Yesterday I wrote about Noah slipping into mania and that we restarted his mood stabilizers.
What I haven't written about is why he wasn't on them.
You may recall we are working with a new psychiatrist (TNP) who came very well recommended.
She spent the summer getting to know Noah. She has also been trying to get Noah off some of his medications. It didn't go very well, and at the point when the tic surfaced we were concerned it was a withdrawal reaction. That and the slide back into some of his more negative behaviors had us agreeing that we needed to stop and let him stabilize again.
Then TNP suggested we look into a research trial at the National Institutes of Health, which would allow Noah to be in an inpatient facility and be taken off all of his medications so she could see what Noah was like unmedicated, since it had been several years since he wasn't on anything.
There was a trial that seemed like it would fit Noah, and would result in his being taken off all meds, intensive imaging and computer studies being done, and then restabilized on meds that are part of the study.
We started to seriously consider it as TNP was very persuasive with her opinion that Noah needed inpatient treatment before he was going to be able to get stabilized. Since it is almost impossible to get a child like Noah into a truly good facility for the time he would need at a place we could afford, the NIH seemed perfect.
One on one nursing to child ratio. Only 5 kids on the unit. Personal tutor so he wouldn't miss school. Music therapy, art therapy, sports every day.
The big sticking point though was that it is in Bethesda, and they would only pay for us to visit every other weekend. There was no way I was going to send Noah off like that and not be there to see him every day. The plan was that I would find a way to stay there while he was inpatient. I could work remotely during the day, and spend the afternoon/evening with Noah.
That was the only way I could imagine doing it. TNP didn't think that was a good idea. She felt I should be home with Kiel and visiting Noah every other weekend would be fine. She felt RIch and I needed the respite and time to just parent Kiel and give him some normalcy.
I didn't necessarily disagree with TNP, but I still couldn't imagine just leaving my 8 yo child in a hospital by himself.
So, after several phone calls with various people in the department, and then contact with TNP, the head psychiatrist there called to speak with us.
After reviewing all the information he told me that Noah would not be a good match for the study; not that he didn't fit the study based on his symptoms, but because it is a cohort study so the healthy cohort would need to fit his non-mood disorder disorders. And that, would be near to impossible. So essentially, Noah is too fucked up for the NIH.
Honestly, it was a relief when they told me. I was upset too of course, but I was almost convinced this was what he needed. I was relieved because now I didn't have to make what was feeling like the most difficult decision I had ever faced.
In talking with the psychiatrist at NIH I asked him what he might do with Noah's case, knowing that we want to get him off meds, or at least minimize as much as possible. He recommended that we stop the lithium. He was part of a study that compared lithium to placebo and kids like Noah, and it showed absolutely no difference between the two.
So, based on that TNP and I decided to try and take Noah off his lithium. He took a half dose for two weeks and did fine. Then we stopped it completely. Within days I could see him escalating. His behavior at school was worse. His behavior at home was worse. He was moving and talking faster. He was having more melt downs, and being more aggresive towards Kiel.
At one week post stopping it completely TNP wasn't convinced that was the reason his behaviors were changing. She said it could be coincidental. At week two when she saw him in his office and saw the mania, she agreed that he needed to restart the lithium and that this confirms in her mind that Noah does indeed have a mood disorder.
He restarted the lithium the night before he had the manic episode at school last week.