What is Seen and Unseen.

>> Sunday, December 27, 2015

This last week has been rough, not for Bug. Bug has been doing well. Averaging less than 2 seizures a day still, even with getting sick, this is great! He is smiling and engaged, following simple directions and he is playful. Playful in a way he was when he was very young. He has that: Oh yea? Look about him.

I will ask him to sit down and he will give me a wry little smile as if to say: Make me. If I force him to sit down so I can change him, it's a battle. If I smile back and tease him, he sits down. Tell me, is he yanking my chain or what?

So, what has been the rough part? Watching my father struggle with his...whatever it is. We know what is there: two masses where his stomach and his upper intestine meet and 'cancer' cells in his lymph nodes. They found the one mass a month ago and biopsied it. It was benign. They did NOT operate to take it out. Why? It 'seemed' to be responding to antibiotics. Seemed to, until last week that is. Then, the symptoms started up again and he went back to the Doctor. The week before Christmas. Oy. We know what that means: No action unless absolutely required. Sadly, we have seen that first hand with injuries before Christmas. It's as if the world stops and the misery continues unaided. It says: here have some pills to mask the pain, sorry if it makes you puke, take some more of these pills to help counteract the others. And sorry, neither one of them will remove the problem causing the symptoms, we will address that in a couple of weeks...have a good Christmas.

But, this time, they found another mass. He now has two. Two tumors. Having an additional intrusion in his stomach makes eating, sleeping, walking, and sitting unpleasant. Difficult. This makes life mostly miserable. Instead of staying home, the Doctor told him: Why NOT travel and spend time with your family? And he did. He toughed it out and made the airplane ride 1300 miles with one layover. He's my hero.

There have been joys, and there has been watching Dad be silently miserable for days. After spending 13 years watching our silent little boy go about his life, I have learned a thing or two about body language and a thing or two about what can be happening based on that body language. Dad's body language says: I hate life. But his mind and his mouth say: I'm ok, sorry to be a bother. As if. I re-assure him that it's not a bother, in any way, to love him and to help him. I get him drinks, ask him if he needs anything and he responds with the same thing: Don't go out of your way. I told him that it's OK for him to take it easy, to be miserable for a bit and to need help. I told him that we will be sure to take care of that causing all of his pain and misery as soon as we can, and until that can happen, he gets special treatment. I watch him hide so his pain is not our pain. His misery is not intruding on our Christmas. All I see is my Dad, being my Dad and needing to know he is a big part of our family and we are always here for him.

And so I asked him:

Would you ever consider Medical Marijuana?

What I expected to hear, I did not hear. I heard instead: Yes, I would.

I went into the bathroom and cried. I cried because he really would benefit greatly with just this ONE medicine. Medical Grade Cannabis would help with EVERYTHING he has going on. And that is FACT. NO ONE disputes that Medical Cannabis helps with nausea, would help increase his appetite, and helps shrink certain tumors. With this ONE medicine he could have a greatly improved quality of life and he could enjoy his grandchildren at Christmas. The toddlers who shriek with delight at the lights on the houses, the presents under the tree and taking pictures of Grandpa. He smiles for her, for his little granddaughter with the glowing red hair, who says: Smile! He sits on the floor and plays trains with his little grandson, while they both make train sounds...whoot whoot...chugga, chugga, chugga. I watch him pause, to gather his strength, which is lessened because he can't eat well, somedays he can't eat anything because of the pain and nausea. But even on those days he still smiles with his Grandchildren.

I have watched this play out every day since he came to stay with us the day before Christmas. He starts his day with Zofran and Hydrocodone, if he forgets the Zofran, he will throw up the Hydrocodone. Then he won't want to eat and he won't want to 'bother' anyone. All I can see is that he could have had Cannabis a month ago and been in a different place. Proven fact he would have been doing better with at least the pain and the eating even if it hadn't shrunk the tumor.

I sat in the bathroom and cried, as I have so many times the last two years. I have watched parent's bury their children, I have attended funerals of parents that have died too young, and I have watched 'broken' people be made whole.  I thought: it's my proximity to this reality of life among death, that makes Cannabis such an easy treatment option for me. I am in the trenches, I am talking to people wanting to die, and speaking with them months later living life after adding Cannabis to their treatment plan. It's this caring for the people that most would rather overlook that makes it so easy for me to see that there is NO decision here. It's a simple thing: if it helps, let it help, let these people suffer no longer. Those children you are worried about, the ones that want to hide from their lives in the drugs they ingest, they will NOT be made worse, but my Dad will be able to enjoy his Grandchildren.  You are telling me, and the rest of the world that MY Father, the man who fought for his country, who worked 3 jobs for his family and was a 44 year federal employee is not as important as your teenage drug user? Something is very wrong with this reasoning.

The decision to be made is not about drug use, it's about how best to ensure that we are helping those people that DESERVE help, those people who ARE contributing members of society and are dying while you cry tears for what MIGHT happen with NO proof that it WILL happen. Are you ignoring what is happening now as you sit far away and pass judgement on whose life is worth saving and who should die in pain? This, is all see. Because I have put myself in the position to see it, I open myself up to the pain of helping those that need help. And so, there is no decision for me. You make sure men and women like my Dad get the best medicine for what ails them. What I have seen, makes this an easy decision. Maybe that's the difference: what I choose to see.

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The upheaval of Christmas

>> Sunday, December 20, 2015


14 seizures in 18 days...not a bad average. Last night threw it off a little, 2 in 3 hours. :( But a restful night and he is getting sick, so we would expect at least 10. Holding my breath for the rest of the day.

Working on the KBG Foundation is very daunting and yet, has the potential to be very rewarding for a number of people. 60+ in fact.

I downloaded the abstracts for all 43 PubMed research papers and as I was reading through them, I got sad, and happy, and sad again and slipped into the: remember when he was typical?

This holiday season has been exceptionally brutal on that front. Not sure why. Maybe it started with a video Glenn found of the kids opening and playing with the Christmas presents and each other. I watched Bug tugging on Taylor and her squealing with delight. He would tickle her and let her get away, only to go grab her again. She loved it. We loved it. We were that happy, normal family. One boy, one girl and clueless.

Maybe it started with me listening to Ava and Aiden getting better at speaking, at swearing and being adorable and me...always looking for what may signal something is amiss.

It's the bane of having an oldest child with a different, more complex, medical need. Especially one that, seemingly sprang from nowhere. One year he was eating his birthday cake with a fork, very carefully, with little to no mess and then next...he wouldn't even look at the cake. Or his presents. Or his sister. Or me.

Every Christmas, I torture myself and think that maybe this is year he WILL open his presents again. Maybe this is the year he will hand people their own presents with a smile. I think MAYBE this is the year for....a Christmas miracle.

And then Christmas morning arrives, the littles gleefully jump up and down at their treasured presents (for hopefully at least a week or two) and then I go get dressed and cry. Yep, I admit it. Every Christmas since he was 5. I will try not to that this Christmas, I will try to keep my eyes on the joy of the children, the family, and Bug. I will try. I guess, that would be my Christmas miracle, the only one it seems I will get a shot at for the next few years.

Don't get me wrong, I love watching all of my children enjoying the magic of Christmas, and in the moment, it is all about their excitement, their happiness at watching people open the gifts they picked out for them, not just what they received. There are a lot of laughs. It's just that ever-constant ache at missing my boy still, the ache I haven't ever truly gotten over it seems.

video

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Call me a drip under pressure.

>> Wednesday, December 2, 2015

Christmas 2015
The last few days have been relatively quiet on the seizure front. We have, preemptively added back the .5 clonazepam at night to help with the nocturnal seizures. I hated doing it but he has gone seizure free a day or two with it so...trade offs.

