Rolling along

>> Monday, December 15, 2014

I can not begin to put into words how much I hate epilepsy. I hate the roller coaster of having a good week and then a spectacularly bad week. Of having plans that have to stay fluid because you never know if you have to cancel. Wondering what you missed that made it worse, what you did to make it better. Explaining to other children who want to play with your children what seizures are and how they may be scary but HE isn't scary. He is just a little boy. A little boy turning into a little man and while that sucks for most people anyway, it's especially horrific for people with epilepsy.

I hate the look he gives me when he is having a complex partial seizure. The look that says: make it stop. And I hate having to wait to help him to see how bad it's going to get first. I hate having a threshold that changes based on seizure activity.

Tonight is one of those changes.

The last few nights, he again, has been seizing every hour or so. Normally, we do not go for the Diastat, I just sleep next to him and wait it out. That usually lasts a week. A week of 5+ seizures a night that awaken him from slumber. A week of watching the seizures get uglier and uglier every hour. A week of watching him everytime he goes to sleep. Naps are especially bad. Why? Not just because he seizes but because the ONLY relief he gets is torn from him. When one is not sleeping well and one naps, if that nap is interrupted the cycle gets worse and the mood gets worse and bad things begin to happen.

So tonight...he has already had 3 seizures. One more and he is getting Diastat. No, I am not a health care professional but I am planning on giving my son Diastat for the second time in two weeks. I am giving it to him to stop bad things from happening and I will NOT question the decision to do so. I know him. And that's why I will help him. There is not an option here, there is only relief and the universe will hold it against me if I don't help when I can. So, I stay awake a little longer, waiting for the inevitable and trying to make things better for others.

I love you little man. I WILL make it better.

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One week.

>> Tuesday, December 9, 2014

Because when we fail, we fail in spectacular ways at this house.

Bug did make it one week. But tonight threw at least part of that week into doubt.

At 10:55 he fell asleep. At 11:08, I said to Glenn: He made it! At 11:09 he had a small seizure. I swore, held him and kissed his head. He fell back asleep. And promptly had another seizure.

He did this 9 times last night. All the while, the seizure intensity was building. At 6:00am he had a 2 minute T/C and has been sleeping peacefully since.

Yesterday, he woke up kind of pensive, not very smiley and now I think: He had a night like last night the night before. I can't prove it, and I need to see what I can do to find all the camera equipment that got packed in pieces in different boxes so that I can.

I'm sore, I'm pissed and I am still thinking the Epidiolex is too high. But it's curious thing, being in an IND, there is no set doseage, only a best guess, that's what we are here to do; help them determine dosing guidelines. Everyone agrees that he is more aware and more present, we just need to get to a stable baseline. For the record, he has NEVER had a stable baseline. Just when we have a new baseline, he adapts or grows and BAM, new baseline.

So while, playing with a new medication isn't surprising, I'm still bummed as hell and need to buy christmas presents. Which, is its own special kind of glorious misery.

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Not to jinx it....

>> Monday, December 8, 2014

The week before last was ugly. Every night we saw at least 5 seizures. He would fall asleep and within 10 minutes a seizure would awaken him. It would happen every time he fell asleep until about 1:00am when it would slow down.  It was a nightmare that progressed.

I told Glenn his Epidiolex was too high (no pun), and wanted to reduce it. He wasn't so sure and wanted to wait to see if Bug was getting sick.

By Monday, December 1st, I was done waiting.

Here's where my arrogance comes into play: I have NEVER been wrong about Bug and his medications. I know within 30 days if we need to give it more time. EVERY time I have waited longer than that...things got worse. So that week, I was not going to wait any longer.

Monday night he needed Diastat. After the 7th seizure in 4 hours, I didn't hesitate retrieving the valium. I gave it to him and he slept peacefully all night. I know, because he slept between Glenn and I.

By Tuesday we were watching him closely and I backed him down to 3ml 2 times a day.

Wednesday we awaited the seizures at night. They never came.

Thursday, Friday, Saturday and Sunday. Still nothing. Here we are, a full week later and still we have not seen a seizure. By writing this I am almost guaranteeing he will seize. It's just what happens but still...in 10 hours he will have hit a new 6 year record. That's right. 6 years! Since he started seizing every day, only Lamictal introduction 6 years ago reduced his seizures as much.

I'm holding my breath. After 11:00pm tonight, I will breathe because then I can say: He made it a week and everything after that is gravy.

He is following direction and showing preference, now if he can only TELL us he doesn't actually like noodles...that would be something!

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What's that you say?

>> Wednesday, November 12, 2014

Recently, I have been reading posts that other special needs parents make on social media with a different feeling:

Sadness.

Not for them, for my Bug.

When I say Bug is nonverbal, people nod knowingly and say: that's OK he knows what we mean.

No, actually, he does not.

He can't follow simple directions, he is just now responding to his name on a regular basis, he can not pick out letters or numbers or colors. His school thinks he is, but there really is no double blind in a 50/50 option. When I ask him a question and he seemingly gives a positive response, I then REPHRASE the question creating, based on his previous response, what should be a negative. He reaffirms the positive. Or should I say, he follows the same pattern.

He has, just lately, been a little more responsive but when I read these posts that say:

"My child is in a wheelchair, tube-fed, and can not move at all but communicates his/her needs through electronic devices"

I realize how profoundly non-commutative Bug is. It makes me sad. I have no clue if he is pain, or happy (aside from a smile or a newly-found giggle), we do not know if his tummy is sick, he is not engaged in our world most days, he just spins.

Does that sound like despair? Today it is. My child, who CAN walk, and CAN eat is not present, is not *here*. He *is* though and we love him
but it still hurts my heart.

He is so lovely and so...trapped.

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Again with the tears...

>> Friday, October 31, 2014

I have posted before about how every so often, one of the tens of thousands of seizures my little prince has, affects me profoundly. This morning's seizure did just that.

Maybe it's the time of year...I skipped over his seizureversary on the 25th because I couldn't deal, and I haven't decorated for Halloween yet. Maybe it's watching his little sister hit that age when he started seizing and wondering...

Maybe it's also watching Aiden do all the things Bug used to do and more, and maybe it's remembering how much Bug loved Halloween. I recall two-year old Bug's little puppy-butt walking from door to door and his face lighting up when he realized that when he knocked on the door, they would give him candy. With each door, and each piece of candy, he would turn around, hold it up and smile at me. He only did that for that one Halloween. By the next Halloween, he wouldn't touch the candy and we gave him slim jims and he had only had 9 seizures by then.

Maybe it's all of those things that caused me to cry for 20 minutes after his seizure this morning. And maybe it's none of those things. Either way, I won't dwell it, I will move forward, dress Bug up as a Ninja Turtle (Donatello) and we will enjoy our not-seizure-free Halloween. For the 8th year in a row. Seizures have always intruded. And I have always resented that. But he is smiling and making noises so off we go...no more tears...onto the fun!

