Sensory Processing and Bipolar: A challenging combination

I should probably begin with an update on how my little Pajama Monster is doing on the Lithium. Overall, it's similar to the Depakote. We had a couple of days at the start where he showed much better behavior, but extreme separation anxiety, but that seems to have subsided. One thing that we've been able to notice is that Pajama Monster seems to have a fairly predictable cycle now. It takes him about 3 weeks on his up-swing and 3 weeks on the down. It's not precise, but we can predict within a few days, and know generally how long it will be till things start to look better again. We added the Adderall back in after starting the Lithium and Pajama Monster did beautifully for about 3 days, then all heck broke loose and things got bad and stayed bad. We stopped the Adderall and within a few days he was back to his normal baseline. The upshot of all this was that Adderall helps a great deal with his inattention, but makes him swing manic, so overall not a viable option. We're planning to try a non-stimulant ADHD med such as Guanfacine over the Summer, but don't want to throw another change into the mix with only 3 weeks left in the school year. My inner scientist just won't let me test something when we can guarantee a major environmental change at about the same time. There's just no way to tell which one caused the improvement (if we see one at all).
I think that brings us up to present day, and if not I can fill in the gaps a bit later.

I had considered stopping my blog, but every now and then someone will send me a message that it helped them, and that makes it worth it.

Our Sensory Processing journey:
Since he was little, Pajama Monster has shown some signs of sensory processing problems. It's not enough to explain all of his symptoms. Sensory Processing disorder doesn't cycle, for example, unless something in the environment is also cycling. It may not be the only issue, but it does seem to be one piece of the Pajama Monster puzzle. Pajama Monster is one of those difficult to figure out kids who are both sensory seeking and sensory avoidant. Put him in a room full of children talking and moving around and doing homework and he'll go nuts. He can't take noise and movement all around him. He does seek out responses from people. He says he likes the excited feeling of people getting upset, but not that they are upset. He doesn't enjoy their suffering or the consequences that happen to him, just the stimulation of knowing that he's in trouble. It's a little like that rush of adrenaline you get when you think a car might hit yours, or you've lost something important. You don't want your car hit or your item lost, but if you needed a surge of adrenaline to help you focus, to make you feel grounded, then you might want that experience, even though you didn't want the consequences.
Pajama Monster also seems to seek out physical bumping, rubbing, pressing stimulations. He crawls, jumps off things, crashes into things, and often seems oblivious to food on his face, clothing on backwards, etc. It's as though his brain isn't feeding him all the signals about what is happening to his body. Apparently, this is a common issue with Sensory Processing and can lead the child to feel anxious, ungrounded, and seek the stimulation he's missing. I can't help but wonder if this is part of the reason Pajama Monster is seeking the excitement of adrenaline rush. If he's feeling ungrounded, like he isn't even really sure where his body is in space, it must be very hard to concentrate, especially if a large part of what is expected of you at school is to keep your body calmly sitting in one place. Over and over again I get calls that he's crawled over someone, sat on someone, ran into someone, and moved all over the place and wouldn't stay in one spot. I know he knows he's supposed to sit in one spot, but if he's craving sensory input, the drive to move and crawl and bump may be a little too much to resist. It doesn't make all these behaviors ok, but maybe if I can feed some of that need with something appropriate, he can stop trying to feed it with climbing on kids, irritating his teacher and running everywhere. I still think part of the adrenaline is to address his ADHD focus issues, so maybe the non-stimulant med will help there too. At the end of the day though, I'd rather have him crawl all over the carpet before heading off to school than add another med.

