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.

He knows everything

Pajama monster often believes he knows everything about everything. He probably wouldn't say it that way, but he does say that he doesn't think he should have to listen to his teacher since he knows so much more than she does, and no matter how great the danger or how firm the limit he's sure he can ignore the limits and danger because he has a smart plan to handle everything. Those plans are almost always pure fantasy and run along the lines of "but if I got a tank and drove it over and used a huge metal pair of tongs to..." He also believes he should be the boss, make the rules, control everyone's actions, and that he has the right to do pretty much whatever he wants whenever he's in that mindset. Grandiosity is a symptom of mania, but seems to be one that isn't talked about a lot in pediatric bipolar. Perhaps it's less common, or just less understood. Perhaps people just chalk it up to bossiness or brattiness, but if it only shows up in a manic episode, it isn't that the child is a brat, it's a symptom of the mania. Frustratingly, this is a chronic struggle with Pajama Monster.

The truth is, he is very bright, and his ideas are often very creative, great ideas, but when that becomes magnified into an inability to join play because he has to change the rules so everyone is following his directions, and an inability to function in Kindergarten without constantly being reminded to follow the rules, it's a problem.

The question is, what do I do about it. Mania doesn't respond to reason. It isn't that he's just not looking at the right set of facts and that's why he's thinking this way. His brain chemistry is making him feel like he's king of the world and so he's acting accordingly. There's no way to argue with that. I can point out the teacher's degree and age and experience, and point out the huge gaping holes in the logic of his plans, but they just don't register when he's manic. He's Superman and I'm just some citizen pointing out that he's wearing his undies on the outside of his costume. He doesn't care. He's Superman!! The only thing that seems to work is to increase the level of supervision till the phase seems to be passing. This is, of course, the very last thing he wants us to do when he's manic, so in some ways we're just causing him to fight against the rules more. The alternative it to let him get hurt though, so we're stuck increasing structure when he wants it the least.

The other thing that has helped some is explaining things from a "because you're awesome and should get what you want" perspective. On some level this is easy, because no matter how much I want to scream at him sometimes, he's my son and I do believe he's awesome and I do want him to get things to make him happy. One of our latest is my explanation on how to get kids to do what you want in play. Pajama Monster's standard MO is to walk up to a group of playing kids, announce some change in the play, then continue yelling, calling and trying to get the attention of the other children while doing everything in his power to get them to follow his new idea. This usually looks something like this: Group of kids are running in circles around a tree roaring and pretending to be dinosaurs. Pajama Monster runs over and announces that he's planting food for the dinosaurs, then tells them to all line up to get their food. The kids at this point are usually just continuing to roar and run in circles. Pajama monster starts calling more loudly, then warning that the food is going to go bad, then that they'll starve, etc. All this time the kids are running and roaring. If by some chance the kids do line up to get the pretend food, Pajama Monster will start micro managing every item of how they line up and what they say to get the food and which foods he will allow them to have, and what happens once they eat them and on and on. It always ends with the kids wandering off to play and Pajama Monster following after them still yelling rules, then being a sad little boy on my lap who doesn't understand why no one will let him play. The upshot of all this is my new "get people to listen to your great play ideas" technique. Step one: Notice EXACTLY what the group of kids are doing. Step two: Do EXACTLY that. Do not add rules or your own spin. Just join THEIR game. Step three: Wait for the kids to show they're playing with you through eye contact, smiling at you or talking with you. Step 4: Suggest (don't order) one of your great ideas Step 5: if they don't like it, wait a minute and try a different great idea, or, if they do like it remember to only decide what YOUR character/self can/can't do.

This is just one little piece. It doesn't fix the help myself to whatever I want and bully my sister and ignore limits issues, but at least maybe it will help him look at ways to get what he wants without just demanding over and over.

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!

Bipolar Children and Poo Smearing

I've read through a number of books on bipolar children. They all seem to have one brief paragraph somewhere in the book that says something about bipolar children urinating in inappropriate places and/or smearing feces. That's it. One brief statement and they're done. The really comprehensive books may say something like "Little is known about this." That's about all they say on the subject.
Yes! I know he does that! Why?! and more importantly HOW DO I DEAL WITH IT?!!
Well, after much research, I'm still coming up empty handed, so here's what we're doing. Maybe this will be helpful to someone else out there dealing with the same thing, or maybe one of you will post here about a good technique you've tried. I should probably also mention that it isn't just poo. He also pours urine in his heat vent, on the carpet, on his bed, in the window sill, etc. Poo he hides, plays with, or smears on carpet, walls, bedding, windows, curtains, and toys. At this age he rarely has much on his body. It's everywhere else.