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When Bug is sick.

>> Thursday, October 23, 2014

When Bug is sick, the whole world stops for a few days. He doesn't eat, he sleeps a lot (which means that when he feels better he won't sleep almost at all) and he can't tell us if he is going to puke. So, he just sits there and vomits. Which means antiepileptic medications are next to useless. We still give them to him, sometimes they stay down and other times...they end up on my lap. And we don't double dose, that can be dangerous.

He doesn't quite know how to handle it either, which is so difficult to watch. Most kids whine and complain a little, they keep playing off and on and they fight the administration of the medications and then sleep it off. He silently begs us to make it go away, there is no explaining that helps him, he just reaches out for help and we can not provide more than some attempt at comfort. Cold medicines are supposed to be avoided because they can lower the seizure threshold. Get that? They can make him seize more. Over the counter. It's mostly the antihistamines but those are the only things that help him. So we give them sparingly.

He tries to play with things that bring him joy, but he can't always figure out how they work, when he is sick. Why is that? I have no clue. He can't even find comfort in his favorite toys.

The past two days have been ugly for him. Only a few seizures but a ton of feeling crappy. He hasn't really had a fever, he just feels warm for a few hours and then is normal again...well...his normal anyway. That 'not quite' a fever thing has got to really feel horrible. I wish I knew.

He ends up just looking at us with pleading eyes and we can't really do much other than what we are doing: trying to keep him hydrated, cuddle when we can and just be there when he needs anything. He really is the saddest little man when he is sick and it breaks my heart it lasts so long, but not a lot to do except wait it out.

That seems to be the motto for his life: Wait and see.

And pray it doesn't make him worse.

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Weekend Update

>> Monday, September 29, 2014

Friday was a crazy day.

At 8:00am, we were not quite to Primary Children's with Bug in tow. After the nervous excitement of waiting to start a CBD treatment for Bug, being late made me ill. We were only 15 minutes late. But as soon as we started checking in....

Bug peed. A LOT. ALL OVER THE FLOOR AND CHAIR. His diaper was full, his sock and shoe were full; the boy peed A LOT. Glenn took him into the bathroom to clean him up a little while I finished.

I said to the lady checking us in: We had a urine accident, you might want to call someone.

She mumbled something about our insurance and then said: uh huh.

She never called.

I wiped up the mess and, with a handful of diaper wipes, they called his name.

Oh goodie!

He's in the bathroom, I said.

OK, we will wait.

When we got back to the room, sans pants, socks and shoes, the lovely Fumiko entered our lives. She described what was required from us, what we would get from them and how the world would revolve around reporting...not really revolve but she's calling on Friday.

Then in walked the good Dr. We talked about Bug, we talked about his seizures, the types he had most frequently and they types he had less frequently. We talked about his cognitive development (Bug's not the Dr.) and then they gave me the seizure papers that I was to use to detail his frequency of seizures. It's simple, straightforward and I screwed it up. Twice.

While we were finishing up, Bug pooped. Nice. We changed him, went to get the labwork, met some nice people whose daughter has LGS and then we headed over to the pharmacy.

Once we were outside PCH, we drove to Walmart to buy pants and gave him his first dose while in the parking lot.

video
What you don't hear after the administration is Daddy saying: You seeing pretty colors Bug?

After that, he fell asleep and promptly seized. Ok, so not a miracle out of the gate, but since Friday, only two seizures.  His possible movement disorder is definitely not as pronounced and hasn't had melatonin either.

We double the dose on Friday.

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Make it stop.

>> Monday, September 22, 2014

I can't help but think that I am losing my boy again. His seizures today are so violent, so heartbreaking that I can't help but wonder how many he can have of those without it killing him?

Truly.

I do not exaggerate: Lips blue, choking and gagging, full tonic/clonic, convulsions so hard I was sure he would break something. He has been laying down or stumbling all day. What is different? Why now? What the hell will it take for this to stop? Tell me. I will pay the price, I will make it happen. So much helplessness no parent should feel.

I can't cry, I will never stop. It just sucks.

I would say: can we start over with a new day? But to get to that new day, we have to have a night. And night has long been the enemy for him.

I want to scream, to throw things and punch things and make something broken, I want to wake out of this nightmare and have my boy back.

You see, we all go through days like this. We hate, we flail and then we gather ourselves up and go about it again, working to make it better. It may get better, it may not, but we have to try, you know?

We just have to try.

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Last night sucked

>> Thursday, September 18, 2014

By 10:00pm Bug was still all sorts of hyper. Clapping his hands, jumping up and down, spinning toys incessantly. So, we broke out the melatonin.

Before you criticize, let's recap:

Bug has a Folate Autoantibody, Bug has Cerebral Folate Deficiency as a result, he does not produce enough serotonin on his own. Serotonin converts to Melatonin and that helps us sleep. Bug does not get enough to help him sleep.

He needs melatonin every so often. We try not to give him it every day anymore, now that he is getting the Leucovorin, he seems to need it less, but last night...MAN...did he need it.

By 11:00 it was helping him and he would drift to sleep. For about 10 minutes and then he would sit up suddenly and clap and chirp and be all....happy. It got old by Midnight.

At Midnight he fell asleep and at 12:10 he had his first seizure. Mild but there it was.

He slept next to me all night and he tossed and turned a little and if I moved AT ALL he would wake up and clap. At 3:30 he had another seizure, 10 second tonic.

4:45 he had another and again at 6:00.

It was a restless night. What was different you may wonder? Nothing apparent. This just happens. This is epilepsy. This is Autism, this is a non-verbal child that will never tell me how he feels. It may be he drank a lot of water, it may be he didn't get enough vegetables. We don't know. And living with that, takes adaptation and understanding and an amazing amount of patience. Especially at 3:00am.

He made the bus, and seemed to be happy. Nothing to do but see how the day unfolds and try not to think about it all the time.

Sign me up for nap.

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This unknown.

>> Tuesday, August 26, 2014

There is very little worse than watching your child slipping away without a cause. I watched my oldest child, the one I never thought I would have, dying in front of me, helpless to do anything about it.

It's just epilepsy, you might say, and epilepsy doesn't kill people.

Well, it does. But in Bug's case, the cause of the seizures was killing him. His cells were tainted, he was not producing energy, he was in Status Epilepticus 4 times in 16 months. Each time, it became harder to bring him back. 

One time, when he was in Status and in the hospital on heavy Phenobarbitol doses, I watched his heart rate drop to 36 beats per minute and I said to Glenn: Bug is going to die. And I held his little hand and I couldn't let go, I would hold him while he struggled. I listened to the heart monitor beeping slowly and expected to hear it stop. I expected to hear it stop. Glenn told me: he's not going to die, he's too strong. But I didn't believe him. I knew this unknown thing would kill him. 