Now, I think I see sensory problems, what to do about it? Option 1, pay for an evaluation and therapy. I'm looking into this, but as my insurance doesn't cover it we're looking at running through our financial resources pretty quickly if we go with this option. I'm still planning to see if I can work something out with insurance, but so far not much luck there. Option 2, research the heck out of everything, contact other moms who have been through the therapy with their kids and try to do some of the first steps at home. While I'm researching option 1, I'm trying option 2. It seems that from Pajama Monster's behaviors, it's deep pressure and stimulation he needs. I'm trying to massage him, brush him with a sensory brush (honestly, it looks a lot like a soft plastic vegetable brush) and generally roll and press him before sending him off to school. Pajama Monster seems to think this is pretty great so far. I'm not using any pressure that he doesn't say is fine with him, I'm keeping pressure to what I would consider normal for a massage, and as always, Pajama Monster is in charge of what is allowed for his body. This isn't a holding therapy kind of thing. I think that if it doesn't help with the sensory issues at least it gives us some positive interactions and makes him feel happy and cared for before heading off to school. After talking to some friends it seems that they have had luck with having their kids slide down their stairs on their tummies, feet first, jumping again and again from a couch to a large mattress or foam beanbag chair, spinning in swings, and jumping on trampolines. Every kid is different, what works for a kid with one set of sensory issues might not work at all for a child with different sensory issues, so I'm starting with the brushing and massage and pressure. I'm thinking of adding a weighted vest for a little while to see if he likes it, and then I'll see what to add or subtract or change. Maybe we'll try some of the stairs or jumping onto a mattress. I'm hoping he'll get his sensory needs met, find a safe way to handle it when he feels like he needs stimulation, and maybe stop crashing into everyone and everything.

On the sensory avoidant note, I've mostly been advocating for him and reminding him to ask for what he needs. Today in a loud restaurant he said "I'm overstimulated!" Yep, I was pretty proud of him! We have headphones in my purse and at school. He can listen to music. I carry a book with me so he can read. He has that option at school too. He can also take a break in a quieter room. He just needs to ask when he's getting overwhelmed, and still do his schoolwork and follow the school rules. That's where we usually run into problems, but at least he has the accommodations there to use when he's making good choices. Maybe if we can fill up his need for physical stimulation he'll be calmer and more focused and can ask for what he needs when his other senses are being overwhelmed.

Oh my little Pajama Monster, you certainly keep me learning new things!

The level system

Among all the things we've been trying to find for Pajama Monster, a set of rules/consequences that works at all stages of his cycle has been near the top of our list. I think I finally have one, though, as always, Pajama Monster ay throw us all for a loop later.
What we realized is that any system has to fulfill several criteria.
1. It must keep everyone safe all the time
2. It must not punish for negative behaviors (from the down swing) so that the up swing is spent "paying for" what he did previously. This would just rob all of us of any chance to bond, and rob Pajama Monster of his chance to feel successful and rewarded for making good choices
3. It must include appropriate consequences for inappropriate behavior
4. It must work for all phases of his cycle
5. It must be clear to Pajama Monster that he CAN earn trust and rewards, and what it takes to do that

What we came up with was a level system. Negative behavior, such as we see a lot of in a down swing, moves you back. Any day you make good choices (and the bar is set pretty low here) you move 1 day toward the next level. We've got 5 levels. 0-4. Level 0 lasts 2 days, the rest last 1 week. Level 0 is pretty much full restriction. If you're on level 0 you're there for being unsafe, destructive, or consistently causing serious problems. You're in your room or with a parent. Supervision is constant, and no electronics are allowed. Level 1 you can have your electronics, chime on your door at bedtime when we can't supervise because we're sleeping, and 15 minutes on the computer. levels 2-4 add privileges with each level, as we are able to trust more that destructive behaviors won't happen.

We've got 3 categories of infraction, 4 if you count the ones that we just remind him to stop or send him to time out for.

Losing a level:
You can go all the way back to level 0 if you set fire, injure someone such that they need medical attention of any kind, or destroy something your parents define as valuable. (This would include, for example, when Pajama Monster used a rock to dig huge scratches in the new windows we just had installed.)

You can just not make your day (not advance a day) if you're refusing to do the basic things asked of you, generally defiant with warnings to stop, etc

You can go back one day for minor destruction, stealing, hitting, etc.

It sounds complicated, but we just have a little print out with the privileges at each level, the ways to not "make your day" and a little line at the bottom with 7 days marked on it. I use a dry erase to move the mark for which day he's on.