We discontinued the Vyvanse. He was on it for 2 months and the last month he wasn't very happy. He was extremely quiet and not very engaged. 2 days off it and he is back to following direction, humming, kissing and falling asleep in my arms. We will see what happens as the week progresses but if we can keep him at this baseline, we will stay stable with changes until I can get him into a Smarty McSmarterson to help with the folate thing and the KBG.

I awoke this morning, after 4 hours of sleep, to Ava's feet on my throat and began to think about all that has happened the last 10 years and equate it to my current position at the Epilepsy Association of Utah and the KBG Foundation. Then I thought: how am I NOT considered an expert in the personal management of epilepsy?

( I have to throw this in there: Glenn's Dad used to love to ask people if they knew the definition of an expert. They would flounder a bit and he would say: an ex is a has-been and spurt is a drip under pressure. I always think of that when I use the term expert...I use it with respect and very carefully so as not incur his posthumous mockery.)

So I went through the numbers, as she was snoring and kicking her feet at my head, and they are pretty interesting.

7 month old Bug
Before Bug had his first seizure, my billable hourly rate was $175.00. I went from a Technology Executive to a Caregiver and Stay-at-home Mom. Somehow, that change of title devalued me and my time became everyone else's time. For what little comfort I found in it, I was able to advocate for him to get some answers, it took a little longer because I too had devalued myself and let someone else tell me what was best for him. Until I realized that NO ONE knows him, or Taylor, Ava and Aiden like I do. We wallowed a bit with no direction, trusting those we considered experts. But it was only when we told his medical team what WE wanted to see, what WE wanted to try, what tests WE wanted performed, that we found any answers.

When I attend meetings now, they are not multi-million dollar system integration meetings. I don't have a 7 figure budget to work with, and I am not being paid 6 figures. I am, usually, one of the ONLY unpaid people in the room. My motivation is true and focused: I am an Epilepsy Advocate. An unpaid but very professional person with no ego, no kingdom to build except that which raises awareness and services for people with epilepsy.

Aside from my business experience, and being a right pain in the ass at getting care for my son, what makes me an expert?

Let's use averages and tally a few things:

Bug has been seizing for over 10 years.
3,689 days to be exact.
In that time he has gone 14 weeks without seizing (not all at once, his first stretch was 60 days until his third seizure and since then he has not gone more than 3 weeks)
So let's take 98 days off that number.
3,591 days
He has had up to 20 definable seizures in one day and as little as 1. Let's be cautious and say he averages 2 clinical seizures a day.
7,182 seizures (at least)

I have personally witnessed and comforted him at least 7,182 times while he seizes. Varying times and length. Some with cognitive decline and others with a smile as soon as he was done.

7,182 seizures AT LEAST

At Disney VOD
So why, when I am in the room with someone that hasn't seen one, let alone one that day, do they tell me that I am unyielding? Why, when the EAU has been the only group to compromise to get it done are we treated like I am so difficult to work with?  Folks, I have seen more seizures in one week than most of you will see your entire life and now...because you are trying to devalue me and my experience again, I will remind you every time we meet that I am the expert in the room. If that pisses you off, that is your ego and not mine because I have been strategic in compromise to bring all parties to the table and to get a seizure plan that we can all agree upon. Even after you threw out completely, the one we brought that was approved by the Epilepsy Foundation of America and their Doctor/Educator Committee. In your arrogance, you presume to know more than EVERYONE active in the epilepsy community? That is the definition of egocentric, not me asking you provide the same support to students with epilepsy as you do students with Diabetes or Allergies. There is no ego in reminding you about how the Health Care Plan works or ADA compliance.

No, I am not getting paid to be there...and it's a good thing...you couldn't afford me.

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The things people say

>> Sunday, November 15, 2015

Get ready to be insulted, angry and sad. If you aren't, go away and come back when you grow a heart.

First, let's cover the Bugster: Bug is doing well. He is almost having NO seizures during the waking hours still. In the last week we have seen less than 3 total during the day. But the night is back to being the enemy. He is happy, spinning and smiling and jumping. No idea what the jumping is about but I just hope he doesn't break a foot. He IS doing something he hasn't done much of since he was two: climbing.

He will climb on to the table, the desk, the kitchen counter and just sit there. While it's cute, it can also be dangerous should he seize. Tonight, he climbed on the kitchen counter and unscrewed a light bulb. Huh? Not sure why, maybe it was too bright. For whatever reason, he is expanding his repertoire and I like it.

Also tonight, I was getting caught up on a meeting that I couldn't attend. For the last year, the EAU has been meeting with school, state, and government officials to work on the proper seizure protocol that must be implemented statewide in all schools. This is a big deal and critical to the safety of students. Right now, response to ANY seizure by school staff is based on dangerous and reckless policies that have resulted in responses such as: Calling 911 with any seizure and doing nothing while the student seizes.  Or making all the students leave the classroom so they don't have to witness the seizure, because that could be traumatic. Instead they leave the seizing student on the floor, alone.  Or even administering untrained first aid and putting objects into the seizing students mouth. These discriminatory, dismissive and in some cases dangerous responses elicited a committee creation to address the safety issues. So, the Department of Health got the right people to the table to make these decisions and standardize the response to a seizure. Hooray! It seems, however, not all of us are keeping our eye on the health of the student having the seizure. Some of the things they are asking to be put on the form are baffling, unless you take into account that most of the people asking for the changes have never seen ONE seizure, let alone the thousands that the Association members present have seen. So, one would think that the people that are the most qualified are the people that have the most experience caring for children with seizures and would be considered the go-to experts. And who better than parents that live daily with the condition? But no, we are dismissed as, well....parents. We are not treated as part of the solution but people to manage away. They are projecting: let's just manage the people and not actually solve the problem. We have been dancing around bureaucratically for over a year with NOTHING to show for it. When we agree to move forward the next meeting, the bureaucratic approach throws it all out again. Frustration beyond frustration.

What set me off was this statement relayed to me:

You need to think about how the nurses feel. They are afraid, This is real fear about losing their license.

My GUT response: Are you effing kidding me? *WE* need to think about the NURSES? We shouldn't think about the student and the danger to their life? We should think about the people that have blamed others for the breakdown in the process, while they stifle the process? The EAU and the Department of Health have been the ones driving it forward! We should think about the people that haven't been to the last two meetings? The ONLY people we SHOULD be thinking about when we are in that room together are the students with epilepsy. Period. ALL ego and fear should be checked at the door, we should focus on facts and the compassion to help!

In the State of Utah, school Districts have the discretion to refuse, get that...REFUSE to administer any rescue medication (and in some they can refuse daily antiepileptic doctor-prescribed medication) for seizures. They can say: I know your doctor said he/she needs it, but...we disagree so good luck. A District can override a doctor. It appears 'first do no harm' applies to the doctor, not the school. A nurse can also override a doctor, a school principal, with NO medical training whatsoever, can override a doctor. Utah State Office of Risk Management has said: There is no reason why you can not administer or delegate the administration and not feel secure in doing so.

The nurses present said: We don't believe you. Check lawyers off of the 'allowed to override' list.

Our Executive Director left one meeting and said: "Wow, do I feel devalued. As a person with epilepsy, I am sad to know what they REALLY thought of me when I was in school".

It cut me to the core. We have students that have to stay home because they require medications that Districts are scared of. I call bullshit. Why? Because they have NO issue administering the Schedule 2 drug Ritalin (and its cohort of similar medications), while simultaneously saying our schedule 4 drug is scary. After they asked for and got a letter from the Director of Pediatric Neurology for Primary Children's Hospital stating that Versed is safe to administer, they still are telling legislators that it isn't. Where I come from, boys and girls, that's called fibbin'. We are being ignored and dismissed from every angle.  Even other epilepsy groups in Utah are backing the nurse's stance and calling our organization the problem. If you want us to be the problem, you will be waiting a long time. And, if I am, personally, crass or arrogant, then that's what YOU want me to be, because I am advocating for the student with epilepsy. Plain and simple. It's an ADA compliant condition and they have RIGHT to an education.

