Tuesday, January 17, 2017

One Step Forward and Two Steps Back When It Comes To Medical Care For Special Needs Children in the United States

I like to pretend like I have it all together but the last year of my life has been a confusing one. Confusing for my whole family. It was a year full of changes, mostly uninvited ones. My family has spent the last several years living outside our home state of Indiana. Moving was a huge adjustment for all us- particularly my oldest son. As most of you know, he has Autism. Thus, change is hard on him. I spent the first few years we were there fighting for proper education and doctors for him. Right when he started to get used to us living away from family and seeing new doctors we were blindsided with the prospect of moving, again. Like millions of people across the United States experienced before us- my children's father was unexpectedly laid off from his job. We had no probable plan that would allow us to stay in that area; given that, we decided to move back home.

Zain, Dryden, and Me

I didn’t take the decision lightly. None of us did. I thought out (what I thought was) every possibility. Unfortunately, I didn't anticipate the difference in permitted medical care between states. Before the layoff, we had been living right outside of Seattle, WA. In the time we were there I'd established exceptional medical care for Zain, Dryden (my youngest), and myself. Zain was lucky enough to be seen by a psych at Seattle Children's Autism Clinic on a regular basis. The man he saw consistently did everything he could to help us, regardless of cost. The hospital even went as far as to genetically test Zain and us at no cost. They used the findings in their research therefore we still got the results and they were able to do it for free. That place is amazing!

While we were there Zain's doctor was Dr. Hower Kwon. He got him onto the greatest medication cocktail we have ever used. It took us years to find the right mixture of medications. I have, in the past, tried numerous medications and cocktails for Zain to no avail. Zain struggles with several severe disorders. He battles Severe Insomnia, Intermittent Explosive Disorder, OCD, Anxiety, Speech Apraxia, a TIC disorder, and of course Autism. I was desperately trying to find him relief from the symptoms he’s dealt with most of his life. He is particularly plagued with the severe meltdowns and insomnia. Seattle Children's was able to get his meltdowns down to a minimum and at the same time treat his other disorders alongside his insomnia with very few medications. It was astonishing.

Seattle Children's Hospital Autism Center

The catch was that the antipsychotic we were utilizing in the cocktail wasn’t approved for the use in children or for the use in the treatment of Autism. The name of the medicine was Geodon. Geodon is, “used to treat acute manic or mixed episodes associated with bipolar disorder and to treat symptoms of schizophrenia,” as described by their website. This medication may not be approved for what we were using it for, but I assure you that many parent’s and Autistic adults use it every day for the same thing we were. You must understand that many of the medications that we parents’ use to treat Autism fall into the same category of “not approved.” Not to mention we had tried the ones that are approved, plus some others that aren’t and none of them had worked. All of them were well researched before started.

Picture Courtesy of disabled-world.com

While in Washington I had zero problem getting Geodon filled for Zain. The insurance companies there understood that he needed it to function smoothly. They didn’t even mind that he took it in two different dosages, twice a day. At 60 mgs in the morning and 40 mgs at night, making the prescription even more expensive for them to fill. The medication made a world of difference in Zain’s life from about 3 weeks into starting it. It was remarkable how different he was while on it. Before we started that med, he was taking a very large dose of Seroquel and was still experiencing very little relief in the symptoms he feels. He would have these horrid meltdowns where I was often hurt. He also jumbled his words together quite regularly and had a hard time communicating his needs to us. There were many times he experienced hallucinations throughout his life as well. The Seroquel didn’t help at all with any of this. Geodon did, it helped with all of that plus continued helping with the things the Seroquel did positively effect. When we decided to move back I never in a million years thought the insurance company in Indiana would look at my child's medications and refuse to give him any single one of them. The concept of denying a child medications that work never crossed my mind.

At the time, he had been on Geodon for 3 years. Once we settled in Indiana the insurance company here pulled Geodon from him without providing a way to taper him off it. That’s dangerous; of course, they didn’t care. They also denied our doctor’s appeal. I knew they would and even our family doctor’s office warned me that they probably would deny it. I, none the less, had hopes that they wouldn’t seeing as though the appeal was so well written and provided so much detail. We even included his records from Seattle documenting the improvement once he started the med in the appeal. None of it mattered though. Less than a week later they severed our last hopes of being able to continue with the care we had been using for years. I was devastated when they reached their decision. It shouldn't have surprised me though. After all, most insurance companies in the U.S. still claim ABA Therapy is "unproven" even after countless studies proving the contrary. They just don't want to spend the near $60,000-$100,000 a year it costs to pay for it, per child. Without insurance, there is no hope a family can afford that. Without insurance help there was no way I could afford Zain's medication either. The prescriptions would cost over $1,000 a month without insurance. I didn’t know what to do. The insurance company was nice enough to send me a letter listing what medications they would allow his doctor to prescribe though! Only a few we hadn’t tried.