4 days later, he came home and I hovered over him. I could not get enough of his smell, of his smile, of what little laughter we got.

What brought this memory back? 

Two days ago, he had 7 seizures in as many hours and he was sleeping and seizing, and sleeping and seizing. Not a good sign. And then...he slept for 14 hours and hasn't had a discernible seizure since.

It's that up and down, that: what is different? That scares me.

We know he is being treated for 'the folate thing' and that it is being successful. To a point. We also know that no one has ever seen autoantibody numbers that high before. So, is this treatment enough?

Children with what Bug has, in milder forms, are usually crippled by the age of 14, without treatment. Blind shortly after. And then...don't make me say it.

He's almost 12, so when things get abnormal, I wonder if we have to modify his treatment. But without quantitative analysis of his autoantibody levels, we have NO way to know. And no lab has the ability to do that now.

I have more info to share with his Doctor and a few more things to try. But with the way he responds to things that are supposed to help, who knows what will happen?

We have never been afraid of what we can't see, but it sure does piss us off.

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Another new baseline

>> Friday, August 1, 2014

The thing about Bug is the amount of baseline changes he has. It's off the hook and on par with severe epilepsy diagnosis, which he doesn't have.

The latest is seizing as soon as he falls asleep. I mean, within 10 minutes. He used to do that when he was 4. NOT a pattern I want to see again.

Add to that: this morning he is sitting at 3 seizures in 90 minutes. And two days ago he ended the day with 5 seizures, it's not a good baseline.

So we ask: What is different? We added Vimpat.

I am not willing to say it's the Vimpat, I am willing to say that it may be a combo of the Vimpat with the Lamictal. Those may be two medications that, when combined, hinder the sodium channel a little too much. Meeting with the good Doctor next week, so we will hold steady for now. He is acting weird as well, but there has been some sickness going around so maybe that is a contributing factor.

He does have his Hemp card and I did NOT Blog about getting that. Mostly because I was recovering from nose surgery and didn't turn on my computer. It was a hell of an experience and I will catch up on that. But for now, I am making sure his nose doesn't drip too much blood from the second seizures in the kitchen this morning. Days like today and his being able to walk really does suck.

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Early evening update

>> Monday, June 23, 2014

Two seizures in an hour.

Where do we think Vimpat will end up? :(

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The rough road of new medication.

Some people may find this weird, and unless you have walked that 500 miles in my shoes you may not understand the reason for the new medication when the CBD Oil I fought for is on the horizon. Well, let me detail a bit:

Bug has a folate autoantibody. Boo Hiss. Folate is VERY important to our day to day operations as human beings. ANY folate he gets can be rejected in spectacular ways. Any folate his body produces gets partially rejected and definitely misused. He has to take an analog folate supplement to ensure he gets enough folate to his brain. It crosses the blood/brain barrier so rapidly, his body does not get the chance to reject much of it. He is doing VERY well on it VERY well indeed.

BUT, his number one medication that has helped him, blocks folate binding. Oh goodie. The Lamictal BLOCKS folate. So although it reduces his seizures (GREATLY) it also makes what cause the seizures worse. So we are treating him with one thing that makes treating him with another not as effective. It sucks.

We needed to change the Lamictal. Vimpat is our choice.

Vimpat also is a sodium channel drug. It has similar properties to Lamictal but without the folate issue. Over the last 2 weeks we have been bringing up the Vimpat.

It has be sucktastic at times and interesting.

Starting dose: 50mg at night

His vision was funky. We know this because he was squinting and turning his head a lot. Two hours into the med, it seemed to stop or he adapted, either way, it got better. He still had a few seizures, one after the medication. Bummer.

The next week we upped him to 100mg a night. Again, the vision issue returned and again, it disappeared. He was still having seizures but they weren't any worse and his vocalizations stepped up. Happy humming for a week now.

Then, he accidently got a 100mg in the morning and it was a pukefest. Zofran and reduction of Vimpat later, he was OK by that evening. He did NOT get any that evening.

But the next morning, Daddy gave him a full Vimpat. And true to form, Bug puked.

So two days ago I kicked everyone out of the medication dispensing and got him stable on 100mg in the evening again. Last night, he had his 100mg of Vimpat and everything else and still had two seizures after administration. Not cool.

Today, he had a 50mg in the morning (a day passed his regular bump up) and the Lamcital, Luecovorin and Zofran.

He is cheerfully humming and spinning and sitting on me. I have one of his long legs over my arms as I type, one leg on my leg and he keeps looking at me and smiling alternating watching SpongeBob.

I have not seen any seizures today so far. Knock on wood.

We sit stable at:

Morning -

200mg Lamictal
25mg Leucovorin
50mg Vimpat
b12
Calcium Phosphate
4mg Zofran

Anxious to see how he does tonight. Fingers crossed.

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After the anger.

>> Thursday, May 15, 2014

Yesterday's rant needs a follow-up.

And follow-up there was.

Bug had a seizure that threw him into the kitchen counter. The bad part (aside from the seizure itself forcing his head onto the hard counter) is that, in this house, the counters are unfinished. They are not rounded or blunted but rough and when he hits it, it scrapes his head. So this time...big goose egg with patches of scratches.

IT SUCKED. And it stayed large all day. Hoping that it reabsorbs somewhat tonight but not looking good so far.

So that's the seizure follow-up now for the 'other'.

The Department of Health sent us over their rules. Mostly...good. Only ONE issue that we had and we are addressing that. So, no matter how much headache it is to them, they are doing it right and it will be great for anyone else that petitions to expand the program.

Those few Doctors that are saying: Not bad enough...are few indeed but they are also misunderstanding the criteria. The ones that supported us, still support us and even more have come forward. It's very exciting and I need to stress that. We have two new Doctors that have said: I support this and would love to be involved. And they are NOT paid by PCH so that's a great thing.

I need to point out to my families: Stay the course! The rules will be public soon and everyone can provide input, and our Doctors that are suspicious, or that have jumped to conclusions, can see the due diligence that is in place. Yes, even for something more harmless than an aspirin. So even though you are hearing NO now, they are wrong and hopefully, they will realize it in the next few weeks, if they don't, there are Doctors out there that DO understand the law and the benefits of the Oil.

A BIG change is coming not just for Cannabis in Utah but also for epilepsy in general. I say to the medical professionals: Keep up or you will find yourself doing more crossword puzzles and less unlocking the mysteries of my child's seizures. Was that too subtle? Try this:

Read the paperwork or you're fired.

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Your job sucks? Really?

