and brain cell damage. The failure of protection against oxidative stress due to selenium depletion increases the oxidative stress on important firing neurons in the brain. 

A study in the journal Neuropediatrics (10) discusses the cases of 2 children with severe seizures. The first patient has suffered from seizures from 4 days old until the visit to the study authors’ hospital at 5 1/2 months. The second patient had seizures from 11 months until the visit to the hospital at 3 years and 9 months old. 

The first patient showed an abnormal EEG pattern with “large slow activities mixed with smaller amplitude polyspikes and marked asymmetry.” The child was started on oral selenium supplements and within two weeks, “the daily number of seizures was reduced by 75% while the duration of seizures regressed dramatically from more than 30 minutes duration to less than 5 minutes. The focal sharp waves and spike-wave activity on the EEG recordings disappeared.” The authors note that the patient’s condition may have been aggravated by the low selenium content of the infant formula he was using. 

The second patient had recurrent petite mal seizures that “recurred and became uncontrollable despite benzodiazepine drips or high doses of dexamethasone.” He was started on an oral supplementation of selenium rich lactobacillus (a probiotic bacteria) referred to as “Se-Lb”. After two weeks on this supplement his glutathione levels became nearly normal and “petit mal status and mycolonic seizures together with generalized spike-wave activity in the EEG stopped completely.” After selenium treatment was stopped his glutathione levels dropped and seizures started again. Selenium treatment was restarted which resulted in “marked clinical improvement with virtually complete cessation of myoclonic seizures and petit mal.” 

The authors conclude that, “we think that children with epilepsy who develop intractable seizures should be screened for the possibility of selenium deficiency as a trigger of neuronal membrane damage and instability. Inborn errors of selenium uptake or metabolism could be involved in the pathogenesis of intractable epilepsy, Alpers disease (a progressive degenerative disease of the central nervous system that occurs in infants and children) or progressive neuronal degeneration of childhood.” 

Carnosine Carnosine (β-alanyl-L-histidin e) is a dipeptide, which is a combination of two amino acids of alanine and histidine. Carnosine is an antioxidant that stabilizes cellular membranes protecting them from damage by free radicals and is found in large amounts in the muscle and brain of mammals. Carnosine also appears to help to modulate zinc and copper into neuronal cells near GABA receptor sites potentially helping with the epileptic inhibition effect of GABA. Carnosine appears to be non-toxic and studies involving carnosine have shown no side effects. 

A study in the journal Neuroscience (11) examined the effects of carnosine on seizures in rats. In that study the authors found that carnosine decreased seizure duration as well as the amount of time between seizures. “Carnosine could easily penetrate across the BBB [Blood Brain Barrier] and has few side effects. Therefore, it is likely that carnosine might be a new potential anticonvulsant drug for clinical therapy of human complex partial epilepsy in the future.” 

Diet During a previous study that analyzed the effect of an oligoantigenic diet to treat migraine and hyperactive behavior in children the authors noted those children with epilepsy often had their seizures stop during the study. An oligoantigenic is a “few foods” diet in an attempt to eliminate foods that might be causing a reaction in a person. 

A study based on this observation in Journal of Pediatrics (13) examined the role of diet in 63 children with epilepsy. All the patients were put on a restricted diet for 4 weeks. Normal daily helpings of excluded foods were reintroduced one at a time at the rate of one per week. If symptoms reoccurred that had disappeared in the initial stages of the diet, then it was eliminated, otherwise it was incorporated back into the diet. Although none of the 18 patients with epilepsy alone improved, 40 of the 45 patients with migraine and epilepsy did improve in one or more symptoms. All patients, except for one, reacted to at least two foods. 

“During follow-up of 7 months to 3 years on diet, 25 of these patients achieved complete control of seizures, four other had seizures only with upper respiratory tract infections, and seven had seizures less than half as frequently as formerly; in all these patients other symptoms also improved. In four other patients, other symptoms improved but seizures did not.” Also, “19 of the 25 patients whose seizures stopped have phased out anticonvulsant therapy, and five are still doing so.” 

A large number of foods caused reactions in the different patients. The foods that caused the most seizures and symptoms were: cow milk (seizures: 37%, other symptoms: 63%), cow cheese (seizures: 36%, other symptoms: 55%), citrus fruits (seizures: 29%, other symptoms: 50%), wheat (seizures: 29%, other symptoms: 49%), and food additives (seizures: 25%, other symptoms: 58%). In 16 of the patients EEG was repeated at least 1 month after the study started. 