Seeing as though so much of the decision falls onto the insurance companies lap, sometimes I don’t understand why we bother seeing doctors or specialists to begin with. Maybe we should cut out the middle man and let the insurance company “professionals” treat us instead. The way it stands, they have final say anyway. Of course, I am being sarcastic. The point still stands though. The system has it all wrong. They are hurting the American people every single day with this nonsense. You find people all over the United States that have been living with these hideous disorders and diseases with no hope of affording the medication they have been prescribed and no help from their insurance companies because they don’t recognize the need for it. They come to these decisions despite a doctor seeing a need and prescribing it. In my family’s case, the insurance company decided what medications an Autistic teenager could have without ever seeing him. They decided that they ultimately know more about Autism than Seattle Children’s Autism Clinic does. A clinic that is in the forefront of care and research in the Autism field. They know more than them!

Their decision that day changed everything in my son’s life. His whole world got thrown into turmoil. He went from stable to confused and angry at a very rapid rate. There wasn’t a single person from the insurance company that had to see or help deal with any of what they created either. That was left to me, his teachers, and the doctors that originally tried to help us. It took me 4 months to get Zain into a new specialist to get care. That is four months a 13-year-old suffered through anxiety attacks, meltdowns, jumbled words and thoughts, no sleep, increased trouble with social interactions, little ability to maintain any length of eye contact, and an intolerance for any change. In addition to helping Zain work through all of that I also had other things to worry about. One, my personal life and marriage were taking huge hits. Two, new doctors are stressful. There’s so much to remember and explain to them. Plus, it takes a while for us all to build a relationship and for the therapist to learn Zain's behaviors. Sometimes you also find that the professional isn’t too professional once you meet them as well. A lot of time, us parents seem to know more about Autism then the doctors being paid to treat them do. I was terrified I was about to walk into a situation like that. To top it all off, we had to travel several hours to reach the new therapist because there were none in our area that accepted his insurance and saw Autistic children. That isn’t a onetime trip either, Zain and I will be making that trip every couple of months for a very long time.

Picture Courtesy of Ianproject.org

We’ve had one appointment with the therapist, so far. The facility is called Harsha Behavioral Center. He has another appointment in a few months. Fortunately, the new therapist seems to know what she’s talking about, which is a relief. I never put too much into the initial appointment though! In addition to seemingly knowing her stuff, she seems to care about Zain. She also seems to have a background in Autism. Which is, of course, very important. At the first appointment, we went over medical and family background, as usual. We also talked about his challenges at home and at school. She spoke to me about what her future plans are for him as well. She then ordered blood work and prescribed a new anti-psychotic to try until we see her again. The medication is called Saphris. It’s still new to us so I really don’t have an opinion about it, yet. Somehow, I doubt it will work as well as the Geodon did but I am willing to give it a try-not that we have much of a choice. The potential side effects are right along the same as any other anti-psychotic out there. As much of a relief as that is I still feel as though he should’ve been allowed to continue the same medication cocktail that he was on before we moved.

Not a person that I’ve ran into that hears what happened with his medications believes it! We all find it to be preposterous. What's even worse is that it isn't just happening to us. All over the country doctors are frustrated, the pharmacies are irritated, and us parents are discouraged. Our children’s medical care is coming down to technicalities and money. Medical care should be the same across the nation, not vary state to state and the bottom line should never be cost when a child is concerned. Something needs to change, and soon. Getting most politicians and insurance companies to put quality healthcare for us in front of finances and the kickbacks they receive seems near impossible though. Just getting them all to sit and listen to us talk about the subject is difficult. I have found that difficult subjects are normally the most important to tackle though. Let’s hope this difficult topic is tackled on a national level soon because some of us don’t have forever to wait.

“One of the most difficult things everyone has to learn is that for your entire life you must keep fighting and adjusting if you hope to survive. No matter who you are or what your position is you must keep fighting for whatever it is you desire to achieve.”  -George Allen, Sr.

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