The thing that I like about this is that we can use it for Baby Peep too. She makes her day more often, but we can show Pajama Monster why she's allowed to have some privileges he can't have, and exactly what he needs to do if he's like the same privileges. I trust her to have pencils in her room because she has made safe, non-destructive choices for 4 weeks. If she chooses to stab holes in the wall or scribble on the furniture, she'll lose that privilege, and if you choose to make safe, non-destructive choices for 4 weeks you may have pencils in your room too. It also becomes more restrictive, focusing on supervision and safety if he's making bad choices, and lightens up, giving him more trust and more freedom as he has more and more days where he makes safe and reasonable choices. One thing I wasn't expecting, it helps my husband and I remember to let some things go. If he's not hurting anyone, destroying anything, bullying, or refusing all day to do the basics that he has to do (brush teeth, pick up his stuff, do your homework, not scream threats and defiance at me) then he's doing what we expect and little slip ups are easier to let go.

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!

Not the Mommy I'd like to be...

I'm not the energetic, always ready to play Mommy that I'd always hoped I'd be. The truth is, I'm drained. It seems like Pajama Monster needs so much constant supervision that when he is sitting and wanting to play with Mommy, all I really want to do is go in the bedroom and hide from the chaos for a little bit. I want to drink a whole cup of tea, or eat a whole bagel without having to stop Pajama Monster from bullying 5 or 6 times and redirect him back to his task another 15 times and then stop him from various other defiant acts another dozen or so times. Breakfast alone generally requires this number of interventions. I'm not a super picky Mommy when it comes to breakfast either. I'm pretty happy if the kids stay at the table, eat something, and no one is screming.

That being said, I know I need to play with the kids but often struggle because I am so drained. It's the emotional exhaustion that comes from needing to intervene at least once a minute for hours and hours at a time. It's from never knowing when a mood swing will happen. It's the weariness that comes from people raising an eyebrow at me when Pajama Monster acts out, and also coming over to lecture me when I do intervene early to prevent the acting out because somehow that's wrong too. If I give him meds I'm an irresponsible unloving monster who wants my child to be a zombie, and if I don't then I'm a worthless incompetent mother who is clearly causing his behavior. If he is having a good day then I'm exagerating and "overprotective," but if he's having a bad day then I get lectured on his bratty/violent behavior. Last week a mom freaked out at a playdate because her child urinated behind a tree and my son was trying to play in it with a stick. I didn't ask why she thought it was reasonable for her son to be urinating with an audience in the first place. That's what I get for turning my back for a second to hear what Peep was asking me.

I feel silly and whiny saying that I don't have the energy to play legos and cars, but sometimes it just feels like I can't handle the strain of wondering when the next problem is going to start, or who is going to try to shove their unwanted judgements down my throat while I'm elbow deep in another Pajama Monster meltdown. When I'm not feeling worn down I can just ignore most of these, but some days it gets to me. I do find myself reading a book at the counter some days, or taking my laptop out to the kitchen and reading or surfing when I could be playing, then I feel guilty because I know Pajama Monster wants to play. I love him so much, but sometimes I wish he had a 10 minute pause button, just so I could catch my breath and collect my thoughts. I've tried many times to add in a little structured Mommy/kid exercise time or yoga time, but Pajama Monster just can't handle it. If I'm not playing his game his way with him in control of my every move then it doesn't count for him as being played with. I know that this just shows that he needs play time even more because he needs to build his play skills, but some days it's hard. I suppose that's just part of being a Mommy. It's just magnified with the bipolar.

I whined to my husband about feeling worthless because I'm so tired while other moms are out there baking fresh bread every day and chairing the PTA. My husband reminded me that on top of the parenting those moms don't have all the therapy appointments, psychiatry appointments, special ed. meetings, social skills meetups, support group meetings and also probably don't have to shampoo urine out of the carpet 4-5 times a week. That made me feel a little better. Maybe other moms aren't really doing more, but just doing different. Society spends so much time telling us that Bipolar isn't real and meds are unnecessary that some days I guess a part of my brain (albeit a dumb part) buys into it and wonders why my life feels so hard.

And the Saga Continues...

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.

