Tag Archives: Florida

Deal. Real. Before pharmaceutical companies I kneel.

Nathan-DealThere is a very misleading headline floating around that the governor is supporting a bill for medical cannabis. It is not true. Yesterday Governor Nathan Deal dropped the bomb that he will veto a medical cannabis bill with in-state growing. He will, however, sign off on HB1 immediately if it is stripped to immunity only. What this means is that he wants sick people to travel to legal states, obtain cannabis oil that falls within the parameters described in HB1, and break federal law to bring it home. This is what he considers helping the people. Frankly, I’m impressed his hand isn’t too cramped up to sign any bills with all the patting he’s been doing on his own back for talking to GW Pharma about Epidiolex trials, the pharmaceutical version of CBD from the cannabis plant. (Isn’t it funny how pharmaceutical companies can find a medicinal use for a plant that is classified by the government as having none?)

Here’s the thing. Last year Rep. Allen Peake presented HB 885, also known as Haleigh’s Hope for Haleigh Cox. It started out with a plan for growing but got stripped in committee. I won’t rehash the whole ordeal again, but by the end it was also just an immunity bill with no way for people to obtain cannabis in Georgia. It had the votes, but Senator Renee Unterman killed it by attaching another bill that she knew good and well the House wouldn’t hear. Several families were down at the Capitol as the clock counted down to midnight on the last day. They went to Deal’s office to beg him to intervene, but he refused to come out and meet with them. He has said to reporters since then that he has met with the families. Most of the families would love to know who those families were and when because we’ve been trying to figure it out. He could have encouraged an immunity bill through last year but he chose to hide in his office.

He has known all along that there was a plan and a need for growing in the state. By agreeing to immunity only, he is encouraging families to break federal law by transporting it back to Georgia. You can be charged if caught driving through an illegal state or by TSA when flying. Not to mention the expense and challenge of people with serious medical conditions needing to leave the state to obtain it.

Throughout the 2014 election he was asked where he stood. He was vague and always pointed to what a great job he was doing talking to GW Pharma about bringing Epidiolex trials to Georgia. He was quiet as Rep. Peake led a committee during the months between sessions to create the legislation for HB1. He waited until this past Friday to finally be straight about the fact that he has no interest in genuinely helping the people in Georgia that could benefit. For him to not veto HB1, it must be stripped. He claims to want to appoint a committee to look into growing in 2016. Well, what have you been doing for the past year, Gov. Deal? And if he didn’t think Peake’s committee was doing a suitable job, why didn’t he step in? Because that wasn’t the issue. Deal is playing a different game. Meanwhile, people are sick and dying and many aren’t finding relief from traditional pharmaceuticals.

Sen. Curt Thompson has also announced his plans for SB7. It is a more comprehensive plan that is well-received by those who want to see a medical marijuana program in Georgia, but it isn’t expected to have a shot given that it allows so much more than Georgia legislators are comfortable with and is being introduced by a Democrat in a good ole boy Republican legislature.

But what can we expect from Deal, a man who secretively met last year with Sheldon AdelsonAdelson funded 85 percent of the campaign against Amendment 2 in Florida, which would have brought a comprehensive medical marijuana plan to the Sunshine state had it passed. In an amusing twist, Las Vegas casino king Adelson’s other pet project, besides keeping sick people from having more options, is blocking online gambling because “Internet betting could harm children and other vulnerable people.”

The AJC recently conducted a poll that showed 84 percent of Georgians support medical cannabis.

Want to share your thoughts on this subject with Deal? Give his office a call at 404-656-1776.

 

Related reading:

Georgia’s Deal caught up in ethics controversy

Gov. Deal’s campaign pays his daughter-in-law’s firm $600k

 

 

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Connor is a fish.