It's THIS simple: If you have a 504 or Health Care Plan that details the medication that should be delivered to the student, how and when it should be delivered, then do it. Parent's have gone through the Health Care Plan process to ensure their child is safe and according to FEDERAL law, you do NOT have the right to arbitrarily change it. We make accommodations for students with diabetes and allergies but we tell student with seizures they have to stay home.

Does that piss off anyone else or is it just me?

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Very aware.

>> Wednesday, November 11, 2015

The title is misleading. Bug is not very aware, although he is doing a lot better with focus and engagement, I mean that I am too aware of epilepsy.

Last night was horrible. 7 seizures before 12:30am. At 11:20 we gave him a clonazepam to see if we could calm it down. He had had 4 by that time and another 3 in the hour it took the meds to kick in and then at 1:00am he slept peacefully. I know this because he slept next to me for the next 8 hours. HE got 5 hours with no seizures and then 4 more before he woke all the way up and got his morning meds.

The daytime seizures are so few now. If he has 3 during the day it's a bad day, he usually has 0-1, it's the nighttime crap that needs to stop.

I called to get him an appointment to see a new Neurologist here, in Chicago, and left a message. Until we get an appointment, Glenn and I have decided to give him the clonazepam nightly to try to get him some relief.

This is a difficult decision for me. It took us so long to wean him from that medication and now to have to put him back on it at night...I know that a lot of people with nocturnal seizures take clonazepam at night. I should be OK with it because it IS helping him sleep without seizing but I'm not. We have to do it, and I know this, I do, but damn it all...

This morning, he is happy. Chirping, spinning and engaging. I can say: Hey! And he will turn and look at me and smile when I smile. That's huge for him. HUGE. We have been so largely ignored for the majority of his life it's really great to be back in his world. OUR world. It's good.

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The ADA's of epilepsy

>> Tuesday, October 27, 2015

This ADA world we live in is getting more depressing by the moment. The disparity, the horrific abuses, the apathy...all of this I have seen the last two days not to mention the atrocities of the last 10 years. I know there are wonderful people out there that see my son as a young man that needs patience and understanding and deserves compassion and acceptance. Then there are those that see him as a burden, as someone taking resources that they are paying taxes to maintain and is a waste of their money. I like to think that there are more of the former than the latter but I have been in this epilepsy world for a full decade as of two days ago and before that, the cognitive impairment world, I can tell you...epilepsy is different. It's treated differently. People with epilepsy are treated differently.

And yet:

It's an ADA compliant condition.
There is no greater chance of cognitive impairment than the general population.
Over 3 million people in the US live with active epilepsy and over 100 million know someone with epilepsy.
30 Million people KNOW what a seizure feels like. They have had at least one.

So why:

Does epilepsy research get less funding than contraception? Less than HIV/AIDS? We spend more money on sleep research than on epilepsy. (http://report.nih.gov/categorical_spending.aspx)

The plight of people with epilepsy is largely ignored. Is it because, in most cases, a cause for the seizures is never known? Maybe that's because we spend so little on research? Genetic epilepsies are being found nearly every month this year and the research funding for genetics is impressive. Obviously, if we really look...we will find some answers.

But why does the average, reasonable person, make such horrible comments about epilepsy?  Why is it funny? I can assure you finding Bug laying on the floor, blue, in full convulsion, is not funny. Yet some people will stand by and watch without trying to help. Some people will steal money from him, take his wallet (if he had one). Police will arrest him for being disorderly while coming around from a seizure and if he were a woman...he runs the risk of sexual assault. All of these things have happened just this year around the world. For those of you calling BS:

Liverpool News - Epileptic man 'robbed' during seizure in Kensington

Epileptic man arrested for DWI sues Dallas PD

Woman was sexually assaulted and had her iPod stolen as she suffered epileptic fit in public park

And then, there is this:

Former teacher pleads guilty in assault of autistic boy

The last one is very upsetting to me personally and I will, most likely, detail my thoughts on that particular type of depravity later. Professionally, I am disgusted by all of these negative stories I hear. And I hear a lot of them. We pretend to be so enlightened.  We are concerned about animals and the environment because we know more and are more civilized than generations before us. But those generations before us, while misinformed, thought that people in seizure were touched by God. Some thought of them as being 'enlightened' during a seizure, in a sense, some societies revered people with epilepsy. Others thought people with the 'falling sickness' were possessed of demons.

Candidly, I like the idea of a supernatural etiology a lot better than the reality. The reality is most people never know the cause of their seizures, and those with a comorbid condition rarely recognize, nor does the CDC record, their seizures as epileptic. So let's say it together: I have epilepsy. I have had more than one seizure. It's Ok. I promise, with all my sad stories, it will be OK. These negative stories, they have to be told. They have to be told so they don't happen again. WE have to make sure they don't happen again.

The definition of epilepsy changes over time but the community of people living with it don't. They are from every walk of life, every socioeconomic group and nationality.  There is no one group of people more predisposed to having epilepsy than another, nor a gender more prone. The fact is: we ALL have a seizure threshold, any one of can have a seizure at any given time, if the conditions are right. Some of us have a lower threshold and seize more often and for a variety of reasons.

The fact remains: if you have a seizure you may never have another or you may seize for the rest of your life but you will ALWAYS find people to support you. And you will always find people that will exploit or abuse you in their ignorance. You will have medical professionals that have no idea how to respond to you having a seizure. Not just because they have never seen one, but because they are not taught in depth about seizures and epilepsy. You read that right: there is NO chapter on epilepsy, and the many types of seizures, in any medical course not expressly dedicated to the treating of the condition. It is overlooked as being a specialist-only condition.

This confounds my common sense. As it should for anyone. If you have a 1 in 10 chance of having a seizure in your lifetime and a 1 in 26 chance of being diagnosed with epilepsy, why do we not teach about it everywhere? Why do we not spend as much time on it as we do diabetes in our health classes? I ask these questions because I believe in education. I believe that if you take the time to teach someone about a condition, it becomes more accepted. Crazy idea isn't it? The more you know, the more you accept what you know. And, also, what you don't know. You become...enlightened.

In Utah, the Epilepsy Association of Utah has a complimentary Get Seizure Smart! Class. Complimentary! There is no excuse for ignorance, and only a fool would remain ignorant. We have presented this 15-60 minute class (based on requirements and requests) to thousands of people and hopefully enlightened a few of those about epilepsy to help make acceptance happen. While I am thinking about it, you can now view it online: Seizure Smart.

Seizures are scary, but the Bugster is not scary. We accept seizures as normal for our family, even as much as we hate them, Bug is in our family and we accept and love him and all his smiles and seizures. Lately, there are more smiles than seizures and for that I am eternally grateful. It is that reason, his smiles, that I fight for all people with epilepsy. His smiles, that were gone for so long. His smiles, that medical professionals forgot he had and now, will never forget.


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Unspoken

>> Friday, October 23, 2015

Lunch, for Bug, is really just a continuation of breakfast and a gateway to a snack before dinner. He eats a lot. Today, he paused.

We were having nachos with chili...he's loved it since he was little; dip the cheesy chip into the chili and it's like a little edible scoop of goodness.

When he paused, I didn't think much of it so I went to get the next set of nachos. When I returned, he was in tears.

This does NOT happen often and I was taken aback. I grabbed his hand and he looked at me, still crying, not making a sound. I begged for him to tell me what it was that was making him cry, to motion to what it was...something to enable me to help him. There was nothing. He made no motions, no little nuance to hint at the problem. But he did not seize. He did NOT seize so I knew it couldn't have been too serious. Yet, I thought I was going to see him go into a seizure at any second.

At that moment, it takes a lot of deep breathing to hold it together and to be patient and wait it out. Everything about being his Mom says: Help him! But I did not SEE anything, I did not PERCEIVE anything. I had to wait. So I waited.

