I just wanted to post a happy update about my son Sawyer. For a little background, Sawyer has been an extremely difficult child for most of his life. He’s autistic but he’s also got severe OCD and he loves to destroy things. He’s also plagued with rage and terrible tantrums. He harms himself when he is angry. Our life has not been easy, and I would not have chosen this path had God asked for my input.
When he was about four things got so bad he had to be medicated. That medication was an anti-psychotic made for people with schizophrenia. It was not made for four year old autistic kids, BUT, Sawyer was being violent with his baby sibling, and we couldn’t allow him to keep harming our other child, and we were worried that he might actually kill the baby on accident. So we started the medication and Sawyer calmed down. But, it gave him a flat effect. What I mean is, Sawyer was no longer ever happy. He was either blank, or he was drugged out or he was enraged. Gone was our happy child. Nothing seemed to give him joy anymore. He still liked music but not in the same way that he had. It was heartbreaking. We spent the next several years going from doctor to doctor, seeing different neurologists, etc and trying to get another medication perscribed.
Here is what happened. No one would take him off this medication. Instead they added other meds on top of this. Some of these were horrible. One made him have a psychotic break and he had to be hospitalized. In desperation, we took him off of all meds for a short time. Things got terrible quickly and so we reluctantly put him back on them. It was not a good situation and the side effect of this med were doing terrible things to Sawyer. Things that could become permanent.
About three years ago I felt that God was prompting us to start again with his meds. I felt like we were supposed to take him off of all meds for a good amount of time (to let all of them leave his system). Maybe we would find out that he would not need any meds anymore (I really hoped this would be the case), or maybe it would just give him a good clean start to see what different meds would do to help him. So, with our doctor’s reluctant approval, we weaned him off of all drugs.
…And all hell broke loose. Literally. It was a TERRIBLE year. Terrible. Yes, I said a YEAR. We were in it for the long haul and so we let him go a year with no meds to give him a complete break. He was SO difficult. SO violent. He didn’t sleep or want to eat anymore. But…. he was also happy. His joy came back, and this, we decided, was not something we were willing to lose again. After a year, when it became really clear to us that all meds were clear of his system and he was NOT going to come around to being easy and placid, we began looking for a good psychiatrist. Sawyer had seen a BAD psychiatrist but we wanted someone who knew what he was doing with the whole drug thing. We got some recommendations and found someone.
Our first appt. was quite short. Only about 15 minutes. The dr. met Sawyer, talked to us, took a quick history, asked us what we hoped to happen and perscribed some meds. He listened when we said we did not want anything that would give Sawyer a flat effect. We were not interested in them no matter how great the drugs were supposed to be. We wanted Sawyer to be able to feel and experience emotions other than anger and blankness. The dr. ended up perscribing a completely different class of meds than we had ever tried before and the difference was remarkable. But not quite right. Sawyer was a little lethargic. He wasn’t sleeping soundly. He would get violent at certain times of the day. We went back every week for a while and the dr. would tweak this med a bit or that one. Tell us to try giving them at different times of the day, etc. There is one class of drug that we have found that Sawyer absolutely cannot tolerate (even though they usually work great for kids with his problems) but we’ve found other’s that work for him. Soon we tapered our appts. to every two weeks then once a month, and that is where we have stayed. Our appts. now are only a few minutes long. Sawyer’s meds have been pretty stable for over a year and he is doing so great.
He is a different child. He still has bad OCD but he is much calmer. He talks more. He has more patience. His tantrums are not even in the same ballpark as where they were before. Our lives have gotten exponentially easier and I am so glad we did this.
I am not going to tell you what meds made him crazy or what meds work for him now. They are different for each child and that is the point. But I do want to offer hope. If you are going through something similar, you might try seeking out an experienced psychiatrist. If you find someone who knows what they are doing, who will listen to your concerns… it can make all the difference in the world.
I used to be afraid to admit that Sawyer was doing good. I was afraid it would be all taken away. I was afraid the fates would see me bragging and smack me down. And Sawyer DID seem to go downhill just about every time we said things had stabalized. But God convicted me that I needed to tell people when Sawyer was doing well. I needed to enjoy it for the gift from HIM that it was, and so I am. I do.
I know that if things start to go downhill again, we now have a good doctor who will listen to us in place. He is willing to try different drugs, he knows how they interact with each other, he knows side effects and he listens to our concerns and tweaks things accordingly. And I know that we will get things under control again quickly.
Life is good right now. I am blessed. Sawyer is still disabled but …manageable. I write this post not to brag but to perhaps give someone who is still struggling some hope. This is what has worked for us.