Who thought it was a good idea to take her kid along for a dentist appointment? This gal!

January 20, 2015 Rebecca Gaunt Leave a comment

It turned out not to be a good idea. Not a good idea at all.

I wasn’t able to get an appointment within the planned window of time when I called. I had to wait until after the new year and slots were few. I just took the first available. I figured when it got closer I’d either ask someone to watch him or I’d take him in the stroller. He’s pretty mellow most of the time. I felt if he was in the stroller, it would be doable as long as I had access to YouTube on my phone.

Atlanta was entering a week of Seattle-esque weather so I was a little cranky to start with the morning of my appointment. As I began to put our stuff in the car, it hit me. The stroller was in Chris’s car. My husband mostly works from home, but today he was at the office.

There were lots of four letter words as I realized that this appointment was going down like the Hindenburg. A toddler at an appointment is one thing. A free and unconstrained toddler is another. And with less than an hour until appointment time, there was no way I’d risk a cancellation fee. Emotionally that’s akin to paying to park, when walking a couple blocks will get me a free space.

Ah yes, the space saver high chair that fits on a regular chair. He could be locked into it off to the side of the dentist cube, yes? That’ll do. I was feeling very MacGyver and brilliant. Connor is always fascinated when the chair within a chair is placed on the floor. He will sit in it just because of the novelty.

I discovered his love for sitting in the chair without a chair when I set it on the floor during a weekend in the mountains and he didn't want to get out of it. — I discovered his love for sitting in the chair without a chair when I set it on the floor during a weekend in the mountains and he didn’t want to get out of it.

Problem solved, we headed off.

First he decided he was not sure he wanted to walk into the dentist office so he plopped down on the ground outside the door. I was losing my grip on the chair at this point so I set it inside the hall so I could encourage him to keep going. He came in the first door and then decided he wanted to hang out right there outside the actual office, so he plopped down again. He was eventually coaxed into the waiting room by the sight of his magical throne…on the floor.

My dentist is never on time, no matter what time of day the appointment is. I will say that this particular morning they were only 15 minutes behind, but Connor’s unwillingness to settle on one place to sit made it feel like much longer. At one point I thought he was going to try and make off with an older woman’s walker.

When the assistant finally came to get me, I made a point to loudly blame my husband for the odd situation. The part about him unexpectedly going to the office was a lie. The part about him making off with the stroller was true. A lady laughed and I could tell she was admiring my brilliance in the face of such hardship.

First problem was that they needed a full set of x-rays, probably because I have forgotten to go since Connor was born. So he had to sit in the chair outside the cube. He didn’t care for this plan and he let it be known. Loudly. One of the hygienists walked him around the cubes while my gag reflex went into the most overreactive state I have ever experienced. It was seriously ridiculous. Every time she stuck that cardboard in my mouth, I felt like a cat with a hairball.

Connor returned for my cleaning and he was locked into his precious chair. Except apparently he only likes the chair on the floor if he’s not locked in. And it’s his decision. Toys got tossed, his new toothbrush gifted by the hygienist got tossed — come to think of it, I haven’t seen the toothbrush since. Guess it got tossed in a corner somewhere. Or it’s at the bottom of my purse. Either way, gone forever.

I could hear myself thinking from just a few short years ago from another cube. “This lady seriously brought her kid to the dentist? It’s called a babysitter. I will never do that when I have a kid!”

My hygienist tried to get him to color, despite my explaining that with his delays, we weren’t quite there yet. But she did give it the old college try. She was very nice, considering. I think it helped that her first, now adult, child had special needs, too. Another employee came to walk him around and keep him busy while I was being cleaned. He returned for the wait for the final check by the dentist. He explored the mechanics of climbing on me and jumping off me in great detail. When the dentist finally came, my hygienist corralled Connor for the check, where once again I was encouraged to remove the partially emerged wisdom tooth that didn’t make an appearance until my 30s (it is my only wisdom tooth, even on x-ray). I would have asked a couple of questions about my teeth, including if I should do anything about the one I recently chipped. It’s really small and Chris swears it’s not noticeable, but I’m kind of obsessed with it. But he took off before he could be handed toddler duty. Probably for the best, as one of my questions would probably have been answered with, “Stop drinking coffee.” That’s never going to happen. In fact, I chipped my tooth on my coffee mug.

Now that the visit was over, Connor decided to be cooperative and did a good job of waiting while I checked out and following me to the car. I congratulated him on the success of his mission. I will never try this again. But that’s okay. Vengeance will be mine.

Georgia, Medical Marijuana

Deal. Real. Before pharmaceutical companies I kneel.

January 11, 2015 Rebecca Gaunt 6 Comments

There 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 Adelson? Adelson 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.

A trip to the ER and other medical hassles.

January 3, 2015 Rebecca Gaunt 6 Comments

And of the medical hassles, the ER was the most pleasant one.

Our Christmas Eve tradition for the last few years is to have family over for Christmas Eve dinner. We stuff ourselves with appetizers and leave a ton of leftover ham, mashed potatoes, pasta salad and green bean casserole. Within three minutes of our guests leaving, hardly even giving us time to complain about the bottle of wine that we opened and was hardly touched (it was one of those mondo size bottles that leaves me torn between not wasting perfectly good wine and the fear of sleeping through Christmas Day in a stupor), Connor was fussing for his iPad by the kitchen table and went down with a loud thunk. I picked him up and set him on the island, hoping for his standard forehead bruise. It’s a constant battle to keep his forehead a normal skin color, and that is why he frequently wears head protection. I realized he was bleeding and called to Chris for paper towels. One swipe and I knew we had a problem. This was deep.