>> Wednesday, May 14, 2014

This morning, Bug slept in. It happens. Not often, but it does happen. We have cameras in his room, Tay's room, the living room, a few places, so we can track him. This time, the movement alert in his room took a long time to route to my email. So I heard the: THUD, before I received the email that he was moving around.

I ran upstairs to find him in full convulsion. Tonic/Clonic, gagging and moaning.

Once I knew he was coming out of it, I began to get really angry.

Lately we have heard that Neurologists are telling their patients that they can't have access to the oil because their condition isn't severe enough. The little girl that isn't 'severe enough' is ONLY 6! She is having Complex Partial seizures multiple times a day, but they aren't showing up on EEG. Doctor's have seen her have them but she 'isn't bad enough'. So...we are supposed to wait until she is? Because she will get there and we all know she will.

I watched my boy slip away from me. I watched him stop dancing, stop playing with his sister, shaking hand with people and stop even LOOKING at people. I watched him struggle to walk, struggle to smile and forget who I am. THAT is how bad she has to be? That lively, happy, energetic little girl has to drool, get 8 sets of stitches in a year, her Mother has to be looked at sideways when she takes her into the ER to get those stitches, she has to lose all that she was, so she can try something more harmless than WATER?

And then we hear how some Doctors and the Utah Department of Health are really struggling with this.

REALLY?

Struggling with WHAT exactly?

Struggling with repressing the fear that when you tuck your child into bed, you will be burying him a few days later? Repressing that feeling so you can just eat breakfast without crying. Struggling with opening his mouth and making him swallow something you just signed a waiver saying it's OK if it makes him blind? Or kills him outright? Struggling with finding a babysitter so you can go out with your husband that you haven't been ALONE WITH in over 5 years only to realize that you don't trust most babysitters to take care of him the way you do, to make sure he is safe? Relying on your family to watch him, your 70 year old parents who would do ANYTHING for him and go to bed, tired and hurting so they can spend what precious time may be left. Struggling with getting punched in the face, nose broken, chin bruised because of myoclonic seizures while he was holding a plastic toy. Struggling with feeling like a failure because you don't give your other children the same amount of time that you do your child with epilepsy? Struggling with your new baby's first word being seizure. Struggling with watching him slowly slip away and die for NO KNOWN REASON?

Until you struggle with those things, I really don't want to hear about how tough YOUR job is, I want you to DO your job so my child doesn't die.

And Doctor, do NOT tell my Mother's and Father's they have to wait until their child is as bad as my child. It's this damn simple, get ready, THIS SIMPLE: If the person is STILL having seizures and they have tried 3 treatments that have not worked sufficiently, sign the damn form and let them try it. DO NOT try to quantify the severity of their condition when just ONE seizure can kill them.

And the next time you have a meeting...invite me. Invite a person WITH EPILEPSY to talk about THEIR treatment options, because until you do THAT, you are not actually serving the population you claim to be protecting. You are playing God. And...we don't play that way.

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How long is 4 minutes?

>> Monday, May 5, 2014

In our world 4 minutes is life-threatening. And Bug, who had been doing so well since we removed the Clonazepam, has been having one or two big T/C's every so often the last few weeks. Last night was the biggest yet.

It sucked.

He was sleeping peacefully next to me after a bath, and I was getting ready to carry him upstairs when he locked up. Hard. He grimaced, he moaned as he was trying to fight it and then, he started convulsing and not making a sound other than gasping.

I haven't seen one like that in a very long time. While I hated it, I have to ask: Is one big one better or worse than 5 smaller ones?

Hope is pretty close to gone at this moment in time, who knows, maybe we will find some later this year, but right now...

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Waiting for his smile.

>> Friday, April 4, 2014

Every so often, no matter how many seizures one sees, there is one, out of the many that affects reason.

Tonight, Bug had one of those.

It wasn't particularly ugly, it was 2 minutes, he was fully Tonic/Clonic and it took him a while to recover. This has happened THOUSANDS of times.

But tonight, it took all my strength not to scream and cry. I sat, holding him, our eyes locked, remembering.

Remembering Bug, minutes old, crying and so small. First time Mom, oldest child, so special in so many ways, and I thought: Did I do this to him? Did something I did, or didn't do, contribute to these horrible moments. It's fleeting, we all do it, and we all know to dismiss it. It is what it is and it sucks. But no amount of blame or excuses makes it anything other than what it is: The enemy.

I remembered watching him with wonder. Dreaming about his future, his life, his energy, everything about him was so amazing. He walked early-ish, his development was advanced, he glowed with beauty.

He still glows, and he still smiles, and then he spends HOURS twitching and trying to get back into the reality of his life. He fights and he ALWAYS wins. But those moments when he is without himself, those moments when he is caught in that seizure, those are so difficult to accept. His normal, his seizing, does not slow him down much, he gets up and keeps going...I ponder and I plan and I yell at the universe for taking him from me. Sitting in front of me, for those few moments when he is gone, they should NEVER be. He should NEVER feel them. And yet, he does. And we do.

Tonight, that not-so-unusual seizure...pissed me off. Made me cry. Made me hate. And made me resolute. But mostly, it made me very aware that I am his Mom and I am his comfort and I am his biggest advocate.

It's been 30 minutes and I am still waiting for his smile.

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Because he's awesome!

>> Tuesday, April 1, 2014

In the course of reading more stuffs about treating the Autoantibody Bug has, and the Cerebral Folate Deficiency that comes along with it, I found that children like Bug need HIGHER than average doses of Leucovorin.

He was taking 25mg 2x a day and we like the results. A lot. We like them a lot. But still, his last lumbar puncture showed his MTHF was on the lower end of normal, and that was a year ago, before his growth spurt (some of his pants are actually too short now! We haven't had to buy new pants in two years!). I read about a 30lb 3-year-old taking 60mg a day and thought: time to up Bug.

I called to get an appointment with his Pediatrician.

Dr. Spencer is fantastic. He is just fantastic. He reads everything I bring him and doesn't always agree with me. He studies and has applied Bug's diagnosis to other children and the Leucovorin is helping! He's just awesome.

I went to see him, and he agreed: let's up him by 25mg more. Why not? So we did.

Today.

Today he got 75mg instead of 50mg. And he was chirping, humming and smiling all night. It was great.

Now, it takes some time to build up, so one dosage increase will help a little but the true results won't be known for quite some time, upwards of 6 months or a year. This is the joy that is Mitochondrial Dysfunction: It takes time for treatments to REALLY be effective.

We will wait, and we will watch and we will stay the course. Maybe we might try the Cannabis Oil, but in the meantime, this may help him and Dr. Spencer agreed. Because he's awesome! Just like Bug.