Slowly, his tears stopped, he got a drink and we continued eating. I can surmise that he bit into a chip and it poked him. That is pretty darn painful, but I will never know. Never.

That little incident led to another bigger one: I will be changing diapers for the rest of my life.

Ava really needs to potty train.

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Again with the weed talk...

>> Wednesday, October 21, 2015

Bug...is doing well. 5 seizures last night, but 2 the night before and 1 the night before that. The roller coaster is in full swing, but really, so much better than the 10 he was having. And the Diastat he needed weekly, sometimes daily...haven't used it since we left Utah. I will take this improvement and I am very pleased with it. I do NOT second guess my work with Charlee's Law. I DO NOT. Some people believe that they need more THC and that is up to them, I hope it helps if they are taking that chance. It doesn't help Bug and luckily we were still within federal law when he tried it, but it was NOT a coincidence that it was bad for him. Because the CBD has been so good for him. And to me, in my limited understanding, it would make sense. Bug needs to speed up his brain, not slow it down. He has slow alpha waves so slowing his brain: not a good thing. At least not in that very fundamental way. For him, the higher CBD strain he is taking is great. He smiles at me, he comes when I call him, he is making noises that are very speech-like. It's pretty darn great. And with his history of all hell breaking loose for no apparent reason...we are NOT changing anything at the moment. NOT ONE THING. He is stable. Let's leave it there for a while, shall we? So when people try the higher CBD strains and use it like it is any other medication, it makes me crazy. There is a sweet spot with cannabinoids. Yes, our bodies have a system that recognize it and use it VERY efficiently. But when that system is overloaded, it's not a good thing. So the titration has to be slow and steady. One must be patient to not overshoot that optimum area of feeding the system what it needs without overloading it. Too much is bad. Get it? It is NOT your normal AED, folks. Yet, when they miss that sweet spot, they say: it worked and then...and then...
THEY usually finish with: It stopped working. We need more THC. Sigh. 

Maybe, but maybe not. THC is a proven pro-convulsant. Don't just use the studies that support your position, use all of them. THC is a pro-convulsant. You have to be careful if you have a low seizure threshold. Depending on your type of epilepsy, THC can make it worse. As of this moment, we can not say the same about CBD. So, no, you, most likely, thought more was better and overshot the target. More, is just more in this case. It is NOT more effective. It did not stop working. The patient was overdosed with CBD. What they should do is stay at one dose for 2 to 4 weeks before upping to the next dose. Yes, that slowly. We saw that with the Bugster. And many people have. Even with the higher THC strains: titrate SLOWLY. For pain...different ball game. Entirely different. Same with Cancer. But whatever the condition, I believe cannabis deserves its day in court. It deserves to be tested, and used as a treatment if tests bear out a positive result. Quantifying the term 'positive' should be left to the patient and their medical practitioner. It DESERVES to be used as a tool for improving quality of life. You SHOULD NOT tell me: But it's addictive. So is Hydrocodone, and Morphine and we use those. The addiction argument is really and truly invalid when discussing cannabis AS A TREATMENT. Do not breathe recreational use on my argument. We are talking medicine not your right to get high. Different argument entirely. There is a committee meeting today. They are discussing medical marijuana. I smile, because I WILL NOT tune in to listen. I can't. I won't. I am raw. I am done being beat up and ignored for this one thing. This wonderful and marvelous thing but there is more to me and more to my little man than cannabis. I am looking at my little man, my little cannabis user, and I delete my Facebook post that I was composing. Not before I copied it though. I need to have it in the ether. Somewhere in cyberspace, I just need it. I am so sick of it that I can't get into that on Facebook right now. I can not feel like I didn't do enough, that we didn't make a difference, that we had NOTHING to offer the people of Utah after all of the work and abuse we took. So I share it here for all 14 of you: "Let us be very clear so that everyone can understand the uphill journey this is, and if you believe that marijuana has a medical purpose, you better be very ready to defend that position and take a part in moving legislation forward: The Epilepsy Association of UT worked diligently to get a bill that would help its constituents. When we asked other groups to be involved, they politely declined. We were on our own. We had proof that high-CBD strains of cannabis are very effective for seizure control. AS effective as other medications and all with fewer side effects. We went into the legislative session asking for ALL neurological conditions to be included since we also had proof of its effectiveness for MS, Parkinsons, dementia among others, we HAD to concede that point, we had to agree to intractable epilepsy cases. AND it has been helpful for MOST of those cases. Regardless of the advertisement, almost 90% of our families that have reported are seeing an improvement. The bill includes safety for small amounts of THC with higher amounts of CBD. It is NOT a CBD-ONLY bill. It was the FIRST bill in the nation and helped other states get legislation passed and yet, Utah gets nary a mention when discussing the push for legalization. It's as if...we did nothing. As much as people criticize and complain...you were NOT there talking to legislators, you were NOT there showing people your child seizing and you were NOT there crying when you had to agree to take out the help for your father who has dementia and your mother who was dying of cancer. We were. 10 hours a day, sometimes more for months. We sacrificed and where called names, told we were selfish and killing people by not fighting more. 10 hours a day! With 2 hours of drive time not to mentions meetings to numerous to count. And we didn't fight more? It's not a fight If you know that cannabis can help you, then YOU better be prepared to see it through, to call your legislator, to be polite, to put your ego aside and ask for a bill that will help you while providing as much security as possible without a price tag that is prohibitive and an infrastructure that would take almost a decade to set up. It's in YOUR hands now, what will you do with it?"

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What a thinker thinks

>> Monday, September 14, 2015

The move to Chicago has been nothing short of crazy and exciting. Bug adapted very well. He has always had change and evolution around him and done very well with it. It surprises people when they know he is on the spectrum. But he isn't truly Autistic in the sense of the diagnosis. He likes people, and to be cuddled, he likes trying new things and is back to turning lights off and on and opening and closing doors occasionally. We have the span that is the spectrum, right here, in our living room.

What I was NOT prepared to handle during the move caught me off guard just today, a week into being in Chicago, and that was Aiden.

Aiden was listing all the people in our family and relating them to moving to the new house. He said he liked the new house and playing with everyone and then listed us: Mom, Dad, Ava and Taylor.

I said: And Buddy.

He said: And Buddy.

It was at that very moment I realized the really crappy part of this entire 'living with special needs'.

A friend wrote today:

"When a child is born with a broken heart, it's not just one heart.  It's three, or more. Because it breaks the hearts of each family member as well.  When you remember the little ones with special needs, remember their siblings, those standing in the shadows."

Bug doesn't have a broken heart, so I use this metaphorically, what he has is broken in many ways and truly wonderful in others.

Back to AIden and I on the floor looking for cables, I said: Aiden, I am so sorry you didn't know Buddy, he would have been a great big brother to help you with all these things.

Right then and there I thought: I haven't really mourned my boy. Special needs life is a process of mourning. Mourning the child and the life you thought they, and you, would have. And adapting to the new normal.

It sunk in that I couldn't mourn because all these new things, new treatments, new hopes, come back in where I thought they were gone. We are constantly being reminded that there is hope he will talk, hope his seizures may be stopped, hope that he will learn and grow, albeit slowly. In so many ways, it's harder than the diagnosis: Living with the outcome.

So then I thought about the move itself, how Bug was actually part of the work to be done and not a part of the workforce.  He wasn't able to help lift the furniture, or pack the boxes. He wasn't able to help in any way. In fact, we had to use resources to keep him safe, keep him clean and fed. He's 12. When I was 12, Dad let me drive the car.

All these things were driven home by Aiden not including his big brother automatically. Something ANY younger sibling would do with an older sibling they don't interact with a lot. But his little slip caused too much thought, too much emotion, too much, just too much.

