The last few months have been a long series of blood draws and "wait and see" pauses. Behavior in these last months has been better than ever before, but that doesn't mean we're anywhere near normal. Still, it's manageable. He often goes many days at a time without destroying anything or hurting anyone. Tantrums calm faster and we're able to do some activities as a family. We went to the renaissance faire and my little boy asked to go dance with everyone in the big circle. It was wonderful! He was so proud of himself! We went camping twice and things went really well.
We've never gotten the Depakote levels up beyond the low middle of the therapeutic range, and the Leukocyte count has stayed below the normal range, but just barely. We've discussed trying a different med, but the problem is that there are really only about 3 places to go from here. One it Lithium, which has a very thin window of efficacy and becomes toxic above that level. Below that level it does no good. At Pajama Monster's size that window is so tiny that moving into the toxic range is very probable, so that's a no-go. The second option has some potentially permanent side effects that increase in probability with exposure, so starting at age 4 means I'm likely signing him up for permanent side effects, even once the med is stopped...also not something I'm willing to do. The final option is to stay in the Depakote family. The Lamictal that sent him into a manic fork wielding attack on the baby is also in the Depakote family, so we might be back in for another episode like that, or we might have the same problem with low Leukocyte counts. That's our best and only option as I see it if the Depakote can't be made to work safely.
That brings us to our current situation. Pajama Monster's last blood tests showed his leukocyte count as barely back into the normal range, but his Depakote levels have dropped below the therapeutic range, despite the fact that we INCREASED the dose a month ago. The psychiatrist believes that Pajama Monster's liver has just gotten fantastic at munching up the Depakote and that's why the levels are dropping. This happens with some meds, especially some in the Depakote family. It sometimes takes several increases over the course of several months to get to a stable level.
My husband and I had been wondering why, despite the increase in dose, Pajama Monster's behavior had suddenly started getting worse. He's been encouraging Peep, who is now potty training, to poo in a bucket in the yard and then hoarding the bowel movements in his play house outside. He's also been playing in his urine and being more generally defiant and violent. I've also noticed that he's been wanting to pretend that he has bags of garbage, piles of garbage, a dump, etc again. This is an old game of his that had disappeared and seems to have come back. He essentially just stuffs toys, papers, etc into bags and carries them around and hides or dumps them places. I don't mind the game, but it is interesting that it shows up when he's having other problems and subsides as his behavior improves.
The final thing I've noticed is that he seems to be wanting to pray for forgiveness for things, was obsessed with idea of writing worries on paper at a wedding ceremony to give up fears, is anxious about things in general, needs to finish tasks, even if finishing is just picking up the thing I set down and setting it down himself, etc. For most parents these would probably be lost in the noise of Pajama Monster's other oddities, but I should probably mention at this point that I have confessional OCD, as do both of my siblings, and my mother. Her mother also had OCD, but I don't know the variety. Onset is usually around the start of puberty, but perhaps it's early for Pajama Monster. I don't want to throw another med into the mix. No one in my family has ever used meds for the OCD. It's just a living hell for a while and then with a lot of focus and practice it subsides into manageable hints of symptoms that we carry the rest of our lives. I think it's time to start pushing the Psychologist to begin addressing or at least considering more strongly the possibility of OCD.
For the moment we're increasing the Depakote again and blood testing again in a month. Wish us luck. Prayers for my Pajama Monster are always welcome.