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Safety as defined by others

>> Friday, March 28, 2014

A little while ago, I was sent a link about a new opioid painkiller (because we don't have enough of those). It's an extended release hydrocodone and "It will be available in doses as high as 50 milligrams per pill -- five times the amount in immediate-release hydrocodone pills. Even though it is meant to release hydrocodone slowly over 12 hours, the pill could be tampered with to release a large dose all at once, says Andrew Kolodny, MD, co-founder of the group Physicians for Responsible Opioid Prescribing." 

I was linked to this, but I did NOT expound upon it at the time:

http://www.webmd.com/pain-management/news/20140226/new-painkiller-zohydro-criticized

"Two members of the FDA’s controlled substance staff warned about the potential for abuse in materials presented to the advisory committee. “If approved and marketed, Zohydro ER will be abused, possibly at a rate greater than that of currently available hydrocodone combination products,” wrote medical officer Lori Love, MD, PhD, and pharmacologist James Tolliver, PhD."

But at least the makers are trying to make it harder to abuse (read that sarcastically):

"
The company is also taking other actions to lower the risk of abuse, according to a statement supplied by Normart. These include locking pill bottle caps and an external “safe-use board” made up of experts in abuse, misuse, and diversion."


Really.

"According to the FDA-approved labeling, Zohydro is "for the management of pain severe enough to require daily, around-the-clock, long-term opioid treatment and for which alternate treatment options are inadequate.” The manufacturer can’t market it for other uses, but doctors are free to prescribe it to any patient they deem appropriate."

Charming.

Then I read the FDA's press release about it:

http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm372287.htm

In their own press release, the FDA admits that complete safety testing is not in place but:

"The FDA is requiring postmarketing studies of Zohydro ER to assess the known serious risks of misuse, abuse, increased sensitivity to pain (hyperalgesia), addiction, overdose, and death associated with long term use beyond 12 weeks. These studies will also be required for other ER/LA opioid analgesics."


POSTMARKETING studies! Surely I read that wrong. According to so many opponents, the FDA never allows ANYTHING in this day and age, onto the market without complete studies. Huh. Curious.

But, the most frustrating thing in the first article, and only because we had heard over and over again about the safety of the CBD oil we want to try with Bug, is this exceptional statement:

"I firmly believe that the benefits of this product outweigh its risks," the FDA’s Bob Rappaport, MD, wrote in the summary review explaining why he approved Zohydro last October. Rappaport is director of the FDA's Division of Anesthesia, Analgesia, and Addiction Products. "Many patients in the U.S. suffer from untreated or poorly treated chronic pain. Further limiting access to potential treatments is not the answer when new treatments are critically needed.”


I once spoke about weighing the benefits and the risks whenever we give Bug a new medication. I explained that NO medications are harmless, even ibuprofen can be deadly. But there is NO such thing when it comes to this oil. Even if we look at its more psychoactive cousin, we see; a lack of motivation, psychosis in later life, and a few other side effects that DON'T SAY DEATH in the description. But this oil, this extract does NOT have that compound in it in abundance. 

In fact, it has so little in it, one Doctor Representative said: 'That's trace! You can get more by brushing against it. I have no problem with this'. He then did a 180 in session and asked us to limit this to 'prevent' abuse. So...we are worried about abuse now? We saw him talking to members of the SMART Coalition of Utah County.

This same Coalition is now claiming to OWN HB105. Own as in: They made the changes to ensure that ONLY people with intractable epilepsy can have it. THEY made the changes to ensure that it has quantifiable and measurable standards (even though the Oil Manufacturers ALREADY DO THAT). They claim that THEY forced us to compromise to keep people safe from this dangerous oil...this oil that is SAFER THAN IBUPROFEN.

Why this rant? Because while they were spending ALL of their resources on this extract bill, while they were calling in people from outside of Utah to do presentations about houses being blown up while people are extracting from marijuana, while they were parading Gallup Poll's as legitimate research, while they were saying: Sorry about your children but we have to think about the children (NOT an exaggeration) they did NOT ONCE post about or take a stand against Zohydro.

NOT once and still haven't.Numerous Doctors have called for the FDA to pull Zohydro, but the SMART Coalition....didn't. 

So I ask you: were we the best use of the 100K they get annually from the Federal Government: Trying to keep an oil with NO side effects from people? Or should they MAYBE have read about Zohydro and taken a stance on THAT. 

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Yea, about THAT

>> Monday, March 10, 2014

Bug is doing well coming down from Clonazepam. Before now, we could NOT get him lower than .25 twice a day. Last night, was the first night in almost 4 years that he did not have any. At all. None. And no lip smacking, no twitching (more than usual), no dry cough and no sleeplessness. It took us 2 months at the slightly lower dose of .125 twice a day to get him to this point.

Here's the kicker:

NO INCREASE IN SEIZURES!

Hooray! VERY exciting.

Now that is out of the way I must address ONE thing, this statement:

You are being shortsighted and selfish.

In regards to this bill, we are being told daily, that we are being selfish for JUST getting it for our children.

Here's my response:

You have NO clue what you are talking about.

Jennifer's Mother died in January, died from cancer. Cancer that has been KNOWN to respond to CBD. CBD, not THC. There are studies, not just people who like to smoke, saying: Hey, this helps. STUDIES.

My Dad, has a dementia diagnosis. Dementia, which has been KNOWN to respond to CBD. There are STUDIES.

So DO NOT tell me I am being selfish. We were motivated to get this for everyone. Don't you DARE criticize me and make that BS statement. You DON'T know.

And until you get out from behind your keyboard, until you organize and stand up and go to the Capitol EVERY DAY, until you reach out to reasonable people for assistance, until YOU did that: Shut up. Just stop talking. You have NO right to complain about what *I* didn't for *YOU*, who is doing nothing for yourself but complaining about what YOU can't get delivered to your satisfaction. Just stop, you selfish, whiny, self-important, arrogant turd.

There. I feel better.

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Now THAT'S some argument...

>> Sunday, February 23, 2014

I have to do this. HAVE TO. It's long, sorry. 

We have heard so many incredibly circular, hypocritical and down right DUMB arguments against the treatment we want for Bug. I have to list them...and the truth of course. Not MY version of the truth just THE truth. You'll see.

Marijuana is bad.

Ok...I'll give you this one. Show me ONE study that supports Marijuana INCREASES productivity.  I prefer to not sit around and stare at fruit but I DO NOT condemn those that do. Their choice. I don't do it, never have and never will. Free will. Don't harm anyone and I won't slap you.

This is Marijuana.

