Off his meds

The last several weeks have been rough. A little over a month ago Pajama Monster's blood draw showed that his Depakote levels had suddenly skyrocketed for no apparent reason. He was suddenly well above the therapeutic range. Naturally we reduced the dose and our doctor ordered another blood draw to see if the Depakote levels had dropped and to check on liver function. Two weeks later his Depakote was still high and his liver tests were showing overly high scores too. After more tests and reductions it became apparent that Pajama Monster's liver was just not going to keep playing nicely with the Depakote, so the Depakote had to go.

Our psychiatrist recommended Risperdal again and again we refused. Perhaps it would fix all the behavior problems we're having, but it would also make him feel a little sedated and increase his lifetime risk of tardive dyskinesia and diabetes. He's only six. He can't be sedated through his childhood. How will he learn and grow as he's supposed to? No. Just no.

The next and safest option appears to be Lithium. Now we had to decide when to start it. It took about a week and a half to wean Pajama Monster off the Depakote. We were given the green light to start the Lithium increase while we were doing the Depakote decrease, but I didn't want to do that. Pajama Monster has been medicated for a long time. Deep in my heart I kept hoping "What if he doesn't need the meds as much any more.? What it he's matured and can handle things better?" I wanted so much for that to be true. I felt that I owed it to Pajama Monster to at least see how things are off everything. I notified the school so that Pajama Monster's behavior wouldn't be held against him. As we tapered the Depakote his behavior kept getting worse. I kept hoping that we'd hit rock bottom, but that didn't seem to happen till about 1-2 days after we stopped the Depakote completely. We also stopped the Adderall right after the Depakote stopped so that we could start with a clean slate. Surprisingly, his appetite came back as we stopped the Depakote, not the Adderall. I kept hoping that maybe we just wouldn't start any new medication and he's be ok with just behavioral intervetions. By last Monday, a day before we finished the Depakote, we pulled Pajama Monster out of school. He was becoming increasingly violent, hitting teachers, having screaming meltdowns, and usually had to be removed from the class for the entire day starting at 9:15. School starts at 9:00.

I think we've finally hit rock bottom. We started the Lithium 2 days ago. Pajama Monster has been poking holes in his wall and scratching up his bed. He pooed on the floor and the urinated on his bed to make a "yellow Easter egg" stain while I was on my hands and knees scrubbing up the poo. He's urinated down his heat vent, urinated into various containers, even taken the plastic 3 ring sheet protectors out of his art binder to fill them with urine. He threatens to kill me and hits me. He steals and has started removing the pins from door hinges. He has screaming tantrums and can't calm or listen to reasoning or warnings. Much like before "Pajama Monster, please don't do that. No! Do not do that! You will lose your computer time. *Parent moving to stop him* Stop now!" has no impact whatsoever and he's surprised and furious when, after he does whatever it was we were telling him to stop, completely ignoring all directions, he then loses his computer time, or has whatever consequence he's been warned about. He has all the problems he did when we started the medication last time. I didn't want to medicate, but I don't see how he can have any kind of life like this. He can't go to play dates because of his violence. He can't function at school. I just pray this medication is the right choice. I don't know if anyone is out there reading this, or if it's just a place for me to vent, but if you do happen across this blog, and you're willing, prayers for my litle Pajama Monster would be truly welcome.

Not losing sight of hope

As you might expect, we've had a number of ups and downs since the last post. The increase dropped the leukocyte count which then stabilized into the normal range. Our last check showed the Depakote levels as at the top of the therapeutic range, so we're staying at this dose and keeping an eye on things month to month. Last Thursday we had a bit of an off day, followed by a rotten Friday and a bad Saturday and Sunday. On Friday he threatened to bring a gun to school and shoot his teachers. Yes, it was a bad day. Fortunately he's only 4 so he isn't being expelled as he might be if this had happened when he was older. The school called to do a safety check and were very nice about it. They seemed satisfied that Pajama Monster has NO access to guns EVER. I'm hoping that this will all be part of the newly emerging pattern we're seeing. It seems that he has a good stretch of time and then a warning day, several rotten days and then another rocky day and we're fine again. It's hard surfing these and remembering that he didn't pick this, that he isn't just deciding to be a malicious little jerk. Still, it's not as bad.

Even during his good phases he has "stuck" moments usually several times per day. He just gets fixated on something and can't let it go. For instance, he decides that he needs to help stir the treat the kids are making BEFORE he washes his hands. He can't accept any reasons for this not being the case and will just keep screaming about it or fighting to do it till he's removed or till I'm able to talk him down.

Our psychiatrist is considering either decreasing the Adderall or adding some Prozac to deal with his stuck moments which she sees as anxiety based. I had actually been asking that we try decreasing the Adderall after the holidays anyway, but I'm hoping we're not looking at adding anything else in. When he gets stuck he seems so panicked over it. During his bad phases he gets even more focused on controlling his sister too. Being two, her coping strategy is to scream when he does this, so that's tons of fun for Mommy.

All in all I just need to remember that things are better now, and even though they're not perfect, and perhaps we'll always have periods where I need to carry him out from the play date, they are better. He's been able to go across the hall after bedtime to use the potty, a huge step in trust. Previously this always ended in him literally destroying things in the bathroom and making huge messes. We haven't had a real poo or urine incident since Oktoberfest, and I chalk those up to being overtired and overstimulated. I just wish that every day didn't feel like waiting for the other shoe to drop. It's also lonely because most parents of disabled children that I know have children who are autistic or cognitively delayed. I don't know anyone with a bipolar child. It would be nice to have someone going through the same thing to go through this with. Thank God I have a husband who is invested in me, the children and the family. I don't know what I'd do without that support.

Praise and Thanks to God!!

I've been praying for Pajama Monster. I'm a Mommy and a Christian, so of course I've been praying for him. I prayed for his conception and pregnancy and birth, and now I pray every day for him to just be able to have a good life. Lately that's been centering around his medications and health. I believe that God answers every prayer, but sometimes the answer is "no." Today, however, the answer about the leukocyte counts was "yes." Apparently, according to our psychiatrist, in some cases the body can adjust to the Depakote and stabilize the white blood cells. From his latest, completely normal WBC of 8.2, that appears to be what happened. His depakote level is 75, smack in the middle of the range, so we're increasing the dose slightly to see if we can get him nearer the best end of the therapeutic range. It's possible that a month from now my little Pajama Monster could be functioning like any other very gifted little snuggle bug. He might be able to function in preschool without behavioral specialists and go to playdates without needing to leave because of his behavior. Even if we never make it all the way there, this is manageable. Praise be to God for all his help! Without Him we would be truly lost!