We love the new house, all of us, Bug included. He loves to walk through all the empty rooms and look out each window, he likes to go up the stairs and down the stairs and lay on the different textured floors: wood, carpet, rugs, tile, it's all here and he enjoys it. He smiles an chirps and it makes my heart happy, but he isn't eating well, at least like he was before, and I worry about him falling down the stairs, or wandering outside. I have to take care of all these things so I can rest better and not overreact to the simple words of a little boy who will learn more valuable lessons from his big brother despite not ever hearing his voice.

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Just, no.

>> Tuesday, August 25, 2015

Last night was one of those nights where sleep wasn't even a suggestion for the majority of the time. After a calm week of three seizures, Bug kicked it off with two Tonic/Clonic's from hell. Followed up with 3 Tonics by Midnight and that won him a Clonazepam chaser. He twitched until 1AM at which point he slept until 3:30 with no events. I thought we had stopped them but that was not the case.

From 3:30 to 6:30 he had 5 more. Short Tonic's with a lot of drooling.

This morning, I am beyond sad for my boy. I hate the universe and everything in it.

It's especially crappy because he is so much happier and more engaged and then...now I just wonder what he lost, if he lost anything and how sore and miserable he is going to be today.

Not kidding about the hate thing.

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On the 40th Day

>> Thursday, August 20, 2015

These last few weeks have been rough. Bug saw an increase in seizures, for no known reason he was seizing so much at night, rescue medications became almost a norm again. Almost. He has slowed down the last few days, thankfully because the thoughts of SUDEP were creeping back in.

Remember SUDEP? Sudden Unexpected Death in Epilepsy.  SUDEP that kills more people than Breast Cancer every year. SUDEP, the always-in-the back-of-my-mind-reason that Bug will die.

During that bad time with 5+ seizures a day (still a far cry from the worst he has ever been) I watched him lose a few things. It was heartbreaking. He forgot how to unlock the door, release his seatbelt (which will keep him safer but still...) and he stopped coming to me when I called him.

It happens. We lose some things and gain others, it's horrible. I hate it. It motivates me and then...something happens that stalls that motivation.

The stall this time is exactly 39 days long. We have been working on federal legislation to help others get the High CBD treatment that Bug and so many of his friends are using successfully here in Utah. Things were going well, the federal legislators understood the message, they understood the need, they knew that this legislation is right and good and will change lives for the better. At least, those who took the time to listen and try to put themselves in the shoes of parents and adults across the country with chronic conditions like epilepsy knew. There have been a few that will not listen, that see anything from the cannabis plant as harmful, and then there a few that think that this rescheduling is not enough so they won't support it. That last one is really baffling.

Change cannot come fast enough, but change for the sake of change alone will not get anyone a positive, replicable direction. We need to be careful without being paranoid. We need to not say: let's only try it on the very worst patients. Because when we do, and those patients do not respond, they say: See? It doesn't work. Well, they were the worst for a reason, it was difficult to treat, almost impossible to treat, and no one expects the very worst to always respond remarkably. You don't throw away the treatment working for thousands because a handful of people didn't respond. You just DON'T. But for unknown reasons, some are saying: Let's maintain the status quo. It was the status quo that almost killed these children, it was NOT letting doctors and their patients make the decision on their own treatment choices, it was removing one of the most successful tools in their kit: cannabis as a pain reliever, anti-spasmodic and immune regulator.

This bill, is a good bill. It provides for state's rights, parental rights, patient rights and the ability to provide research. Research that can be considered pure, untainted by perception. Research that can provide long-lasting change and relief for millions, yes, millions of Americans.

So while I watch my friends and loved ones struggle with speech, wonder where they are, watch them wait while the Todd's Paralysis runs its course, while I watch and lament for their unnecessary struggle, some federal legislators are going home and enjoying their last days of summer with their families and friends with nary a thought about the people that live minute to minute wondering if it is their last days altogether. No, I am not exaggerating.  I am not painting that picture to rouse sensibility into action. I am miserable with concern and worry for those I love and I see the chance to make that better and some of your legislators are sitting by the pool smiling in the sun, watching their children or grandchildren laugh without care.

For 39 days the laughter of their children will ring in their ears while we hear our children scream at the onset of a seizure. 39 days of being a family for the sake of being a family and not just spending as much time together because you never know how much time is actually left.

And on the 40th day, when they all return, what needs to be heard are the words of the people saying: do what is right, Hear this bill. Send it to be debated, send it forward with your blessing, send it into the history books as the bill that helped save children with epilepsy, cancer, and other normally helpless conditions. Change the world on that 40th day.

Take action. Make that 40th day OUR day.

To help, contact your Senator and Representative and ask them to support, co-sponsor and move forward the federal effort to reschedule CBD and Hemp.

http://www.coalitionforaccessnow.org/take_action

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First, Do No What?

>> Sunday, June 28, 2015

I was cc'd on an email thread today and felt the need to respond. Only because I believe the spin on this issue needs to stop, and stop NOW before it gets embarrassing.

The email had this statement highlighted in it:


The families and children coming to Colorado are receiving unregulated, highly variable artisanal preparations of cannabis oil prescribed, in most cases, by physicians with no training in pediatrics, neurology, or epilepsy. As a result, the epilepsy specialists in Colorado have been at the bedside of children having severe dystonic reactions and other movement disorders, developmental regression, intractable vomiting, and worsening seizures that can be so severe they have to put the child into a coma to get the seizures to stop. Because these products are unregulated, it is impossible to know if these dangerous adverse reactions are due to the CBD or because of contaminants found in these artisanal preparations. The Colorado team has also seen families who have gone into significant debt, paying hundreds of dollars a month for oils that do not appear to work for the vast majority. For all these reasons not a single pediatric neurologist in Colorado recommends the use of artisanal cannabis preparations. Possibly of most concern is that some families are now opting out of proven treatments, such as surgery or the ketogenic diet, or newer antiseizure medications because they have put all their hope in CBD oils.

Hmmm..... only a couple of things about this that are complete crap, the rest is just fluffy BS. I edited myself, add the colorful vernacular yourself.

So let me rewrite the headline from:


American Epilepsy Society President Says Side Effects of Artisanal CBD Oils Can Be So Severe No Pediatric Neurologist in Colorado Will Recommend Them 
To:
In a desperate attempt to stay relevant, President of Epilepsy Specialists Group criticizes patient reports and alludes to parent nullification, forcing parents to decide between Doctors and their need for better treatment options.
Parents want to try this, they already know that the mainstream medications are causing as many, if not more of the side effects they say they are seeing now. Bug had to be put in a near-coma three times to stop his seizures. And he wasn't on cannabis. OH MY HOLY HELL...what does THAT mean? What caused that?  Refractory epilepsy. Duh.

The idea that Doctors sit by their patients bed while they are in status...that made me laugh out loud, especially when they are puking, just ha! I love Bug's Doctors but none of the them held his hand while his heartrate was in the 30's. Glenn laid on the couch in his room, checking on him every few minutes and I sat, arm on the bed, hand in hand with my boy while I thought he was going to die. If there was a Doctor sitting beside him, I would know. And if she thinks we will believe the nobel, caring Doctor line, well...that's just cute. Paints a good picture though. Nice try.

I am rendered speechless at the thought that because a medication is FDA approved that means it's perfect and safe and a better choice than mother nature's kitchen. I can show page after page after page of both dangerous side effects and death's created by medications. Medications designed to help, that ended up causing dire results. Some, the luck of the draw because individuals are different and respond in different ways and others, tainted during the manufacturing process. Old, tired argument, get a new one so I don't have to scare people and YOU don't create more fear about cannabis AND FDA approved medications. Take another tactic, this one is a yawner and shows how out of touch you really are.


What I want to see are the numbers. The really real numbers. I want to hear from ALL of the Doctors that refuse to treat patients on cannabis. I want to hear them say why and then I want to ask them if they say this out of fear from federal repercussions, or from investments made by pharmaceutical companies. I want to know how many of these children with the reactions were patients BEFORE they saw them in hospital in status. Because if this is a new patient, there is NO way to know if the cannabis was the catalyst or not. What is being quoted here is...wait for it...anecdotal. Why is that, you may ask, she's a Doctor, doesn't that mean there is a scientific basis for it? Nope, not at all and here's why:  because it was NOT in a controlled environment. See how that works?