Nope. Sorry. That SLANG was promoted and subsequently accepted as fact in the Tax Act of 1937. There IS no Marijuana Plant. It is ALL Cannabis . Since it is ALL Cannabis we must turn to the law to define the difference between Hemp and the psychoactive plant. THAT comes into play with the 9th Circuit Court of Appeals and the Hemp Industries Association in 2004 which states:

"[T]hey (DEA) cannot regulate naturally-occurring THC not contained within or derived from marijuana-i.e. non-psychoactive hemp is not included in Schedule I. The DEA has no authority to regulate drugs that are not scheduled, and it has not followed procedures required to schedule a substance. The DEA's definition of "THC" contravenes the unambiguously expressed intent of Congress in the Controlled Substances Act (CSA) and cannot be upheld"

Based on this ruling, the DEA began to issue exemptions for Hemp grown outside of the United States. Or so we hear. Either way, Hemp importation has continued and occasionally, tests are run on some of the products to ensure they have very low THC, but not every batch, and not every country. The DEA admits that the courts are contradictory in this regard making enforcement extremely difficult.

Enter the Agricultural Act of 2014. Which defines Hemp.

"(2) INDUSTRIAL HEMP.—The term ‘‘industrial 

16 hemp’’ means the plant Cannabis sativa L. and any 
17 part of such plant, whether growing or not, with a 
18 delta-9 tetrahydrocannabinol concentration of not 
19 more than 0.3 percent on a dry weight basis. "

That pretty much ends that, doesn't it?

It is not safe.
This is baffling. Truly. It's psychoactive cousin has NEVER been blamed for a death, stupidity, yes, deaths; no. And as far as the 'long term side effects' CBD itself has been shown to have NO impact. High THC exposure does, but NOT CBD. Do you doubt this? Well, you might, if you weren't researching the HELL out of it to ensure it will not hurt your child. But if you actually DO THE RESEARCH you find this very interesting study .

Which brings up this: IF it is not safe, as claimed, why, based on everything that is holy, would you want us to give our children a HIGHER dose? Even under an FDA program? That would be reckless wouldn't it?

But since you bring it up...are any of the AED's my son has already taken, safe? EVERY Doctor that we talk to admits: no. And yet, they STILL bring up that this isn't safe. It has a better safety profile than ANY AED. Please, stop saying that. Read the research before you speak, please.


There is a Pharma product, you should use that.
Yep, we wanted to. We can't. It is not available to us. And until I am contacted by a Doctor running one of their programs and told MY SON is enrolled (he is signed up for 3) then it is NOT an option, is it? Which would mean, he has to wait at least 3 years and not the 5 months we are looking at waiting. And we come back to: IF it is not safe, as claimed, why would you want us to give our children a HIGHER dose?

You are asking the legislature to regulate a drug or be involved in healthcare.
Again: this is not a drug. This is a Hemp product that has been confused as a drug. You can not patent a plant. That would be like taking a patent out on a tomato or potato or asking the legislature to let you eat the tomato/potato. It's legal to eat the tomato already, we just want to make sure that because you can make the poison nightshade from the tomato plant that we won't be arrested for possessing it. 


Tomatoes are from the genus Solanum L. - nightshade 
http://www.itis.gov/servlet/SingleRpt/SingleRpt?search_topic=TSN&search_value=521671

And as for the healthcare statement: We are asking you to STAY out of it. MY son's Doctor, the specialist, the researcher, the man that EVERY other Doctor in the State and out of the State that my son sees, defers to for his epilepsy treatment, supports this. He wants to treat his patients with this.  He is completely on board. Doctors have different opinions but to say Doctors do NOT support this is just simply not the case. They do, just not SOME Doctors, but they are NOT the specialists he needs so they are not important to his care and need to stay out of this. They don't stop by and provide input when he is in the hospital in Status. When he is in Status, I don't see them jumping up and down to get involved in his care. So why now?


We are asking the legislative body to run an IRB study or give UofU permission to do so:

The UofU has studied over 35,000 products without the permission of the legislature. They have already initiated the process to be able to research, on mice, under IRB guidelines. They do NOT need legislative approval and are not seeking it.

The UofU is ready to test on Humans.
We just heard this one. We were told, in committee, that an important text message was just sent and it said: Dr. White is ready to test on humans. Now, I happen to know Dr. White and we just spoke with him on the 12th of this month. I was testifying when this comment was made and I had to correct: Dr. White does NOT test on humans and he has asked to research this in mice and rats and they are working on getting that set up. Our legislative team is helping them do that. We want the studies. It helps ALL of us to research this. And we are the BEST population to be a part of the studies. It shows promise, our children NEED something different, and we are VERY used to keeping detailed records. BUT they are NOT testing on Humans at the UofU...unless they let us have this, then they will be, won't they?

GW will file a lawsuit:
The product would ALREADY violate patent law and GW would ALREADY be filing cease and desist notices to the Realm of Caring. GW has over 100 Million Dollars to spend on development for Epidiolex, I am sure they can afford a patent attorney. No, we will NOT be sued if Realm of Caring is not ALREADY being sued, it's not as if the product infringes on the patent by GW in Utah but not Colorado.

There are more, but really? Do you want to keep reading? And tell me...are any part of my responses NOT true?

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Divine?

>> Friday, February 21, 2014

As my Bug continues to stumble into walls, drool and refuse to eat I am getting more and more impatient with the nonsensical reasons some are giving to not support the use of High-CBD/Low-THC.

They are not seeing MY son.

They are seeing all things that are not yet real, are not yet tangible that may not come to pass. And they are thinking of themselves and themselves only. It is baffling and very disheartening.

They are saying things like: You have to think of the children.

Huh?

I want to correct them: No, what you mean is you have to think of the TYPICAL, HEALTHY children.

They say this because it is automatic for them, the ones who say it say it all the time to get what they believe is right for the children THEY represent. But I can say it to, and have. I say: Oh but I AM thinking of the children...the forgotten ones. The ones who make you nervous, the ones you would rather not see. The ones that can't say no, the ones that will die sooner than they should. I AM thinking about those children, are you?

Bug is no longer smiling randomly, he is not running, he is just looking like he is ready to fall over and quit. But he won't quit. It isn't in him to do that. This child is strong, very strong in constitution and physical prowess. If he wasn't, he would have died in 2011. He was close a few times, but he didn't give up and neither will I.

We heard a legislator say this was a moral dilemma for him. Really? I mean really?

YOUR Morals have NOTHING to do with this. Unless you want to use it as an excuse. Want to know why? Hold on to your moral compass because here we go:

Morals:

"a person's standards of behavior or beliefs concerning what is and is not acceptable for them to do."

YOU aren't doing anything to compromise your moral standards because YOU aren't giving YOUR child some of the most overdosed drugs in the nation. YOU are standing above it all imposing YOUR value system on a child that doesn't need you to balk at giving him the chance to have a treatment that won't kill him. MY moral structure is what is in play here. I am the one giving him these destructive and addictive medications and you know what: I believe God sanctions my actions.

People tell SN Mom's all the time how they are blessed to have such sweet spirits in our charge. How God gave them US because we are the chosen.

