Being a special needs parent is NEVER easy. Whether your child has Autism, another developmental disability or something as uncommon as schizoaffective disorder, life is challenging. We face things on a daily basis that most parent’s would consider their worst nightmare. We do it out of pure love and devotion for our children. Sometimes this requires us to make decisions that many people will question and even criticize us for. Sometimes issues present themselves and have no clear cut “right” or “wrong” answer. Sometimes we are forced into a position that requires us to make choices that could have serious implications in our children’s lives but at the same time have the very real potential to IMPROVE their lives as well.
We have found ourselves in one of these situations with Gavin. I wanted to share our story in order to give more insight into our plight as well as the plight faced by many special needs families
I have been telling you about Gavin and his decompensation. For anyone newer to the blog or unfamiliar with our story, Gavin has been diagnosed with Schizoaffective disorder as well as Aspergers (just to name a few).
We have been struggling to manage the “schizo” side of the Schizoaffective disorder. Gavin has been hallucinating for a long time. After taking anti-psychotics for a few years he had a VERY serious reaction that had him in the Cleveland Clinic for about a week. So we have, over the last year, slowly brought anti-psychotics back on board. They are however, not effective, as the audio and visual hallucinations are persistent. That sums it up for right now. You’ll have to dig through the archives if you want to read more.
I met with Dr. R yesterday afternoon to figure out what we are going to do. We discussed his current state of being. He is clearly psychotic and the current medication regiment isn’t working. Herein lies the problem. We have come to the end of the road as far as medications go. There is one medication left but it was a last resort for a reason. We knew this time would come and have been discussing this for a while now in preparation. We ALWAYS throughly research ANY and ALL medication changes and this was no exception. As it has been made clear the Zyprexa just is working anymore and Gavin is paying a very high price as a result. Clozapine is the only medication left on the list of options. Clozapine is the most tightly controlled medication in the United States. We will only get 7 pills at a time. In order to get the script refilled the pharmacy MUST have a certified faxed copy of his white blood cell count from that day. This process will repeat every week for at least the first 6 months. After that the we will get 14 pills at a time and that will blood work every 2 weeks for at least the next 6 months. After at least one year we will move to 30 pills at a time and bloodwork once a month. He CANNOT miss a dose. If he does we have to start over from begining.
This medication is considered safe under these conditions and close monitoring. I’d be lying if I said this wasn’t making me nervous. However, I (and by “I”, of course I mean Lizze and I) have to look at the big picture. Gavin’s quality of life is petty low. This medication is his best (and only) chance to make the voices stop. For those sitting there thinking, “how could you use such a medication on your child?”. The real questions is “how could we NOT use this medication”. Your not in my shoes. I sit helplessly by watching Gavin decompensate. As a parent, it kills me that he has to question EVERY voice he hears or EVERY person he sees because he doesn’t know if anything is real or not. Dr. R has earned our trust over the past 5 or 6 years. 80% of people with a “schizo” disorder respond well to the medication and it really helps them. The other 20% derive no benefit from it but 10% of that 20% don’t respond to any medications. Does that make sense? We will have to be VERY diligent with the Clozapine, there’s no question about that. However, if this can help to improve his life then it’s worth the increased responsibility.
We made arrangements for the weekly blood work today. Dr. R is coordinating with the pharmacy to navigate all the “red tape”. As soon as everything is arranged then we will have to get the first blood drawl done to establish a baseline. Then we will start the medication and slowly bring him down off the Zyprexa in order to avoid last years complications.
As a special needs parent you never know if your making the “right” decision. You have to trust that you are making the “best” decision possible. It’s a unfair position to be in but it goes along with the territory.
Please pray that this brings Gavin some much needed relief and well deserved “peace and quiet”, literally.
-lost and tired