If you can not control all of the variables, then you are left with opinion, not science.  Or you have to admit that what you have is as good as what parents are giving you.

And I want to hear from their patients. I want to hear how they feel about their Doctors refusal to treat and if it is stopping them from trying the artisan oils. The parents I know, when faced with a Doctor that says no, find another. THEY FIRE THEIR DOCTOR.

In one such case, the parents were told by their then-current Pediatric Neurologist their paperwork was lost, then they sent the paperwork in, then they had no idea if the nurse sent it in. So, after months of cat and mouse, the parents took their daughter to a new Pediatric Neurologist who agreed that their child was severe enough to try the oil and signed the recommendation. 


From the first dose, the child has been seizure free.

Months later, their child finally got access, their child is more active, has not been in status ONCE, which is better than once a month (documented), is learning to speak with technical assistance and even making some noises. Is laughing.

When I met this child and the parents years ago, there was little movement, little eye contact, almost no smiles. When smiles happened, pictures happened. Once or twice every few months.  Last week, Mom posted a video of the child giggling. Something I had never heard.

So, Doctor, who is doing no harm (remember that part of the oath you took) I DARE you to call Mom and tell her she can't have the CBD Oil. I DARE YOU. Let's book the Oprah Show and get the two of you on it. Doctor, who is trying to kill all hope for all families because she is overwhelmed by the response and can't keep up (OR owes someone something for being vocal about the evil and dirty CBD) versus Mom who met her child for the first time. OR better yet, Doctor naysayer versus a smiling child.

If you are so concerned about the quality and the dosing, become a part of setting the guidelines for it.  Lend your voice to getting it FDA approved, or at least TESTED, and then help establish the dosing protocol. Because, good Doctor, you are behind the curve, you will not get in front of this steam roller, you will not persuade desperate parents watching their children suffer to NOT try CBD with or without THC, you will NOT, they have given you your chance and feel hopeless. And now, they feel betrayed.

If you were Bug's Doctor, you wouldn't be for long. He is your patient, and if you are not committed to trying to help him, then I will find someone who will. I will find someone as dedicated to helping him as we are.

If any of you that read this have a story to tell about your Doctor in Colorado denying access to, or help in getting, CBD as a treatment, please, feel free to share this post and tell your story, or post it in the comments. I would LOVE to hear this. Good or bad, I can take it, and the world needs to hear it. No, your DOCTORS need to hear it.




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Number 61: The Conversation

>> Monday, June 22, 2015

We had expected the call to come the next week (this week) and were quite surprised to be at lunch on Friday, June 19th, 2015 when the good Dr. called to tell us he had received the confirmation earlier than he thought.

He explained that they sent away for the assay from California and when they received it, it didn't work. So, they made their own. One point for the Dr. and I told him so. Glenn never makes assay's for me. 

So they made the assay, and they ran it. A few times. They wanted to be absolutely sure before he called us. We were in a restaurant and I told him I would call him back. An hour and a half later, right before meeting with some wonderful folks in Ogden about helping with the Epilepsy Association of Utah, Northern Region, I called and left a message. As we were finishing the meeting and laughing, he called back. I ran to get Glenn and we headed out to the car. 

We listened as he detailed what had occurred to get us to this point. He told us that Bug was unique in the entire world. 

Well, we know that, but he told us why.

Bug has an insertion in the location that they have NEVER seen before, all of his KBG symptoms will be different, even though KBG symptoms run the gambit anyway. HIS will be all his own. And from our research, we have verified this to be a factual statement. So far, his seizures are the absolute worst part of his presentation. Whereas, seizures are not the most common in KBG patients. The short stature and bone growth issues seem to be the most common. Bug is short, but we are more concerned with the seizures and developmental delays. 

KBG was first identified in three families using research based on the work of Dr. Opitz and others, who is now at the University of Utah: 


"Herrmann, J., Pallister, P. D., Tiddy, W., Opitz, J. M. The KBG syndrome--a syndrome of short stature, characteristic facies, mental retardation, macrodontia and skeletal anomalies. Birth Defects Orig. Art. Ser. XI(5): 7-18, 1975."

Dr. Opitz has been quoted as having a preference for naming findings based on the families affected by using the family's initials.  I've yet to find out the surnames, but I haven't been looking at the naming convention so much as the treatment and prognosis. And the treatment is not uniform. It's as symptoms present, and apparently, those change with time as well. We are left with looking at gene therapy to truly help him and we may have that option. But I get ahead of myself, we haven't even spoken with the Dr face to face or anyone that might be able to guide the treatment plan.

The most common symptoms:

  • physical abnormalities of the head and face (craniofacial dysmorphism)
  • Fibrous joints (coronal sutures) between certain cranial bones of the skull may close prematurely; as a result, the head may appear unusually broad, short, and/or rounded
Characteristic facial features may include:
  • eyes that appear widely spaced (telecanthus) or crossed (strabismus)
  • wide, bushy eyebrows
  • and/or thin, bow-shaped lips
Characteristic features may also include:
  • abnormally large teeth in comparison to the jaws (macrodontia)
  • jagged, crowded, or misaligned teeth
  • and/or unusually short, flattened, supporting bones or sockets of the jaw (mandible) that house the teeth (alveolar ridges)
  • short stature
  • speech and hearing impairments
  • and/or have mild to severe levels of mental retardation
In some cases, mental retardation may be attributed to a small head in relation to the rest of the body (microcephaly)
  • abnormal bone development (skeletal dysplasia) such as malformations of the bones of the spine (vertebrae)
  • shortened middle portion of the thigh bones (femoral neck)
  • abnormally developed hip bones (hip dysplasia)
  • and/or shortened, hollow finger bones (metacarpals)
Features may include
  • a sunken, pushed-in appearance of the chest (pectus excavatum or “funnel chest”)
  • webbing or fusion of the middle toes (syndactyly)
  • a single deep crease across the palms of the hands (simian crease)
  • and/or six fingers or toes on one limb (hexadactyly)
The number and severity of these symptoms vary widely among affected individuals.

We spent 40 minutes on the phone, listening, asking questions, trying to take in EVERY little detail. When we hung up, we agreed to meet in person this week and talk details. The good Dr will try to answer our questions and we will talk about where we go from here. The one thing that really stood out was there is no support group or foundation for this syndrome. I looked at Glenn and he said: yep, I know. You'll make one.

We have started building the KBG Foundation, I mentioned this is his diagnosis post but we have progressed a little further. The Foundation will be an affiliate of the Epilepsy Association of Utah until the NPO paperwork can be filed. I will be too busy to file the paperwork immediately so having the little extra time will be helpful.

In the last 3 days, TWO families have been identified and I have spoken with one of them and sent an email to another. We know there are a few families in Turkey that I have yet to be in contact with, but I need to find someone to translate...any takers?

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The First Post - Meet Glenn's Diagnosis

>> Saturday, June 20, 2015

Let's cut to the chase shall we?

Glenn is unique. Uniquely unique as it turns out.

He has been diagnosed with KBG Syndrome. That, in itself, is rare (About 60 documented cases worldwide) but the really unique part of Glenn's diagnosis is that he has an insertion in the chromosome that is related to KBG Syndrome whereas most patients have a deletion or duplication.

Glenn is the ONLY documented case of an insertion in the world. The ENTIRE world. Animal or human. At this moment he is 1 in 7 Billion. We are confident there are more, but where? And who?

Important to note: Bug has two copies of this gene, one good and one bad, just like everybody. BUT his bad boy is more dominant, it took over the house.