We just got back from a week in Venice, Florida at Chris’s parents’ house. Since Connor has weekly aquatic therapy, I was hopeful he would enjoy the pool this year, but I honestly expected he’d maybe get in a couple times and be done after 20-30 minutes. Not so. He was in every day with us the whole time. In fact, he quickly learned that once the safety fence was down and at least one adult was in the pool, that was his cue to crawl over, turn around backward about two feet from the edge and back into the water until he hit the step. Aquatic therapy has given him great confidence in the water. Too much actually. He constantly wanted to break free from us and his flotation devices to do his own thing.

It was a great week sandwiched by two crappy seizure days. He did great after we upped his vigabatrin a couple weeks ago, then he had another awful day in which he only had two or three clearly identifiable seizures, but was just off the rest of the day, weak and had a hard time moving. Bad seizure days always wipe out his arm strength, so even if he gets motivated to move, he ends up with bruises lining his forehead. Sometimes his chin takes a hit, too. And once he’s motivated, it’s hard to stop him. We try to keep him on the carpeted areas, but he always gravitates to the hardwood.

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We upped his vigabatrin on Sunday morning and the next several days were great. Then Thursday night he woke us up crying, which is very rare. For the second time ever, he had what I guess would be classified as a partial seizure? One arm was extremely stiff and unmovable. He cried until it stopped. I stayed in the room and slept with him and he had 2-3 more of those that would wake him from sleep and make him cry. He also had three tonic clonics throughout the night. I always thought a partial seizure would be a better type to have because it’s just a body part and you are aware, but instead those seem the worst for him–but I don’t know if he cries because it hurts or because it scares him. So Friday he was rather off and not as energetic as usual, though he did perk up the second Daddy got in the pool and commenced his backward scoot. I slept with him again Friday night, our last night in Florida. He didn’t have any seizures until we woke up to leave, but as soon as he awoke he had a short tonic clonic. I thought he was done, but then I noticed his eyes flitting back and forth in a weird way and his eyelids twitching. I waited it for it to stop. And waited. Chris came in behind me. It kept going. Nobody spoke out loud, but a basic summary of our thoughts is as follows:

Oh my God. This is it. His first status seizure,

We’re not going home; we’re going to the hospital.

I don’t want to have to move to Colorado. Are we going to have to move to Colorado after all?

And just as I think we were both struggling to make the call that it was time to head to the ER it stopped. Not a status seizure, but one of the longest he’s ever had. And if we hadn’t been leaving and turned on the lights, I don’t know if I would have known it was happening. We don’t have a prescription for Diastat (an emergency med), but I think it’s time to talk to his neuro about it. Just in case. We have Klonopin on hand in case of clusters, but he can’t swallow it in a situation like this.

Florida, I’m begging you to get your MMJ program up and going. You’ve passed the oil, and I hope you will pass Amendment 2 this fall. And it goes without saying that if Georgia does it too…

Last night his motivation was present, but not his arm strength so it was a battle to keep him in carpeted areas. I’m happy to report this morning is much better!

Good morning, everybodeeeee!
Good morning, everybodeeeee!

I will leave you with pics from our awesome week in Florida:

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Dirty Banana at Sharky's.
Dirty Banana at Sharky’s.
We borrowed Chris's parents' "fun" car for date night.
We borrowed Chris’s parents’ “fun” car for date night.
Getting hot dog's at Anita's sandcastle.
Getting hot dog’s at Anita’s Sandcastle.

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Checking out the manatee at Mote Marine.
Checking out the manatee at Mote Marine.

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Headed home.
Headed home.

 

 

 

 

Waiting for a seizure to happen is no way to live.