Leukocytes and Depakote

We just got the last of Pajama Monster's blood test results back. The Depakote levels are in the low end of the therapeutic range, so based on behavior (he's for instance tearing the plastic covers off the toilet bolts and flushing them, slapping Daddy, etc.) we can increase now. All other readings look great EXCEPT the leukocyte count. It's very slightly below the normal range. The leukocyte count is a measure of white blood cell/immune system health. Essentially, there is a chance we're improving everything in our lives and Pajama Monster's life at the expense of his little immune system. The levels aren't dangerously low...yet. We're doing another blood test in 2 weeks to see if they're still low or if it was just a fluke caused by something else.

This is the best things have ever been and in 2 weeks we may be right back where we started from, trapped in a stinking house full of poo and urine soaked carpet with a son laughing hysterically as he carves up the drywall and attacks his sister. I don't want to stop the Depakote. I really, REALLY, don't want to. I want to increase it to the top of it's therapeutic/safe range and see if things can just be normal then. I don't want to move on to heavier duty/scarier meds and I don't want a complicated huge med cocktail, but above all I don't want to endanger my child. Sadly, that leaves me with only one choice if the Depakote is trashing his immune system. I suppose all I can do is try to enjoy things for the next 2 weeks and pray that the low leukocyte count is a red herring. Why can't anything ever be simple? At least we've had a few weeks. We went to the zoo and went out to eat and got coffee and it was wonderful! Sometimes we ended up boxing our food up and carrying a screaming, hitting Pajama Monster out of the restaurant because he was mad that his noodles won't stay on the fork, but that didn't happen every time. It used to be about a 90% chance that the evening would end that way, but now it's more like 20%, with about an additional 40% chance that we'll have a couple incidents that require removing Pajama Monster to let him calm down. That used to be a 100% chance. It's not perfect, but it's so much better and the fear of losing all this is killing me. If anyone out there is reading this, prayers for my little Pajama Monster and his immune system would be very much appreciated!

That Was Fast!

Pajama Monster had his blood draw yesterday and subsequent McDonald's trip. He again handled it better than I could have hoped. Even McDonald's went well till he randomly dipped a toy in ketchup from the trash can and wiped it on my face. Apart from flushing part of our toilet paper holder down the toilet, the evening wasn't as bad as usual either. The Depakote blood levels came back at 66 with a normal range of 50-100. I've e-mailed the psychiatrist with an update on Pajama Monster's behavior but she won't be available till Wednesday. I'm not sure if she'll want to increase the dose further or not. I think I'd be much more in favor of that than in adding any new med into the mix.

We seem to be ahead of schedule though. We should be heading into weeks of hell about now. Despite that, with no change or increase in the medication, Pajama Monster had a great day today. He got in trouble for a few minor things and calmed down rapidly. That seems to be the biggest difference we see on the Depakote. Even when it isn't stopping many of the negative behaviors as it hasn't been for the past week, it seems to allow him to recover and return to normal behavior MUCH more quickly. I'll find him in time out playing calmly on his floor after just a couple of minutes, which is what I would consider a normal time out. Before the medication it was normal for time out to basically just function as containment till he appeared safe to be out of his room without hurting anyone or destroying anything. That would sometimes be hours of screaming, poo smearing, throwing toys, kicking the walls, etc. Now he's sitting on the floor playing with blocks when I go in to check on him.

The other thing we're noticing is that while there still is obviously a cycle happening, it's not the same as before the Depakote. Normally there were many many swings in any given day. We'd have a number of very bad spells lasting weeks, and then onece or twice a year we'd have a good spell lasting a few days to a week. Now we've had several pretty good weeks with one week of moderately bad behavior and now seem to be improving again. It's impossible to say how this will play out again, but I was really expecting each day to be worse and worse followed by many weeks of truly horrible behavior.

Reading over my own blog, I sound bipolar. One post I'm full of hope, the next I'm beside myself, then optimistic again. That's what life is like with Pajama Monster. Each day brings something new and we simply have to take things as they come, reveling in the good times and gritting our teeth through the bad.

Here we go again...

