Monday, February 26th, 2018
This week’s theme for the Flickr Macro Monday group is “Less Than An Inch.” From this week’s instructions (from Alan Crawford):
This week, pure and simple, take a photo of anything as long as it, and any negative space, is less than 1 inch or 2.5 cm. Tag your photos with “Macro Mondays” and this week’s theme: “Less Than An Inch” or alternatively you may use #MacroMondays and #LessThanAnInch. Remember the rule (for this week) of a maximum of 1″ (2.5 cm), including negative space: That means photographing something NO LARGER than 1” (2.5 cm) in its largest dimension or photographing a mere 1″ (2.5cm) of a larger object.
Expensive Experiment
I don’t talk a lot about Dominic here on my blog anymore but this post is going to be all about him today (and he has given me his permission to share this post). For those that are new to my blog, Dominic is our youngest. He’s now 13 years old and in the 8th grade.
When he was born, Anna was three years old and she had global developmental delays. We did not yet know about her intellectual disability or autism, or that she would develop epilepsy within the first few months of her brother’s life. The next few years became even more intense and life revolved around Anna’s therapies, interventions, and specialists. I just lugged Dominic along with us to all of her appointments. I think because her issues were so complex, I didn’t want to acknowledge that he had his own challenges. Dominic’s elementary and preschool teachers all gently suggested that he might have ADHD. I poo-pooed them… he was just being a boy… he was meeting milestones… he was fine. It all came to a head in 2nd grade, when Dominic was in the office weekly for behavioral challenges, and then he got suspended. We took him to see his first psychiatrist and got him tested. He did indeed have ADHD, and to our surprise, he was also depressed. We made the difficult decision to medicate him.
Here’s the thing about neurological and psychiatric drugs… it’s all trial and error to see what works and what doesn’t. It’s a scary proposition, poking medications down your young child’s throat, not knowing if the side effects will make things worse, praying for a dramatic change in behavior. But Dominic was not functional in school and was starting to alienate his peers. He was so unhappy and even worse, he felt like his negative behaviors were his fault. After months of experimentation with various medications, we learned that he could not tolerate stimulants and found a decent balance with Strattera and Intuniv. He improved. Fast forward a few years, we added an anti-depressant to help him with the worsening depression and a mood stabilizer to help with his anger. In middle school, Dominic’s struggle with depression and impulse control got worse. We changed psychiatrists because of the move from Austin to New Braunfels, and the new doctor recommended trying a stimulant again… a mild extended-release liquid called Quillivant XR. It made a night and day difference for Dominic. We saw him smile again, he made real friends, his grades improved, and his visits to the principal’s office became non-existent. We were able to discontinue two of his other medications because the Quillivant worked so well for him.
Last year, Curtis’s division was sold to a new company, so at the beginning of this year, we had brand new insurance for the first time in six years. Much to our surprise, we discovered that all of our prescriptions went toward our $5K deductible in addition to medical visits. We also discovered that Dominic’s Quillivant was not covered at all and that Quillivant was on back order through the manufacturer and was difficult to find. (On a side note, several other medications for myself and Anna are not covered at all; one of my medications was $342/month so I stopped taking it. One of Anna’s is $169/month. Ouch. Most of our regular prescriptions allow one fill at our regular pharmacy and the refills must be through their mail order pharmacy or they won’t be covered… this was shock number two when we started getting refills in February.) I spent hours on the phone over the last six weeks with different prescription benefits representatives, with various pharmacies, and with the doctor’s office. First we had to find the Quillivant, then we could figure out how to get it covered (which will involve a letter of medical necessity from the psychiatrist to the medical review board for the prescription benefits company). I managed to find the Quillivant for January from a different pharmacy for $270, but for February, I couldn’t find it anywhere within a 100-mile radius. The manufacturer doesn’t have any update as to when it will be back in stock. After talking with the psychiatrist, he recommended that we try Dominic on Concerta… basically the same base medication as Quillivant but in pill form. Since he was a few days away from running out of Quillivant, I had to drive to San Antonio to pick up this new prescription for Concerta and get it filled. He started on it last weekend when I was in the hospital.