Until now? Now, I am being selfish and ignorant of the harm I could do to my child. I laugh. Either God trusts me with Glenn or he doesn't. You can't have it both ways.

I believe, that this treatment was divinely inspired. And I am NOT the only one. Many good Christian families have prayed long and hard about this and their prayers have been answered: The KNOW that God wants their child to have this. Those people, so close to God because they are the caretakers of his special spirits, have prayed and they KNOW that this is right and they KNOW it is acceptable.

So, unless you are putting yourself above these families, above my son, above my relationship with God and above Brigham Young himself, who said: "seek out the places most suitable for flax and hemp and there let them be grown." 1861 (This is a commandment) Journal of Discourses 9:34-35" then you should have NO moral issues with this.

EDITED: Oh, and you know those kids that you ARE worried about, the ones that should have their OWN moral compass, the compass not based on whether or not my son takes Valium or not? Ya, I have three of those too. And I tell them: If it affects your thinking, if it alters your personality or your value system, don't take it. It will eventually destroy the person you want to be and an heir to ancestors that came before you. You be YOU and not a chemical you.

My 8 year old asked me:

Why do people do drugs?
I said: because they don't like who they are, for whatever reason, and they want to try to feel better. But, answer me this: Will they still feel better when it wears off?

Tay: No. So it makes no sense does it?

Tay: Nope unless your Bug. He takes medications to help him.

See? She GETS THE DIFFERENCE!

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What I have come to realize...

>> Friday, February 14, 2014

Throughout this legislative advocacy, I have learned a few things:

Relationships are fickle things that can be made and unmade based on opinion and perception.

Truth is not as important as hype.

My son is STILL being overlooked.

He is NOT as important as public perception, even though that perception is a lie.

The medications he takes to stop his seizures are the number one cause of an overdose trip to the Emergency Room. Get that one? Benzo's...not CBD. If one more Doctor tells me that it is unsafe and needs to be studied, I swear to everything I will unleash an unholy tirade designed to destroy a human being. http://www.cdc.gov/homeandrecreationalsafety/overdose/facts.html

There are members of the House that do NOT care about their constituents and would 'have to think about' whether or not they would actually give their child an antiepileptic drug let alone High-CBD/Low-THC. Yes, that means they might just let them seize until they die. True story...to my face.

What good is air quality if my son is not breathing?

There are some really beautiful people in the world.

Ugliness is sometimes wrapped in Prada and has an MD.

Lies are only as good as people are willing to believe.

In Utah, people will believe anything wrapped in expensive paper.

Death...is NOT a motivator but greed is.

The people that say I am being selfish...want something for themselves.

There are some beautiful people in the world.

We have a great Doctor.

I have some fabulous friends.

The community DOES care about Bug.

I am a natural cynic.

BUT

There are some really beautiful people in the world.


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Prevention?

>> Monday, February 10, 2014

I awoke this morning with a clarity of purpose that only a night like last night can provide. Bug had a MASSIVE seizure that cancelled everything we were doing: celebrating Papa's 71st birthday mostly.

It was an ugly, ugly, ugly one and took him a long time to come out of it and fully recover. I, on the other hand, may NEVER recover. He almost got Diastat.

But, the extra Clonazepam, (remember that one? The one with these lovely side effects: http://www.rxlist.com/klonopin-drug/side-effects-interactions.htm) helped him and he slept well.

Until 7:45 this morning when he had another large seizure.

Before that seizure I woke up thinking: the prevention people attacking this cannabis product we want to try have NEVER been in this type of battle before. Do they know what they are actually doing? I don't think they do. I think they are being used to forward another monetary agenda.

Before, they were preventing, or attempting to prevent, because from my perspective an increase in Heroin use in Utah is a failing grade (And how are these kids getting it? It's...it's illegal!) prescription and illicit drug abuse. Hopefully, preventing death. Because isn't that the goal? Keeping people alive? Or do I miss the point of preventing drug abuse?

NOW, they are working to 'prevent' a life saving treatment. Their 'opponents' this time aren't drug users that are seeking solace in running away from the world by using mind altering drugs...no this time, they are attacking Mom's who have been told their children are very sick and dying. They are attacking a Parent's right to administer an oil that has been PROVEN to be effective in saving lives. THIS time they are preventing life.

Let's look at their argument, shall we?

Insult number 1 - we aren't being smart
They are telling us that we need to be smart about this. That our emotions are getting in the way.

Nope - our emotions are in check. Otherwise you wouldn't have a leg to stand on. Literally...we would be ripping your legs off. And even if they weren't; does that make our need less factual and important? We aren't being smart because we don't agree with you on this one? Get in line, I don't agree with a lot people when it comes to the treatment for my son. Doesn't mean I am not being smart, it means I am thinking for myself.

I have witnessed over 10,000 seizures and I am on the low end of some of these parents who children I am trying to help. We KNOW seizures. We KNOW them. And we know the effect they have, how serious they are and how we must do everything to stop them. In the course of trying to stop them, we research, and we talk to anyone and everyone who has ANY insight and we cull the information that is valuable and disregard the rest. We do not sit around and wait for science to catch up with our need. We make it happen. We stand in front of 'experts' with 150 pages of printed research that we have read back to front and highlighted the pertinent sections. Saying we are not being smart...ya that's a stupid approach.

Insult Number 2 - You should wait for the IND or I do not believe that your child's situation is that dire - i.e. your lying
They are telling us we should wait for the 'safe' alternative which, just so happens to be a Pharmaceutical product which JUST started human trials. Although, it did receive Orphan Drug status...without actually BEING a drug. What do I mean? It had ONLY ever been tested in animals when the FDA gave it Orphan Drug Status. That's like recognizing that my big toe has food value because Aiden bit it the other day. Really?

This 'safe' treatment is 14 months behind the Alepsia/Charlotte's Web administration. Time is of the essence and this 14 months could mean the difference between life and death, between knowing the alphabet and relearning the alphabet, between walking for the first time and needing a wheelchair, between knowing what a nissen tube is and eating a cookie. Curiously, they are not saying CBD ISN'T beneficial anymore, they know that if they did, the argument to make us wait for Epidiolex is mute and has no merit. It would telling us to wait for a vial of coconut oil.

Every Doctor I know says that the AED's Bug takes are dangerous and to be avoided. Truly.

Insult Number 3 - We are a front for another purpose - legalizing Medical Marijuana
What? Just what? If I wanted to give Bug Marijuana I would go to Lone Peak High School on one of my many McDonald's run and pick it up. I wouldn't tell anyone in the State Legislature about it and I wouldn't be working hard to get people to have it so they can abuse it. Show me ONE research study that says Marijuana increases productivity. Not interested in higher THC than needed...and it seems to be just enough to activate the other compounds that are proving to be effective. I give him enough legal mind altering and dangerous drugs by prescription, I don't WANT to give him any more. So, say this again to me...I dare you.