Well, yesterday was rotten. It started Friday when we had a playdate with a little boy from school. Pajama Monster had a great time but got way too wound up and started acting out by ripping things, pouring juice into their carpet and repeatedly sticking the cat's loose catnip in their shoes. We ended the playdate and I tried to get Pajama Monster back on track, but he continued to be off for the rest of the day. When he's in that state he just does lots of little things he know he shouldn't do. It's the push buttons, stick your feet on the table, throw the toy in the trash kind of behavior. He does each behavior very deliberately and is delighted when we see it. Saturday was a constant series of such small acts of defiance. We managed to go out to eat but Pajama Monster had to be taken out of the restaurant at one point because he wouldn't just sit and eat but insisted on deliberately doing the opposite of everything he was asked to do, loudly.

On Sunday Pajama Monster started again acting out in little ways, then threw a bunch of the sugar packets in the trash at the coffee shop, refused to take his time out and was generally rude and loud and defiant. He's been hitting off and on for the last several days as well. That was the end of our family fun for the day. When he acts like that we have to give up all family plans to go out to eat or visit a park, etc. and just go home. If we don't it gets progressively worse and always ends in him screaming and hitting and unbuckling himself and running frantically doing as many bad things as fast as he can. We took him home from the coffee shop and tried to get him calmed down but the rest of the day was just a series of little incidents of him picking at people, being defiant, and trying to make everyone upset. They weren't horrible individually. They were just constant little things like pulling all the towels down so I'll have to pick them all up and put them away again or yelling and being loud whenever we tried to sing Peep her lullabies at bedtime. It wasn't full strength Pajama Monster, but it feels like we're headed there.

This morning I woke up and had to walk him through potty and toothbrush time. He claimed he didn't have to urinate. I asked him to play for a little while and eat his banana as I nursed Peep. When I came back I found that rather than playing he had elected to squat in his doorway and urinate into the hall carpet. He has a potty in his room and is across the hall from the bathroom. There was no reason and he wasn't remotely sorry. He just wanted to be rotten, yet again.

I feel like this is just our reality. We all get dressed and ready to go do something as a family and then Pajama Monster starts acting out and we all just get to sit around the house wishing we could do the same things everyone else gets to do. I have this fantasy of walking along at a beach or science museum or zoo or campground with my husband at my side and our two babies running around exploring. It's just a fantasy though because the reality is that my husband wouldn't be there. He's unwilling to be out somewhere that far from home with Pajama Monster because then we're stuck there dealing with him when he acts out and he's much harder to contain. The reality is that we usually don't get to go at all, and when we do it's just me with the two kids trying to contain Pajama Monster so he won't just suddenly start running around trying to break, damage and destroy.

For almost three weeks it felt like we had an answer. Pajama Monster was playing and laughing and reading his first Dr. Seuss book all by himself. He was snuggling and arguing with his sister and playing with her and apologizing when he did something wrong and getting excited about playdates, but then it just seemed to start swinging back the other direction. I'm afraid the psychiatrist will suggest adding yet another med into the mix. I don't even want the ones we're already using. I'm not sure how much worse things will get on the Depakote. So far things are looking better than they used to, even if they're not what I was hoping for. How much does it have to help to be worth giving to a four year old? My thought is that it would need to help a lot to be worth the risk.

I feel like I spend part of my days angry and most of the time heart sick. I just want him to go through the day without gleefully going out of his way to make everyone's life miserable. I can handle fighting with his sister and the occasional pushing or hitting, and tantrums when he doesn't get his way. I can handle the testing limits and the questioning things and even the whining, but this is different. He gets a look on his face and you realize that he can't be trusted for a second because if he has a pencil he'll use it to stab holes in the couch and write on the walls. If he gets a bath he'll bale the water out all over the floor. He'll take the dirty diapers and hide them under the couch and smear his own poo everywhere. He'll throw garbage in your tea when you're not looking and then knock his sister into the wall because he doesn't like being told he can't have another pencil. They're not huge things but they're constant. I'm trying so hard to help. We've spent years trying to help him name the feelings he gets when he's acting out and trying to get him to tell us when he's feeling that way. We've worked on countless calm down strategies and methods for us to soothe or help him self soothe. I play with him and comfort him and cuddle him and read to him and do art projects and activities and outings with him, but nothing changes. In the middle of every moment is the knowledge that he still will routinely ask for a kiss and then spit on my face or pull my hair when I lean down. Knowing that I have a bad back and it hurts me if he jumps when I hug him, he'll consistently as for a hug and then just jump and pick up his feet, whenching my back but secure in the knowledge that I'll throw my back out rather than let him fall. But what's my choice? Should I refuse to ever hug or kiss him? I'm just not willing to do that, so I get spit on and hurt and spend my days scrubbing poo, because I'm Mommy and that's what he seems to think I deserve. Some days I think he hates me, but then I have to sit and remember his illness. No one would choose this. It's not his fault. He doesn't hate me. It just feels that way.