Second Annual “Blogging for TSC Awareness Month” Day 9

by guest blogger Jamie Perry  (Deltona, Florida)

At the end of August 2011, I found out I was pregnant with my second child. My husband Joe and I had been married for 10 years and decided to have one more child so my 3-year-old daughter would have a sibling as we didn’t want her growing up an only child. I got pregnant quickly and we were thrilled. At the end of 2011 I found out I was having a boy. I had no problems during the pregnancy and the doctors said everything looked good.

image-1My c-section was scheduled April 18, 2012. On that day I had a beautiful 8 lb 3 oz boy and we named him Cayden George Perry. He was the most beautiful little thing and I was immediately smitten. There’s just something about that mother-son bond. I couldn’t keep my eyes off of him. The birth went smoothly and ,other than a weird red mark on his forehead, he was perfect. My husband and I asked several doctors about the red mark on his head and they would always tell us it was trauma from when he was inside of my stomach or it was a birthmark or it was a bruise. No one actually seemed to know what it was. No one seemed concerned either. Aside from the red mark on his head, he had several large white patches on his legs and arms. And again, we were told they were birthmarks.

After we got out of the hospital, we saw our regular pediatrician. We again asked about his white spots and red mark. We were told the exact same thing. Everyone felt comfortable guessing but no one could give us a definite answer. They said he was fine and we shouldn’t be worried. At 4 ½ months we figured out exactly what those ‘birthmarks’ were. As a mom, I notice everything. I noticed when I would cuddle Cayden sometimes, his body would stiffen up and he would scream out as if he were in pain. I called the pediatrician several times over the course of a week and each time I’d call, they’d tell me it was likely teething, give him Tylenol and that they didn’t feel it was necessary to see him. I told them I saw no bumps in his mouth but they insisted he was fine and I was overreacting.

After a week of dealing with this, I was extremely worried. Tylenol wasn’t helping and nobody seemed to believe me when I told them I suspected something was wrong with Cayden. I got the “you worry too much” speech from nearly everyone.  On the Sunday before Labor Day, he started having one of the episodes and I yelled for my husband to please take a closer look at him. I knew it wasn’t normal. “I think he’s having a seizure.” Those words from my husband will stick with me forever. He scooped up Cayden and took off to the ER. I got my daughter ready and we hopped in my car and followed. The ER doctor agreed with my husband that Cayden was definitely having a seizure but he didn’t know why. He was on the phone with a neurologist when the nurse came in to ask about the red mark on Cayden’s head and the white spots. We said we had asked several doctors and were told they were birthmarks. At that time, I was so confused. Why was my son having seizures? What could white spots have to do with it? A few hours later, Cayden was life-flighted to a larger hospital an hour away. The doctor felt the  white spots and the red mark were genetic markers for something called Tuberous Sclerosis, which I had never heard of. I made the mistake of looking it up online. I was terrified of what was going to happen to my little boy.

The next day, they did a full body MRI on him and confirmed the diagnosis of Tuberous Sclerosis. They mentioned a drug called Sabril that they’d order for imagehim and they were confident it would be helpful in stopping the seizures. He spent 10 days in the hospital and while the seizures didn’t come as often, they were still happening multiple times a day. Joe and I made the choice to move his treatment to Cincinnati Children’s Hospital. From our research, this was one of the best hospitals to treat Tuberous Sclerosis. We started there at the beginning of October 2012. Much to our surprise, on our first visit there, Cayden was also diagnosed with polycystic kidney disease. It seems the old hospital, while they did do a full-body MRI, never read the results. We had brought the MRI on disc with us for the new neurologist to review and the nephrologist reviewed it as well because after taking Cayden’s blood pressure and seeing it was through the roof, he suspected PKD. My husband and I were devastated. We were just getting over the shock of Cayden being diagnosed with Tuberous Sclerosis and now this??!!! It was just so much to process. They put him on blood pressure medicine and the neurologist made some changes to the dosage of his Sabril. Even at the max dose, Cayden’s seizures still continued. And from that point, they continued another four months until a miracle happened. For four months multiple meds were tried. Nothing seemed to help my son. Watching your son have multiple seizures daily is simply heartbreaking. I sunk into a depression and I dimage-2idn’t think I could pull out of it. I shut everyone out of my life. I was devastated that nobody could seemingly help my son. In January 2013, we discussed Afinitor. The doctor decided to take him off of Onfi (as the side effects were too harsh for Cayden). We began to wean Cayden off Onfi  and we were to start a medicine called Dilantin while waiting to get approved for Afinitor.  After three days on Dilantin, something changed with Cayden. When we woke up on a Sunday morning we heard Cayden in his crib moving around and making noises. I was baffled when I walked into his room. He smiled at me! Then he laughed! And then, of course, I cried! I hadn’t seen that beautiful smile in five months. He was so happy and I can’t describe the feeling I felt seeing him smile. I felt my prayers had been answered.