The details for those of you playing along at home:

In the ANKRD11 gene we have 20 exons. One right after another, lined up lovely (in Bug it's lovely until we hit exon 10). But hooray! That's what we should have, sorta. Those exons work together to produce a sexy protein; ankyrin repeat domain 11 (ANKRD11).  In Bug, we have 9 lovely exons and then...we stop building lovely things when the ugly stepsister shows up: Exon 10 (The Insertion Mutation). After that we have, maybe, 10 exons with 'good personalities' (read: might be lovely but they are not being used). At line 10 of that code, we have an anomaly. Half of that gene is wonky which means that the ANKRD11 protein rides the short bus (they are LITERALLY too short in length) with Bug. Seems simple doesn't it?

Well, it is simple really, almost beautiful in its abilities to function mostly perfectly but it's also very problematic. This is the foundation for a lot of things. Face shape, teeth size, intellectually ability, hearing, sight, organs...hands...they all can be affected. And the treatment, you may wonder? Treat the symptoms.

Chances are almost non-existent that his condition will be replicated in our family. There is no familial inheritance in play. That's a relief.

There is no magic bullet. And there is no large population affected, there is no Foundation, there is no unified support group.

What there is...is Bug.

So I put this out into the world, looking for more KBG Syndrome families or people that MAY have heard this as a possible diagnosis. Let's compare notes, let's talk about what we know, what we don't know and let's kick this to the curb.

Please share this post.

Invite people you know that have KBG or another ANKRD11 diagnosis to join the new FB page, KBG Foundation, and share their stories while I build the KBG Foundation (Yes, we are forming a Foundation to try to help our boy and the possibly countless others like him).

The more we know, the closer the cure.







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For reals....

>> Wednesday, June 17, 2015

Another week.

I can not make this up even if I wanted to.

We know that Bug has a pretty big genetic boo boo, we need confirmation and, there has been a delay.

If you have been reading this Blog for a few years off and on, you KNOW this happens to us ALL THE TIME. ALL. THE. TIME.

Just when we think we are there, we have some answers, there comes a delay. It's as if the Universe does not want us to know. As if we have to earn it, it's too special.

This entire week has left me at a loss, mired in the knowledge of the lack of understanding. The completion of 8 years of looking. I sound greedy, and yes, I am. His diagnosis is sitting on a computer hard drive having algorithms run against it. Oh, the irony. All these years and it's technology that brings us the farthest, technology that Glenn and I could probably recreate!

I was thinking today, not that I do that much, but I thought: Bug has trisomy traits. But does not have a Trisomy mutation. He has A LOT of Trisomy markers. But he is a Genetically Normal Male. Oh yeah? Wanna bet? So if he has these traits but does not actually have the mutation maybe the mutation he has is a primordial version of it. Maybe he holds an answer.

I also wondered about the Stem Cells.

When Bug's little brother was born two years ago, we elected to bank his cord blood. We were called by the President of the Company that is holding the goods for us and he said: Normally we get about 100,000 to 300,000 but from yours we got over 1,000,000. So these stem cells...can they be used to help Bug? It's something I am looking into. The possibilities...if we can ever get the results...are that which dreams are made of.

Could we cure Bug?

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Distraction

>> Friday, June 12, 2015

The long wait is taking its sweet time. I have been staying busy and active and trying to not focus on what lays ahead, but as soon as I am not neck deep in a project, I look at things and relate them to the possible genetic outcome.

For instance:

I had to go to the Pharmacy and pick up his refills, not a big deal, takes a few minutes, costs a few bucks, but when one refill is expired and not ready and you have to go out to the car to get it AND then you end up waiting, what happens is a little off the hook.

Ava said:

Can I have a drink? Yep, and she chose it. It was sugar.

Ava said:

Can I have some candy? Yep, and she chose it. It was sour and sugar.

Then she saw the ring pop and we bought that. I answered a few questions and was incredulous when I was told that the Diastat needed a pre-authorization. What, I said, What? It was the Pharmacy's error, it turns out, but straightening that error made me sit longer. And looked around. I stared at the wall of supplements ahead of me and thought: what if what he needs has been in front of me for 5 years and I have been an arms length away from it this entire time?

One can not live like this so I moved into a different place mentally and focused on Ava and the fact that she was neither eating her sugar or drinking it.

When we got home, I watched Bug. I watched him play and smile at me. I watched him trade toys with his little brother. My mind was locked in the potential of what next week may bring.

More of the same? Less time?

I asked Glenn if he thought about it and he said:

No. It won't change the outcome. It is what it is and nothing I can think, at this moment, will make a difference.

Yes, I agreed, point taken.

Yet, here I sit. Guess what's on my mind?

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Longest. Week. Ever.

>> Tuesday, June 9, 2015

We received a phone call today, then an email, then a call to the EAU office. I had been busy getting stuff ready for membership meeting and got to returning the call later than I had intended.

Although we know there is something genetically amiss with the Bugster, the thought of there actually being something found is foreign.

Until today.

That call led to this:

We need to verify the findings before we tell you what we are looking at.

Well, OK, let's do that. Wait...wait...what? Really? We WERE right?

Yes. A lot. We were right in a big way it seems.

There are areas of our genetic code where we KNOW everything should be aligned and doing well and plodding along in synchronicity. 5 of the 6 in our family are synchronized. Bug is not. It's a new genetic variant for us. Something very rare but has been seen before. And for now, that is where we sit.

I am not kidding.

For another week until the results can be confirmed. A week of me putting it out of my mind, and yet slapping me back into it when I look at him. A million questions repressed. Every part of my brain is swimming with the possibilities and it will swim for another week.

How can I focus? How can I NOT obsess over trying to guess what it means and what IT is before he tells us? I can do it because there a million OTHER things to focus on. Things I have been focusing on before much else, before him sometimes. Things that I think are important and it turns out, are only important for a short while until people forget what it took to get to this point.

Now, we have a diagnosis, a really real probability of knowing what is going on with Bug, of knowing WE are not carriers, we did NOT pass this on, he just IS.

So for the next week, forgive me if I don't put everyone else first. And forgive me in advance if I just don't see your priority as my priority. Give me this week. Let me be. Let us be...just us. For another week. Then it may be us and this diagnosis. A flurry of activity surrounding it, emotions, dedications, acceptance, grief, all the things that come with a diagnosis. Most importantly, a new direction.

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Test results and a rant.

>> Monday, June 1, 2015

Vitamin D.

Turns out that vitamin D and Bug are not playing on the same team. He is deficient. Not a shock, really, a fair amount of people taking AED's need to check their Vitamin D levels. Combo of reasons, I imagine, I didn't look into the 'why', I just took this one at face value. Usually, I learn all I can and ask around and delve into how our body creates, uses and releases Vitamin D. But really, do I NEED to know?

It doesn't seem to make much difference what the answers are, and if the why's are brought to light. We don't DO anything with the extra information.

He is doing so much better since taking the extra Vitamin D. He had a bad round of one day of 5 seizures when he was getting sick, but aside from that: one seizure a day. Maximum of two. His energy is up, he is more attentive, more persistent and just...better. Thank you Vitamin D.

I have stopped looking for answers to everything. I am tired of talking and talking and getting....nothing. Of getting put off. I went so far as to lay my reputation and time and money on the line and aside from thank you's, we are no closer to being able to solve the why. I admit it, I am jealous of those parents that have answers after writing some letters and visiting a couple of Doctors, I am. What makes Bug's story not worth a happy ending? What have *I* done differently than those other parents? Because, if we are honest, there are very few Doctors that have made finding out what is not working inside of him a priority. Mostly they are reacting to my questions. And while I am good at asking the right questions, I am getting tired. Tired of the answers either being not noteworthy or a shrug of the shoulders and: I don't know what to do with this. And back to the research I go. BUT...At THIS moment, I am really tired.

Don't say burned out. I will cut you. I am not burned out, I am frustrated, feeling like helping Bug will NEVER happen and tired of being wrong for being right.