Poo smearing can be for 4 main reasons: sexual, attention, sensory stimulation, or defiance. I'm lumping anger in with defiance for the sake of simplicity.
The approach to treating the first 3 is much more straightforward, so I'll touch on them because it makes sense to consider those strategies first. I believe Pajama Monster is the last category.

Sexual: In some cases a child who has experienced sexual abuse will act out with elimination issues such as fecal smearing, soiling themselves, bed wetting, etc. In these cases it's obviously the abuse and not the elimination concerns that you want to be addressing. In these cases the behavior is often also accompanied by other symptoms such as sexualized behaviors, tantrums, nightmares, and possible avoidance of the person abusing them. If you think this could be what you're looking at go see a therapist, and prevent unsupervised contact with anyone who had the chance to abuse, at least until you've had a chance to figure out what is going on. This is a case where discipline isn't the answer. This child needs protection and safety to talk about what has happened. Seek the help of a professional and be sure to avoid planting any ideas in your child's head about what you suspect might have happened with leading statements. Not all poo smearing has anything to do with abuse, but I thought I should mention it because it does sometimes happen.

Attention: This one is just straight up behaviorism. Don't provide any response (I know, I want to scream too!) and provide lots of praise and attention when the behavior is not happening. Have the child clean up as much as is developmentally appropriate, but don't clean with him/her because you're trying to minimize attention. Provide a consequence for the behavior but don't comment on it more than to assign the consequence, and make it clear that there are rewards to be had for those who do not do this behavior. It usually extinguishes fairly rapidly once you're not reinforcing it. The reinforcement is your big reaction. ("Rapidly" meaning about as long as you've been reinforcing it, plus a week or two.)

Sensory: These kids are doing it because the texture, feel, smell, etc. is very reinforcing. It feels great to them to squish things between their fingers or smear it on the wall. For these kids you want to provide a sensory appropriate outlet. Painting with shaving cream on the shower wall or a big piece of paper, washing plastic dishes with lots of gentle soap, play doh, finger painting, paper mache, water play, etc. Continue to do your best to limit chances for poo play and provide appropriate alternatives/redirect. Offer sensory play often, and coach the child on ways to ask for sensory play so they don't get the idea that smearing poo is the way to get to play with shaving cream.

Defiance: This one is where we are, and where I suspect most of the bipolar children are. Pajama monster uses a sock or cloth to grab the poo so that he doesn't have to touch it. He also doesn't always smear it. Sometimes he puts it in his dresser, or in a toy, or in his shoe. This tells me it's probably not sensory. He isn't left alone with anyone except daycare, and I've interviewed children and parents from the daycare, and can pop by at any moment to check on him. He also isn't showing any sexualized behaviors, so this tells me it's not sexual abuse. I've tried and tried with the behavioral route. The behavior doesn't respond at all to rewards or consequences. I can literally offer him a choice between pooing on the walls and having a day of scrubbing his walls, or just playing with his toys during quiet play time and then having a treat and going to the park. He picks poo almost every time. There's no lack of consistency with the rewards and consequences. they simply don't seem to have any impact on his behavior. Since I can't make him stop, and this has been going on for several years now, here's what our coping strategy had been, followed by a discussion on our new strategies and the role of anger in this behavior:

1. We stripped his room of everything but a washable toddler mattress and blankets and a couple easily washable toys.
2. I got a carpet shampooer. If I had the choice I'd just have linoleum in his room.
3. I painted his room in high gloss paint (He got to choose the color...light blue.)
4. I tied his ability to choose his own food and have treats to whether he'd smeared poo/urine in the past 24 hours. (I hate to use food as a reward/consequence, but I'm kinda desperate and I wanted to show that he could have more control if he's made good choices.)
5. When he smears poo I calmly remove any remaining large pieces and give him a scrub brush and a couple of wet cloth diapers and tell him he may come out when the room is clean. Without saying anything else I then shut his door and return periodically to check progress. If progress is made, I praise the effort and leave again. If no progress then I just shut the door. Once the room is clean (anywhere from an hour to a day and a half so far)to 4 year old level of capability, I have him sit in a chair till I finish cleaning. He doesn't get to sit with me or interact with me or play during this time. Once I've shampooed out any bad spots from the rug and wiped off any residual from the walls, he may wash up and return to normal life. Obviously he gets to come out for meals and school and doctor appointments whether he's cleaned up or not.
6. We have a toddler potty in his room so that he doesn't get creative in the main bathroom/ hall/ rest of the house after bedtime. It also prevents the "I have to go potty" every 5 minutes battle we used to have at bedtime. He'd spend 20 minutes playing in the bathroom and then would announce he needed to potty as we were putting him back in bed. If we didn't let him return to the bathroom he'd poo or urinate on his floor, despite having spent the last 20 minutes not using the toilet in the bathroom. If we did let him, the cycle would just continue over and over.
7. I keep a small jar of the paint for his walls and a paintbrush handy to do touch ups when he manages to damage the wall.
8. When he was younger we used several strategies to keep him in a diaper. We would put him in footy jammies that were pinned shut with a diaper pin, not a safety pin. Diaper pins have plastic covered heads that are less likely to come open on their own and poke the child. When the pin didn't work we moved to cutting the feet off the jammies and pinning them on him backwards, or even wrong side out and backwards. These helped for a little while, but my son can disable any childproofing device and nothing will stop him from getting out of his clothes now.
9. I explain the natural consequences of his action, such as no friends can come over because the house smells like poo, or we can't go to the park because Pajama Monster needs to clean, etc.
10. Minimize his chances to do it. Lots and lots of supervision seems to decrease his opportunity. I am especially careful when he uses the bathroom or at bedtime. This doesn't always prevent it because I can't be there all the time, but it does reduce it somewhat.
11. I put a cotton cloth about 2.5 feet down his heat vent. He can't reach it there but it will soak up any urine, etc. that gets dumped down there and prevent it from getting deep into the heat ducts where I can't clean it but will have to smell it every time we run the heat.
12. I make sure that the process of cleaning Pajama Monster isn't reinforcing. He gets any soiled parts of himself rinsed off with cool water from the shower sprayer, then quickly dried off and back in his jammies. We don't do the usual long toy filled bubble bath that he enjoys so much or else the smearing behavior just becomes a way to get a bath, thus reinforcing it.

The new strategy: We're using many of the same techniques with two noteable exceptions. We're no longer having him clean alone over whatever length of time it takes him, and we're no longer tying other consequences after the fact. I'm still expecting him to clean, but if he's not cleaning then I hold his hand and guide his cleaning till everything is done, then we wash up and move on with our lives. I'm not sure if this will work yet, but at this point all I know is that what we were trying wasn't working and I'm not willing to spank him (and also don't think that would help) so that leaves us with this.

When a child behaves this way, and it isn't sexual, attention, or sensory related there is usually an underlying anger component. I know this from my years in the field, but what I don't know is why Pajama Monster is mad. Usually I see this when the parent is on meth and neglecting/abusing the kids or there's some sort of extreme emotional abuse, but we have a pretty normal family, and I suspect most of you reading this do too. Pajama Monster is consistently praised and told that he is loved. He has toys and education and playdates and snuggles. The things that seem to make Pajama Monster angry always center around control, and they're unfortunately usually things I can't give in on. We give Pajama Monster age appropriate levels of control, and choices on almost everything else. I'm willing to problem solve and negotiate, but sometimes I just have to say "No." No, you can't take your sister's ice cream. No, you can't play with the electrical outlets. No, you can't have a sharpie. If I were my own client, the first thing I would be looking at once determining the anger issue is how to give Pajama Monster a sense of control, but in Pajama Monster's case there just doesn't seem to be enough control in the world to satisfy him. If he wakes on his own time and picks his clothes and breakfast and fun activities and lunch and generally has free range to make his own choices, he'll melt down because his sister got to pick the pink bowl and he wanted her to have the blue one (We have multiples of each color. He didn't want pink. He just wanted to make her choices for her.) If I structure his day so that everything is nice and predictable for weeks and weeks at a time, he still gets mad every time a choice isn't his, and doesn't seem to care about the routine at all. I feel like I'm trying to fill a bottomless pit of need for control, and as long as it isn't full there will be anger bubbling out of it. I'm hoping that by switching to a "fix it and move on" strategy perhaps I can minimize the anger a little bit and also break the long stretches of time that Pajama Monster is dealing with poo.

Just in case anyone out there was wondering, I should probably also mention that there was nothing strange about Pajama Monster's potty training. We offered praise and rewards and never gave consequences around toileting. He was given a potty at about 18 months and allowed to use or not use it. It was just there in the bathroom when he felt ready. He was around 3 years old when he was done with diapers, but still wearing a bedtime diaper because he still wets the bed. He's never been scolded for bedwetting. We give him control over age appropriate things such as what he plays with, what he wears and what he eats (within limits of course-no marshmallow and chocolate dinners!). I truly don't know where this behavior came from, but it's been a long and very frustrating struggle.