I felt like for the next few weeks I was waiting for the bottom to fall out. But waiting for a seizure to happen is no way to live. So I tried my hardest to just enjoy the seizure-free time that we got with Cayden. Prior to starting Dilantin, he was set up for brain surgery in April of 2013 at NYU Medical Center. The surgery wasn’t successful and while that was extremely disappointing, I was glad that we at least had Dilantin to help with the seizure control. Cayden just turned 2 April 18th of this year. He’s just learning to crawl and stand, he’s saying a few words and he’s sitting on his own. Six months ago, he was doing none of that. I have such a tough, strong, determined little boy! He is my hero and the absolute love of my life. I am so grateful that God gave me such an amazing child and I feel truly blessed to be his mommy!

Let’s go Georgia…We can’t let Florida, Tennessee and Alabama beat us.

Oh, did you think this post was about football? Then you clearly don’t know me. It’s the SEC of MMJ. And Georgia is losing.

Some Alabama lawmakers ready to legalize marijuana-derived oil that helps control seizures

Article here.

‘Glimmer of hope’ for medical marijuana in Florida

Article here.

Medical Marijuana Bill Filed in Tennessee

Article here.

And for those still hung up on not being able to see marijuana as anything but an illegal drug (even though pediatric treatment is an oil that isn’t smoked and doesn’t get you high), why are you okay with FDA-approved drugs that can do this:

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One of Connor’s meds carries this rare but potential side effect. Read about it here.

Still opposed? I guess you are okay with seeing my baby do this.

Anybody Want to Buy a House?

IMG_3661Connor had a good report from the physical therapist today. She was excited to hear he is pivoting in the sitting position, and he was also much more cooperative in making transitions. We’re at a point where he can maintain a crawling position, rock back and forth in it, and reach out for objects, but he needs assistance getting into it. He’s getting better at sitting back down on his own. He can also maintain a standing position, but needs assistance transitioning into that position as well.

Working on his physical therapy just got a whole lot more aggravating since we put the house on the market this weekend. Decluttering the house meant moving all his PT equipment into the garage. Making myself do PT with him is already hard enough–not because I don’t love spending time with him–but because therapy isn’t exactly what you envision doing with your child when you decide to have one. Going to get something from the garage really shouldn’t be that big of a deal, but that’s me. Not to mention, my attention span has become so awful that a million things distract me on the way and I forget what I wanted.

I spent a good portion of today cleaning scuffs off walls and doors and trying to turn the shower floor back to a non-vomit inducing color. Plan of attack for the shower: Chris laid a coat of Comet with bleach on it at 6 a.m.  and every so often I run some water and re-cover the surface. Twelve hours of this should do the trick, right? This is pretty much the last resort.

A couple did a drive-by on the house and I got down on all fours ninja-style to watch them watch the house. My life is pretty exciting.

Yesterday we got so carried away working on the house, that changing Connor’s diaper slipped our mind for an extended period of time. It wasn’t until he was bouncing in his jumperoo, and the downward motion would cause a cascade of urine to gush out onto the floor from his drenched diaper. I’ve always been grateful that the state of his diaper has never been a source for fussing, but I’m realizing that with my easily side-tracked state of mind, it would actually be beneficial if he’d give me the heads up once in a while. Yes, I really just blamed my baby for over-wetting his diaper.