We have been at this place for 3 years. I have been meeting people, helping people, sharing company information for organizations that may be able to provide an understanding of how his life took this turn. And we get: lost results, our work praised for other people, organizations being valued for the work that *we* have done and people complaining about how we don't do enough for them. How I ruined it.

Here's my response:

Sorry. You can't blame ME for YOUR failure. You will, but I won't take it. I will rise above it and continue on without your blessing. I don't need it. I will continue to help people where I can, looking for something to help my boy in the meantime. I will do those things I KNOW will help the most people and I will not think again on how you think I did something TO you by not lavishing praise on your efforts that are ONLY self-serving. You go ahead and keep taking credit for our work, you go ahead and pretend to be something wonderful, because the people that KNOW, know you are faking it. There is no sincerity in your words.

So, this summer, while he smiles more, and while he stomps and fights with his little brother over who gets the Batman Car this time, I will keep plodding along looking for what the hell he has going on. Tired as I am, there is no one else that loves this little monster like I do, and I will make sure he has every chance to be heard. Even if I am being dismissed, HE won't be.

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Little more than nothing.

>> Sunday, May 17, 2015

Do you ever feel like no matter what you do, life has other plans? No matter how much diligence, effort, study and action you engage in, it means nothing to the universe? Yea, me too.

Bug's seizures have been within baseline, it's his mood. He is lethargic, melancholy, smiling only every so often and when he does, it doesn't last much longer than 30 minutes. It's as if he is sick, without being sick and he is wearing 100 pounds of weights. He is walking with his knees slightly bent and I find myself wondering if he has something broken. He just lays on the ground and watches me, or watches television or half-plays with a toy, nothing 'little boy' about him, more like old man. I hope it's nothing to worry about but my Mommy sense tells me: something is amiss. Most likely, it's allergies or something along those lines and my Mommy sense is full of it. I am often full of it. It's my natural state.

He goes to the Doctor tomorrow. Hopefully, we can get all the tests I want him to have and we can get some answers or at least a direction. Long night ahead, followed by 'normal' or 'within range' and I will fade into silent misery with concern about what we are missing.

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What's a little recess among friends?

>> Monday, May 4, 2015

Maybe it's the moon, maybe it's the weather, but Bug's seizures have picked up a little. Still, not horrible but 4 yesterday and sitting at only 1 today.

And I am somewhat sensitive.

I took him into school this morning and mentioned to his wonderful teacher, that I noticed he was running a little warm. Not a fever, just warm. He used to run warm when he was 3, he was ALWAYS warm to the touch, it was a sign of his folate condition. So this has me worried. Add to the fact that he seized at school last friday as I was getting there. He was postictal and having a really tough time recovering when I joined them on the floor of the office. While he struggled to come all the way out of it, I noticed he was really warm but not sweating. His temp was 99 but it was not a fever. That's too warm.

As I handed him off this morning, his teacher said: so no outside today.

It was a knife to the chest and my eyes stung. I cried most of the way back home.

My boy can not play at recess.

A simple thing. And everything when you are in grade school.

My boy can not play outside.

For those who knew me as child, you will know how difficult that fact is. I have been aware of it for years, we are careful because of it, but today, for some reason, it hit me really hard. Putting it in those terms: recess. He can't play at recess.

That made the seizure in the car on the way to pick up Tay even more hard to swallow. He recovered quickly, and I didn't hurt my arm while trying to keep his head up, but man, that was still tough.

He is smiling and now. Taylor, Dad and the other children are getting ready to go outside and Bug and I will stay inside. We will exclude ourselves from the beginnings of summer in a neighborhood full or children. We will cuddle and maybe smooch, and we will enjoy life the way we can. For now.

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Walking on air.

>> Sunday, April 26, 2015

Feet shouldn't leave the ground? Ha! Kiss my...er...feet leaving the trampoline.

His little sister, Taylor, was celebrating her 10th birthday with a few friends at The wAIRhouse trampoline park. I thought it would be great for her and her friends, since Bug would probably sit upstairs with the pizza and water and the focus would be on her. Once she got into the park and onto the trampolines...we ceased to exist. As it should be. So we thought: this will be a breeze. But then something amazing happened.

Bug hasn't jumped spontaneously on his own for at least 7 years. He used to love to jump on trampolines, we even have a small one downstairs, but he wouldn't jump on it. We tried to entice him, show him it was there and drag him into it. He sat there. Would NOT jump.

This was entirely different. When Glenn got him onto the tramp, he realized immediately what it was and jumped. For an hour, off an on. He didn't fall once. NOT ONCE. He did trip once because he was looking away when he was stepping over the padding. But the rest of the time, and all the video we have shows that he adapted to compensate for the tramp.

Not only is he on the road home, he's jumping on it.  Happy almost birthday Taylor!


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The Road Home

>> Wednesday, April 22, 2015

Bug's seizures have calmed down now that he isn't as congested and sleeping better. Sitting at one a day for the last 4 days. I'll take it. Even more surprising; he let us do this:

Why is this a big deal? If you don't know, it takes effort and neurological 'muscle' to turn hands-up and sustain it. We have never been able to take a picture of his palms without holding his hands for him. AND we got 4 pictures of his hands open. His spinning toy was sitting next to him but he sat there while we photographed ...hands open. It stunned us.  Thank you Epidiloex. Thank you Cannabis.

About that....this last month the Idaho Senate passed a bill, (Senate Bill 1146)  the House Committee rejected and then REVERSED their decision on the bill, the House then passed this same bill and then, last week, the Governor vetoed the bill. Vetoed. And then he throws this gem out:

"Of course I sympathize with the heartbreaking dilemma facing some families trying to cope with the debilitating impacts of disease. They find themselves grasping for an answer - any answer that might help reduce or eliminate the pain and suffering, or that might provide some hope for a better, healthier future."

Well, of course he does (sympathize) no one wants to be the insensitive ass that says no to dying children.  His statement is not anything I haven't heard before but I still the feel need to share my thoughts on what this statement DOES NOT address.

First: There IS no dilemma. That ship has sailed. The research that exists, the children and families that have had access to and are using cannabis for various conditions are no longer being silent about it. They are telling their stories, sharing their good and their bad, it's all there, in the interwebs for any reasonable parent of a child with a severe and potentially life-threatening condition to peruse, cull and base their decision upon. It's everywhere and the nation has not yet fallen apart.  The question for legislators now is: how do you get ahead of it?

Not by negating its safety and efficacy for a variety of conditions, not when there are people standing in front of you testifying truthfully to its impact on their quality of life. You do it by allowing your citizenry access and you follow their progress. You partner with the people that have placed their trust in you to continue to trust YOU to watch out for their best interest. By slyly saying: I do not believe you, you are calling people liars, people who have NOTHING to gain BUT hope for an improved quality of life.

Parents are now becoming criminals. It's that simple. They are not going to be dissuaded for any reason, from trying a cannabis-based treatment. They are now willing to take it further then ever before, just so they can rule it out. And guess what? They are completely OK with it. You forget, these same parents have held the hand of their dying child, helpless to do anything, they have heard the words 'kidney failure' and had to stop the drug that was helping the most with seizures because it was killing their child. They have buried their children and will NOT let that happen again.

Second: If you have never heard 'Idiopathic', then there is NO way your platitude will placate those that have. Stay away from even alluding that you know what I, what WE are going through.  WE came to YOU to help with our problem and we provided the very reasonable, scientific-backed solution and you say only that you understand the desperation? What? If you did, you would NOT say we are grasping as if we should be doing something else.

Third: Hiding is never done from a position of strength. And by saying there is no research to support the request from parents and patients is not just a lie but a denial of facts in hand. Let me provide you with a link to research we compiled a little while ago for those of you that haven't learned how to use Google yet:

http://hope4childrenwithepilepsy.com/research-links/

And lastly: I give you Glenn, my son, the light in my day. Glenn, who has found his way home.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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