Insult Number 4 - This is about making money
They are telling us that The Stanley's are millionaires who are only it in for the money. Um no. They are making just enough money on this to continue making it and they are working with people who can't afford it to be able to afford it. The ONLY people making MILLIONS at the moment is the Pharmaceutical Company that they are promoting. This is where it gets SUPER fun.

They are a publically traded company as of 'May 2013 raising total net proceeds before expenses of $30.7m (£19.8m)'. In June of 2013 their stock was worth $8.46 per share. Now, it sits at $61.46. Exactly WHO is making money off of our misery?

I could go on but the point is really this:

It has NO public safety concern.
It is NOT smoked.
It is NOT Marijuana...wanna see?

OK:

SEC. 7606. LEGITIMACY OF INDUSTRIAL HEMP RESEARCH.

2 (a) IN GENERAL.—Notwithstanding the Controlled

3 Substances Act (21 U.S.C. 801 et seq.), the Safe and

4 Drug-Free Schools and Communities Act (20 U.S.C. 7101

5 et seq.), chapter 81 of title 41, United States Code, or

6 any other Federal law, an institution of higher education

7 (as defined in section 101 of the Higher Education Act

8 of 1965 (20 U.S.C. 1001)) or a State department of agri-

9 culture may grow or cultivate industrial hemp if—

10 (1) the industrial hemp is grown or cultivated

11 for purposes of research conducted under an agricul-

12 tural pilot program or other agricultural or academic

13 research; and

14 (2) the growing or cultivating of industrial

15 hemp is allowed under the laws of the State in which

16 such institution of higher education or State depart-

17 ment of agriculture is located and such research oc-

18 curs.

19 (b) DEFINITIONS.—In this section:

20 (1) AGRICULTURAL PILOT PROGRAM.—T he

21 term ‘‘agricultural pilot program’’ means a pilot pro-

22 gram to study the growth, cultivation, or marketing

23 of industrial hemp—

24 (A) in States that permit the growth or

25 cultivation of industrial hemp under the laws of

26 the State; and

1 (B) in a manner that—

2 (i) ensures that only institutions of

3 higher education and State departments o f

4 agriculture are used to grow or cultivate

5 industrial hemp;

6 (ii) requires that sites used for grow-

7 ing or cultivating industrial hemp in a

8 State be certified by, and registered with,

9 the State department of agriculture; and

10 (iii) authorizes State departments of

11 agriculture to promulgate regulations to

12 carry out the pilot program in the States

13 in accordance with the purposes of this

14 section.

15 (2) INDUSTRIAL HEMP.—The term ‘‘industrial

16 hemp’’ means the plant Cannabis sativa L. and any

17 part of such plant, whether growing or not, with a

18 delta-9 tetrahydrocannabinol concentration of not

19 more than 0.3 percent on a dry weight basis.

(3) STATE DEPARTMENT OF AGRICULTURE.—

21 The term ‘‘State department of agriculture’’ means

22 the agency, commission, or department of a State

23 government responsible for agriculture within the

24 State.

That bad boy was signed into law on Friday. It IS Hemp. So there. Shut up about that already.

It has NO addictive properties.
It will NOT open any door because it is a nutraceutical and needs to be recognized as such.

This time, the game is more than stopping people from having a 'good time' in their own home, or preventing DUI related injuries and death...no this time...prevention MEANS death and decline. Prevention is not prevention this time. It's senseless tragedy.

Oh and it's not a drought year either.


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Exactly who's child is this?

>> Saturday, February 8, 2014

On October 25, 2005 I lost ANY control that I might have had over the life of my son. For most parents, that happens when their child becomes a teenager and exerts their right to freedom. Freedom to make their own choices, good or bad and hopefully deal well with the consequences of their decisions.

For me, he was 2.

At the age of 2 he had his first seizure and so began the next 9 years of hearing:

It's very unfortunate to see.
It's just Autism, I can stop the seizures but you will have to go somewhere else for the behavioral issues.
It might just be a case of 'bad brain' and you will have to learn to live with it.

I was told NO for 5 years to the test that ultimately gave us our diagnosis. A diagnosis that, if it had been found earlier, probably would have stopped the deterioration the daily seizures caused and MIGHT have had a different outcome in 2011. He might NOT have been in non-convulsive Status 4 times that year. He may be a different child, with NO seizures. I am not exaggerating.

We trusted the medical community and we still do, cautiously. But I have NOT had real control over the decisions to the health and well being of my child since he had that first seizure. His seizures were made worse by some of the medication we tried. And I had to sign TWO waivers saying that I would watch carefully for a life-threatening rash. As I read the long list of side effects that these medications cause I saw things like: Sterilization, blindness, liver failure, and death. And yet, I opened his mouth and put the pill in. No parent should have to think they may be killing their child while trying to help them.

I still check his skin daily for new marks or rashes. Because even though he did not develop the rash immediately upon starting the medication he still could, at any time. And it could KILL him...in horrible ways. He literally would burn from the inside out.

We repress these possibilities, we do not dwell on them but this legislative endeavor has brought them all forward.

I am STILL turning my son's health over to someone else. A body of 10 people will most likely decide what is best for him.

And I can do very little about it because some are more interested in perception. Seriously...how it appears? THIS is YOUR concern? Pretty heartless and reckless isn't it?

I met a man who said he was speaking for me because I was being taken advantage of in a very stressful and delicate situation. Me? Really?

This man told the legislators this as well. He has a PhD. So they will listen to him. He doesn't care about my son. All the Doctors I begged for tests and denied me, they didn't really care either. And the legislators on Capitol hill don't care. Not really. And they don't care because the federal government called this plant Marijuana before they called it Hemp. And they DID call it Hemp. A few times, the latest time in the Farm Bill just signed into law.

Because of that term, I will hold my breath every morning and hope Bug opens his eyes.

Because yesterday, not only did I meet Mr. I-really-am-helping-you-by-helping-me-build-my-resume, but I met Marilyn. She is a mother to two Daughters that were killed by epilepsy. SHE is speaking for me. SHE gets it. And until the aforementioned man sits by his son's bedside and holds his hand while his heart beats 35 times a minute and he only takes 8 breaths in that same minute, until THEN, he does NOT understand anything about this battle and he DOES NOT speak for me, his very presence insults me and drives a nail into Bug's coffin. THAT is how he is really 'helping' me. By taking away any rights I had in making the decision for his well being.

Here's how you can send the message to Utah Lawmakers:

Like the FB Page - Hope 4 Children With Epilepsy
Go to the website: http://hope4childrenwithepilepsy.com/ and Click on How to Help.

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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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