“There was no change in five of six patients who previously had had multifocal discharges, whereas normalization of the EEG occurred in one. The EEG improved markedly in there of six patients whose previous EEGs had displayed unilateral epileptic activity. The EEG of one of the two with moderate abnormalities became normal.” 

NutraSweet or Aspartame The artificial sweetener aspartame or NutraSweet was introduced to the market in July 1983 and has become pervasive in the food supply. Although some studies have shown it to be safe, large numbers of adverse reactions are still reported. According to a report in 1984, two-thirds of reactions involve neurologic or behavioral symptoms, particularly headaches. 

A study in Environmental Health Perspectives (15) also examined the effects of aspartame on the brain. The authors note that “doses of aspartame which are within the range actually consumed by some people can affect the chemical composition of the brain, and may thereby contribute to particular CNS [Central Nervous System] side effects, including headaches, inappropriate behavior responses, and seizures.” 

The authors performed a study on rats to determine the effects that aspartame might have on the human brain. They pretreated the animals with various doses of aspartame 1 hour before exposing them to a seizure inducing treatment. At 1000 mg/kg [milligrams per kilogram] 78% of the animals had seizures, at 2000 mg/kg 100% of the animals had seizures. Only 50% of the animals that were pretreated with water had seizures. The authors note that, “it is possible that doses of the sweetener [aspartame] that cause a sufficient increase in brain phenylalanine might increase seizure frequency among susceptible humans, or might allow seizures to occur in people who are vulnerable but without prior episodes.” 

Pesticides Pesticides include various agents devised to control a wide number of pests. A 1997 report by the Environmental Protection Agency (EPA) estimates annual usage of 975 million pounds of pesticide active ingredients. Because the calorie and fluid intake of children are much higher relative to body weight than adults, small amounts of pesticides considered safe for adults could result in unsafe exposures in children. 

A study in Pediatric Clinics of North America (16) discusses the effects of various pesticides on children. Cholinesterase- inhibiting insecticides are the most commonly used pesticides. “Central nervous system toxic signs and symptoms include headache; nausea and vomiting; dizziness; respiratory depression; mental status changes, including coma; and seizures.” 

Several studies have provided evidence that children display different symptoms than adults. “In these studies, children were more likely to present with mental status changes, including coma. They were also more likely to present initially with seizures.” 

Organophosphates produce toxicity by inhibition of the cholinesterase enzyme. The result is an accumulation of the neurotransmitter acetylcholine. This causes a prolonged firing of neurons in the brain. There is a wide range of toxicity for organophosphates and many of the more toxic ones are absorbed right through the skin. “Organophosphates have been thought for many years to be associated with subtle, long-term neurologic effects years after acute and sub acute exposure. Individual case reports first documented patients with reported headaches, blurred vision, memory, depression, irritability, and problems with concentration.” 

A case history of a child in the journal Pediatric Emergency Care (17) discusses organophosphates. “Organophosphate poisoning continues to be a relatively common occurrence, especially in rural areas of the United States. Insecticides fall into four classes: organophosphates, carbamates, organochlorines, and pyrethroids. All compounds can precipitate seizures except for carbamates, which have poor central nervous system (CNS) penetration.” Organically grown foods reduce the amount of pesticides on food and in the environment. 

Wrap Up 
~Omega-3 fatty acids are extremely important in a properly working brain. These omega-3 fatty acids through EPA and DHA supplementation appear to have anti-epileptic effects in animal studies and in a dramatic but small clinical trial. 
~Vitamin E protects the membranes of brain cells dramatically reversing seizures. 
~The B vitamins (B1 and B6) are important in the formation of GABA, a brain “quieting” neurotransmitter, also with dramatic results. 
~Selenium is important in the formation of glutathione, which also helps protect the brain from oxidation. 
~Carnosine also plays a role in the GABA story. 
~A diet free of certain items (often dairy, wheat, food additives, and citrus) is important in controlling seizures. 
~Aspartame causes neurologic problems in certain individuals and may be a contributing factor in seizures. 
~Pesticides, which are pervasive in our environment and in our bodies, are also a piece of the puzzle. 
~Other factors, such as lead, mercury from the environment and vaccines, quercetin (a bioflavinoid) , vitamin C, and more also play a role in the health of the human brain and can also have an effect on seizures. 

Combining all the mentioned approaches into a comprehensive protocol: omega-3, vitamin E, vitamin B1, vitamin B6, selenium, carnosine, proper diet, avoidance of aspartame, pesticides, and more could only produce spectacular results.