Instincts

How do you know what’s right? Do you listen to your gut feelings?

When Josh was 18, his OCD behaviors had gotten out of control. Debilitating. It would take us 15-20 minutes to be able to leave the house, because he had to do “all the things” that had to be done before he could leave, sometimes twice. He had to go from one end of the house to the other, turning magazines upside down, turning on all the lights, flipping anything and everything backwards or upside down.

We had an amazing family doctor at the time. He was very respectful of my need to do things as naturally as we could, and never pressured us. When we finally talked to him about Josh’s behaviors, his office went to work looking for a psychiatrist who had experience with Autism, but also accepted Josh’s insurance.

Recalling our first visit with the psychiatrist they found still makes my blood boil. Tom and I described what was going on with Josh, and how bad things had gotten. I explained that I had tried his whole life to do things naturally, that I had never wanted him to be on medicine. He looked at me and said, “I am the doctor, you’re just the mom.”

Anyone who knows me can’t believe I didn’t tell him to eff right off, and get up and walk out. Or worse. But I tell you, the desperation we were feeling to help Josh, even to help alleviate some of our stress, won over my disbelief at this guy’s unthinkable words.

He proceeded to tell us how he “treats these kinds of things all the time,” and there’s “a protocol he follows with all of them.” (Again, I’m beyond pissed at this, too. How are you not going to see our son as an individual, instead of just another person with Autism?) We left there with four prescriptions that day, and my heart was broken but I was hopeful that this would help.

When we went back for the next visit and explained all the things we were seeing, he added another drug. (At one point this jerk had Josh on 6 different drugs.)

Josh started to gain weight- like a LOT of weight. Each visit didn’t make things better, made me more frustrated. Our beautiful, once happy boy was now living sloth-like, he didn’t want to go outside, barely did anything but lay on the couch, watch videos and eat. He also started drinking a ton of water, he would stand at the sink and fill up glass after glass, multiple times a day. When I brought this up to the psychiatrist, he brushed it off. He actually suggested we put pullups on Josh so he wouldn’t have accidents from drinking so much water. Actually, any time I brought up a concern, or asked him about a natural thing I had heard or read about, he dismissed it. I once asked him about gaba, and his response was, “It doesn’t matter if it’s a natural thing or made in a lab. If you eat something poison growing in the woods, it will still kill you.”

At another visit, I asked the psychiatrist about CBD, and the positive things we’ve been learning about that. He laughed it off, and said there’s nothing concrete they’ve found that says it could help someone like Josh.

I should also say that Josh did not like this guy at all. It’s possible he was picking up on my feelings, but he would start to get super agitated when we were almost to the office, and while we were there he would hand me my purse and say “All DONE!” multiple times during each visit.

During this time, Josh started to get some sort of boil on his neck for the first time. Our family doc lanced it once, but it came back so he referred us to a surgeon. Josh would have surgery on his neck for these boils twice, and they did a blood draw each time. After the second surgery, our family doc let us know Josh’s A1C was 12. Normal A1C is below 5.7, so this was scary. He told us Josh was a candidate for insulin shots right now. I asked him to let me try and get it under control with diet, and he agreed- giving me a timeline of 6 months, with a blood draw after three months. He also referred us to a diabetic nutritionist at the hospital. During that visit, we found that one of the medicines the psychiatrist has Josh on actually raises your blood sugar. The nutritionist agreed to help us find another psychiatrist.

Before I heard back from the nutritionist, we had another visit scheduled with the original psych. At this visit, he asked me if I had ever looked into CBD. WHAT?!?! I actually said, “Are you freaking kidding me??” I was so furious as I had asked him about that just two visits ago. We left and never went back. I can’t believe we continued to see this guy for almost a whole year!

The nutritionist found another psychiatrist for us to check out, and I made our first appointment. Our experience with this doc was like night and day from the previous psych. He was super laid back, and Josh was immediately comfortable with him. We brought all of Josh’s meds, and he asked questions like, “When Josh has violent outbursts, how bad does it get?” What? Josh has never been violent in his life. That’s what one of the meds was for. “How often does Josh have seizures? Tell me about them.” Josh has never had a seizure! Apparently that’s what another med was for. It turns out, each med was supposed to help with one thing, but caused another, so the original psych just kept adding meds. We left that visit off 4 meds, and weaning off the 5th. The new psych ended up giving Josh one med, with another sort of “emergency use” sleep med.

After about a year on that single medicine, we discussed with the psychiatrist about getting Josh off of it. It was never my intention to use medicine, and Josh was in a really good place. We did stop using that medicine over a year ago now. Recently I considered calling the psych back and exploring options, when things were really rough for a few months. But then Josh seemed to come out of the “crazy,” and he’s doing great again.

Quickly back to the A1C scare, we did drastically change all of our diets, plus he got off the medication that raised his blood sugar, and the blood draw check showed a normal range.

The bottom line is, I don’t know the answers. I know we need to do what’s right for our own family, and I will never again ignore my instincts.🍀

I love that I’ve been getting pics with actual smiles lately! For so long it seemed like I could only catch him mid-CHEESE!