I’m very rarely seeing any seizures with eye movement, but we’re seeing 1-2 a day in which he slumps down, turns his head to side, puckers out his lips and stares. They last 10-20 seconds, and he snaps right out of it.

Fingers crossed we start getting people looking at the house soon. I really hate making the bed for nothing…

Since I didn’t post much during May due to hosting so many guest bloggers, here are some highlights from the past month:

We went to Florida to visit Chris’s parents.

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Connor went on the swings for the first time. The swing was hot so I finally got to prove to Chris that it IS good to keep “crap” in the trunk.

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Connor rode up in the cart for the first time.

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We watched Cousin Cody play baseball.

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We had coffee and watched trains with my parents in downtown Norcross.

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Seriously, it’s making me sad that nobody is entering my giveaway. You don’t want to make me sad, do you?

You want answers? I WANT THE TRUTH! Well, good luck with that.

December has been a tough month for blogging. I feel like I’ve been going, going, going. That’s even more than I usually feel like I’m going, going, going with a 9-month-old. It started with stressing over trying to get that confounded EEG appointment, then going down to Florida to see Chris’s parents, coming home and checking into the hospital the next day for the EEG, getting discharged in time to start all the family festivities with those that came to town, then Christmas. I was so exhausted I had to renege on plans to hang with some friends at a bar downtown. This after weeks of thinking, “man, I want to go out.” Not that I don’t go out, but I wanted to go out more like I went out pre-baby.

It didn’t help that we went from warm, sunny Florida where it was still summer, and we floated around in the backyard pool with beers in our hand, back to chilly Atlanta, where we immediately had to check in for the stay from hell at Scottish Rite.

Pics from Florida:

A snowman

A pool

A pier

A kiss

A flamingo Santa

A elf

A duck

A crane

A chris and me

So we got all nice and relaxed in time to check in for Connor’s EEG where we could promptly become stressed and agitated. We had no issues with our neurologist. He kept us informed and even let us out a day early as we’d caught several “episodes.” This is our second less than satisfactory in-patient experience. First time was after his brain surgery. The surgery part went great. We love our surgeon and we had a good experience with the surgery department. There were a few issues once we moved to his room though, the primary anger-inducing one being that the day after surgery when he started swelling, he was clearly in pain. His heart monitor kept going off because of it, but nobody ever came to check on him (or for any other alarm for that matter). Don’t get me wrong. I totally understand that every alarm is not an emergency, but as parents, when things go off repeatedly for an extended period of time, we might benefit from a little explanation of what warrants concern. Not to mention, it’s already stressful and then you’re sitting in a room with all this machinery beeping at you obnoxiously. It got to the point where in the middle of the night I just started silencing them myself (after it had been clearly established which ones were clearly unworthy of response). At any rate, we finally asked when his next round of pain meds would be. I stupidly assumed (as I am new to the medical world-my first hospital stay being Connor’s birth) that he was getting them because his skull had been drilled into and his brain resected. “Would you like him to receive pain meds?” was the response. “Ummm…yes. He’s in pain and crying.” The nurse responded, “Yes. I saw his heart rate kept going up on the monitor out there.”

Well, alrighty then. But this was before I read an article that advised to never have surgery on Fridays because weekends aren’t exactly the best staffed, so I chalked a lot of it up to that. Also, before I continue, I want to be clear that it’s not my intention to bash nurses. We’ve had great ones that were very proactive in pushing doctors that were taking their sweet time taking care of business, especially in the NICU, but it’s like any profession. Some are great, some are good, some suck. Because then there was the evening Aunt Donna watched him while we went to dinner and he pulled his IV out, spurting blood everywhere. The boy loves to yank his wires. She was left applying pressure to the bleeding spot until the nurse could return with a bandaid. Good thing it finally quit bleeding because nobody ever came back. We also couldn’t get his med schedule reestablished while we were there becaue every time shift changed, nobody had passed on that he takes them at 8 and 8, so they were coming at all crazy, inconsistent times.

