Isaac’s FOH Story

From the very beginning, even in infancy, it was clear that there was something off with our son. He had terrible sleep patterns with sleep disruptions, he’d wake up all night long screaming, and he was basically unable to sleep for more than 45 minutes at a time for probably the first six months of his life. He was also always in distress, all the time, for reasons that we couldn’t understand, but we’re clearly beyond what a typical baby experiences and he just continued to struggle. Things evolved as he aged, but he continued to have issues with sleep, had problems with temperature regulation, mood swings, depression, anxiety. So we knew from very early on that there was something going on that needed some kind of intervention to to help him.

We tried everything that we could think of to help. We took him to see different doctors, counselors, psychologists, therapists, you name it. He’d had several fever induced seizures when he was very little, which were terrifying, so we took him to a neurologist. They did EEGs and although they admitted they weren’t quite sure if it was correct or not, he was diagnosed with epilepsy. He was put on an anti-seizure medication that wound up making everything much worse. We experimented with his diet, we experimented with reward charts recommended by a behavioral therapist that we brought in, he was at one point diagnosed with ADHD and he went on ADHD medication, which in many ways seemed to make things worse. It was always just us stumbling around in the dark trying to find some expert who could tell us something useful.

It’s frustrating as a parent to know that something’s wrong, to be able to do some research on your own to try to figure things out, but ultimately know that you’re relying on experts to know more than you do to help you figure it out. So, when they all disagree with each other and when they’re diagnosing him with lots of different things and recommending things that don’t actually fix anything, and in many cases make things worse it can be pretty demoralizing. It’s really easy to get yourself into a, into a head space where it just seems like nothing’s ever going to change, and that your kid’s going to be miserable and have a terrible life. It’s horrible as a parent to feel like that is somehow inevitable and beyond your control. It felt like a lot of failed attempts and blind alleys, trying different things, none of which worked, until we found the one thing that did. Then everything changed.

My son had terrible nightmares from a very early age before we even really knew what was happening. He would wake up screaming multiple times a night, every night. When he got old enough to articulate what was going on we started to realize that he was having really bad nightmares that were traumatizing. They were so awful that it got to the point that he would really resist going to bed. I know all kids do that to some extent, but it was clear that he was really terrified of going to sleep because he would resist going to bed the way you would resist getting into a fight with a tiger. Going to bed was not something he felt safe doing. Then, during the day, he’d be haunted by memories and imagery from the nightmares and he’d have obsessive thoughts about them. You could see him biting his nails and chewing up his hands from the anxiety. These nightmares were ever present day and night.

For our son the only partial refuge he had from those nightmares was us, being with his parents. I don’t know that he felt totally safe when he was with us, but he felt a safer so he would fight tooth and nail to prevent us from leaving his bedroom at night. He would really, really need us to be there until he fell asleep so deeply asleep that he wouldn’t wake up when we’d move one muscle toward the door to leave. Of course, usually an hour or two later, he he’d wake up from a nightmare and come into our bedroom screaming and crying and need to sleep in our bed while just shaking with fear.

In hindsight, it’s obvious the extent to which temperature and thermal dysregulation played a major role in all this. We live in a part of the Mid-Atlantic where there are pretty significant temperature swings, particularly around the change of seasons. Those were always really rough times for him, in the spring and the fall. In the winter on very cold days, he would want to go outside wearing shorts and at t-shirt and refuse to put on his coat. Then would end up having a bad day with tantrums and being terrified to be away from us, sort of spiraling out of control with cascading behavior problems.

When I talk about things being kind of out of control when there was temperature, instability or weather instability I mean, that he’d experience rapid cycling moods, with hypomanic or manic behaviors. Probably the worst time of day was late afternoon/early evening, around sunset. That was when he’d get overexcited and stimulated or angry or upset which was, from our outside perspectives felt pretty unpredictable reasons.

When we finally figured out what his actual diagnosis was, and he started having the right treatment, things really changed, and we needed that for him and for our family. Over time all of the stuff that our son was dealing with, that we were dealing with right along with him, impacted everyone in the family individually and as a group as well. For example, it put tremendous stress on his older sister and it really undermined her ability to have a normal childhood, because to some extent she was having to live her life in the presence of this volatile unpredictable illness. Additionally, of course, it took so much of my wife’s and my attention and energy all the time that there just wasn’t much left for her and because you’re so drained from dealing with this stuff day after day after day. It’s a presence. It’s like a wild animal — and I don’t mean he’s the wild animal, I mean the condition is like a wild animal — living in your house with you. It’s just a constant presence and a constant stressor and it makes it difficult to feel like you can have a normal life. You can’t invite friends over, or you have to be really careful about who you invite over and make sure it’s very well managed so that there aren’t any problems. It’s painful dealing with relatives who mean well but don’t really understand what’s going on and sometimes make things worse when they’re trying to help. It affected all of us in different ways individually and it affected us as a group.

Looking back on this, I’ve painted a pretty grim picture. But-of course things are actually really good now, and they have been since we found out about Fear of Harm and found a doctor who was able to finally understand what was going on and was able to get our son on the right medications and get him off the wrong medication s. It was totally changing for us and totally life changing for our son. I just think it’s just incredible good fortune that we happened to stumble onto this path, and found the right people to help us with this. It so easily could have not happened and I don’t even want to contemplate where things would be today if that were the case.

My greatest hope for other families, and kids, and people suffering with this is that they get the right diagnosis and the right treatment. It’s life or death, I mean that literally, it’s life or death.

The more people, the more professionals who ca develop an understanding of how this disorder works and what it looks like, and can start to diagnose it and treat it properly the better. There’s a lot of lives to be saved.

The people of CMHRC are just incredible. They’re the only people in the world dedicated to helping people understand Fear of Harm, how it’s diagnosed and how it’s treated. CMHRC is a lifeline for families who are finally able to find an Oasis, to find answers and solutions. It’s life-changing.

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