We headed to the Kennestone Hospital ER where Connor received three stitches. We were in and out in just under two hours. It was impressively simple and undramatic, but I guess when you’ve already done the NICU and brain surgery, three stitches ain’t no thang. In fact, Connor had spent the entire day being royally uncooperative as far as smiling for photos, giving me the first in the waiting room with a hole in his forehead.

Getting the stitches in was easy. Getting them out turned out to be the pain. The ER doctor informed us that while we could come back after the holiday, the wait would go back to standard long waits and suture removal is bottom priority. He recommended getting them removed at his pediatrician. I love his pediatrician. I do NOT love the office staff that stands between us. I called to make an appointment and was told that she’d have to check and see if anyone would do it on a young child’s face. “It’s just three!” I tried to persuade her. Two hours later, a nurse calls me back and says it’s okay. She transfers me to the scheduler. “Well, they don’t usually do this on kids under three. I need to check.”

“We just went through this,” I explained. “I was transferred to you by the person who got the okay.”

“I still need to check.”

WTF.

After a long hold, she comes back. “You’ll have to take him back to where you got them.” I don’t think a doctor was even consulted. It was just “office policy.”

I was pissed now. I informed her we would not be going back to the ER. I did not inform her of how wasteful of time and money this was, or what a burden this kind of crap is on the system. I asked if an urgent care would do it. She thought they would. But after careful consideration of the all the germs floating around in waiting areas and the fact that the flu is reportedly raging through Georgia, we opted to Google stitch removal and do it at home. If there were a lot, we wouldn’t, but three seemed doable, and it was actually pretty easy. So take that, idiotic office policy.

I also handled the fact that last month’s paperwork glitch regarding Connor’s Sabril (vigabatrin) prescription was apparently never resolved. Typically, if there is an issue filling this prescription, a group called SHARE works with the manufacturer to make sure prescriptions go out. I learned that this is not the case if you are marked non-compliant with the eye doctor paper work. They had sent us last month’s prescription in spite of the screwup. Thanks to the FDA, they couldn’t do it again.

You see, Connor takes a seizure med that carries some risk to peripheral vision. The FDA, when they finally got around to approving it in 2009 — 30 years after initial clinical trials — decided that if you wanted to use it, you had to have eye exams every three months. They also recommend ERGs every three months. An ERG requires Connor to be put under for 45 minutes to an hour. We stopped those a long time ago. He had one come back indicating a change. But nobody could tell us squat about what that meant, or if it was even more than a fluke. Not even all eye doctors recommend it. Some bend to the fear of the FDA and others flat out tell you it’s a waste of time and they can tell you very little with young children.

The regular eye exams (at which the eye doctors also acknowledge they can’t tell you much and it’s just an empty requirement) are very mandatory. Paperwork must be submitted to keep the meds coming. Some parents speak of obtaining waivers for these, but those waivers seem like unicorns to most of us. Something wasn’t submitted properly. Then it didn’t get fixed properly. And then it was decided by all parties (other than me) that the best option was to not give my child his seizure meds and status seizures, brain damage, even death was a better possible option than some minor impairment of his peripheral vision. The FDA is apparently well aware that one needs 20/20 vision when on a ventilator fighting for life. I did not inform the manufacturer or pharmacy that I was able to obtain some for Connor so that he was not at risk for the terrible dangers of cutting a med cold turkey. Eventually the kickass assistant at his neurologist’s office was able to fix the situation, further proving that they are the only medical office I have ever been able to count on.

Sabril was not the only source of my fun with pharmacies. I tried to refill his Onfi. When I called to do so I was informed they were out and I could fill it locally if I had the local pharmacy call to transfer it. Annoying (don’t you plan for your regulars?) but okay. I had filled it at CVS before. First I tried Walgreens because it’s closest. No pharmacy in the area had it. Then CVS. Nope. Then Kroger. Nope. I called the mail order pharmacy, Optum Rx, back and asked what was I supposed to do now.

“Well, you may have to call his neurologist and get a prescription for something else.”

Something else? Just replace his highly addictive benzo?

“I don’t understand how you just run out of something you are supposed to mail on a regular basis. I want a supervisor.”

Three people later, we were able to piece together that by “out” what they actually meant was that they could have it to me by the following Wednesday, but they didn’t have it that day (Friday). It apparently took three people to get this vital piece of information that took a major issue to a non-issue. In pissed relief, I told them that was fine.

Have I mentioned I have three different pharmacies for Connor? So much for safeguards where the pharmacist can be that extra set of eyes watching for interactions and issues. I have to get Sabril from CVS Caremark (which is great as long as the FDA stays out of it), Onfi is from Optum Rx (their motto is “At least we’re not Accredo”) and all others from a local CVS.

So now we’re stocked back up on meds. It’s 2015. Despite all the venting in this post, I think it will be a good year and I hope it will be a good year for all my friends in the epilepsy community that spent the holidays in hospitals. I will leave you with some pics of Connor’s Christmas (three times in three homes!) to cleanse the palate.