So this time we were there mid-week. I do think he got more attention this time, which was funny because it was just a testing situation. But the meds were consistently late messing up his sleep schedule, sometimes more than an hour. And the most frustrating part is that I don’t want to yell at the wrong person. I don’t want to go off on the nurse, because if they are understaffed, that is not her fault. But with a lot of the stuff that doesn’t go smoothly, you just don’t know where the breakdown happened. I’m particularly uncomfortable in this area because I taught for seven years and I know what it is to have parents let you have it over things you have no control over.

But even midweek, we weren’t issue free. There was the EEG removal and shutdown I mentioned in my last entry. Then came the big one. The second night we were there I noticed Connor’s eye was red and irritated. I thought perhaps that in his rubbing and messing with his electrodes he may have gotten some glue in his eye, so I asked the nurse if there was something that could be done to soothe it. She was uncertain whether it was irritation or an infection so she wanted to check in with a doctor first. Thirteen hours later he finally got a saline flush. (And I had brought up the eye problem twice more). By then it had progressed to goopy, not opening, and him screaming like a bat out of hell when we pried it open. Sixteen hours later after more followups from me, a pediatrician checked him out. He’s still screaming and refusing to open his eyes. Seventeen hours later he got ointment and a swab to test for pinkeye. The swab would later come back negative, affirming that perhaps if he hadn’t had to wait 13 hours for an okay on a simple saline flush, that maybe he didn’t have to suffer the next few days, even after he came home, unable to see us or his toys. Here I thought being in a hospital was the optimal place to be if something like this happened. Who knew we’d have been better off at home and taking him for an emergency pediatrician appointment? Sixteen hours as a patient in a hospital. What happens if you contract MRSA? Does a limb have to fall off?

Headed home after his two-day EEG. Too bad he can't open his eyes to see his awesome hair.
Headed home after his two-day EEG. Too bad he can’t open his eyes to see his awesome hair.

I’ll end my diatribe there. But I will say that I’m the calm(er) one, always telling Chris not to burn bridges. God help any hospital that houses me should I ever lapse into a coma.

There was one thing that led me to feel grateful after this stressful stay. After we were home, a friend posted a link on Facebook  about the passing of a friend’s premie baby. I didn’t know the parents, but as I was downstairs bitching about Connor’s eye, there were parents above us in a NICU I know all too well losing their child after 77 days of life. Things can always be worse. I can’t even imagine.

As I mentioned, Connor’s eye-rolling “episodes” as I now call them did not show up on EEG as seizure activity. After another day of comparing video of his eye-rolling with simultaneous EEG activity, one correlation our neuro could find was that when Connor is awake, electrical activity from his left occipital lobe tuber spreads over the left side of the brain. When he’s sleeping it spreads all over the brain. However, when he has the eye-rolling episodes, the activity resembles what it does when he’s sleeping even though he’s awake. But it doesn’t build up into a seizure. It’s just a little quick burst of activity from the tuber (which if I understand correctly isn’t uncommon in TSC) that dies away before it builds into anything. So, for the neuro, it still doesn’t explain why his eyes move like that when he has these clusters. He is still looking into it because he’s never seen this before. I’m glad now that he didn’t okay the ambulatory EEG because the test would have been a wash without video.

Anyway, December has been so crazy I never got to do my post about decorating for Christmas, which I love. So here are some shots of our house:

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B Santa

B soldiers

B train B tree

B room

And my new pride and joy: a Lego Christmas village! Put together, of course, by Chris. I don’t have the patience. Chris’s initial plan was to assemble and disassemble on an annual basis since he enjoys Legos. Several hours of construction later, that plan was out the window. I’ll explore the fake snow option next year, but after hours of work, Chris was opposed to anything that required the manhandling and moving of the parts. Very, very opposed. So Merry Christmas. I didn’t break the village!

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Shots of Connor’s first Christmas in the next blog entry!