Last week was an awful week for our son. He was grumpier than usual, sometimes he was downright oppositional. Tuesday evening, he reacted badly to a joke and shut down on us. Wednesday morning, Dominic and Curtis got into an argument as Dominic was leaving for school and Dominic came back into the house and said he wasn’t going. After being firm with him, Curtis got him to make it outside just in time to catch the bus to school, but we were all near tears and very upset. Later in the day, the girl that Dominic asked to the school dance canceled and he got very angry. When he got home from school, he went directly to his room and shut the door. He didn’t want to talk about it. Thursday he woke up with tummy issues and stayed home. Friday, he went to school but forgot his headphones, so I had to chase down the bus because he couldn’t stand to listen to country music on the way to school. Two hours later, he texted me saying that he was in his behavioral specialist’s room. He said that he was angry with the kids for talking during announcements and he yelled at the entire class before storming out. I made the connection to the Concerta and said maybe it was this new medication that was making him grumpy. He agreed saying that he’d been feeling irritated and violent since being on it. “I am angry at everyone for everything, even if it doesn’t make any sense.” Curtis went to pick up Dominic from school… there was no way he was going to be functional so he brought his school work home.
I left a message for his psychiatrist to see what other options we had and again began calling pharmacies to see if anyone had the Quillivant in stock. I still had his Quillivant paper prescription from late January and after the fourth call to various pharmacies in San Antonio, I found one that had Quillivant. However, the prescription was 28 days old and they would only honor it for 21 days. So I had to get a new paper prescription from the psychiatrist first. I called again to the psychiatrist and left another message, then praying that he was in the office, took off in the car to head to his office. Luckily, he was seeing patients that afternoon and I had to wait about 40 minutes to get a new prescription. (I still haven’t received a call back.) Then I headed to a tiny Target in central San Antonio that was supposed to have the Quillivant. There was a moment of panic when I thought I was at the wrong store, but they did have it. The packaging was smaller, so I had to get two bottles… the cost? $580. I almost cried. I was still recovering from the kidney infection and had been driving around all day. The pharmacy staff worked with me to look for coupons and discount codes to no avail. Nearly two hours later, I walked out with Dominic’s Quillivant and $580 charged on our emergency credit card. I didn’t get home until 6:30 that evening.
I don’t know how families with two working parents can find the time to manage issues like this… endless phone calls and appointments and driving… and how can anyone afford these kind of prices? Curtis and I have talked a lot about the difficult choices we have to make to help our children. There has been a lot of talk in the media lately about mental health and medications with regard to school shootings. I could see how this change in medication made Dominic so angry. We do not have typical kids so many parents do not understand how hard it is to decide to medicate. What would happen if they didn’t have these medications at all? Why do our kids even need these drugs in the first place? Why are there so many more kids diagnosed with psychiatric disorders and on the autism spectrum? Is this strictly an American issue? The dollar cost becomes irrelevant. We do not know how these medications work, we do not know what effect these medications have long-term, and we have to experiment using a trial and error process in order to find the right combination of medications to help our children function (it was a similar process to help Anna manage her epilepsy). We will do whatever it takes to help them.
So my photo today represents the expensive experiment to which we are subjecting our children. This tiny pill, Concerta, at 3/8″ long, caused our son to become angry and violent. Because of a pharmaceutical manufacturer’s lack of medication availability, and the change in our insurance, we had modify what was working for Dominic. We are good parents. We are involved. We set limits and boundaries. We have a team of medical and educational professionals helping us help them. We just want what every other parent wants for their own kids… for our kids to be happy. At the end of the day, that’s all we want… a chance for them to be happy. But at what expense?
Nikon D750 | 105mm | f/8 | 1/250 | ISO 500
Thanks for reading and for looking.