Attachment and Reconnecting

I know I'm getting ahead of myself since we don't know that the Depakote will continue to work. If he continues to do better and then worse we can't keep upping the dose or it will become unsafe. That's just not an option. Still, he's my baby and I'm going to hope this time because I feel like I have to. I love him and I want this for him so badly there aren't even words.

As Pajama Monster has more days that bring no more than normal Preschooler problems I'm beginning to look more at our attachment. I feel that being forced into the position of warden for so long, just to keep the family safe, has done damage to our bond. Pajama Monster is still a snuggle seeking, Mommy loving, little boy, but I've noticed him seeking out more mommy cuddle time lately and being more upset if I'm not available all the time. I think he's wanting to strengthen his sense of trust and attachment and I want to help him with that. I'm beginning to be able to go back to more AP methods of discipline. We still have time outs, but they're more rare, as Pajama Monster has become more responsive to invitations to problem solve together and reminders of how his actions make people feel. He's more easily redirected with silly games and new activities.

I find that I'm struggling with my own fears any time a behavior looks like one of his old problem behaviors. For example, when he was getting ready for a full scale destructive, hitting, etc. fit, one of the first things he'd often do is flip open the gas tank door on our car. Usually it was the gas cap several times then running and hitting while I buckled him in, then unbuckling himself over and over while screaming at the top of his lungs and kicking my seat and knocking the head rest up so I couldn't see behind me. He'd also harass and attempt to hurt his sister if he could reach her, and generally be as rotten as possible till I could carry him, pinching and screaming and hitting, into his room where he's poo or urinate on everything. The action of flipping open the gas tank door itself does no harm, but we didn't want him opening the gas cap, so he has been asked to leave it alone. It's just an association, but when he did this yesterday I could feel my adrenaline rising. I was able to ask him if he was hoping for a good ride home playing games with Mommy or a bad ride home, and what things he'd like to do. He made up a silly game of Mommy saying "Microwave, Microwave, What are you toasting?" and he'd answer with various silly options. We had a good ride home playing the microwave game and a nice evening, but my initial gut response was to overreact because jumping to maximum containment was what had always been required in the past after this small act. I can't overlook my gut responses because they'll help to tell me if we are having a bipolar episode, but I don't want to overreact just because things have always been bad in the past. I'm sure that as thing/if things continue smoothly over time I'll begin to lose the knee jerk panic reaction, but for now it's something I really have to work on.

We've always used attachment (or what I consider respectful parenting) approaches as much as is safely possible, but here are some attachment techniques that I'm beginning to resurrect:

* Reminding of the impact of his actions and checking to see if that's what he wants
* Offering a silly distraction or humor to diffuse a situation
* Sitting with Mommy to calm down when he's getting wound up
* More snuggle reading time, mostly because he doesn't spit on or pinch me lately
* Offering help problem solving
* Calling a re-do because we're not working as a team

Wish me luck and I'd love to hear anyone's experiences as you navigate through the roller coaster of life with a disabled child.

A Bump in the Road

Last weekend was not good. It wasn't full strength Pajama Monster rotten, but my husband and I saw it as an indication that these last few weeks were possibly just the good end of a swing and we were headed straight back into hell again. Saturday felt very ADHD. He wasn't malicious but just very impulsive and whiney. Sunday brought us back to bipolar land with it's destruction and urinating on the heat vent, etc. We've been mostly poo and urine behavior free for the last several weeks. We had about 2-3 days of rotten and increased the dose to 4 pills of Depakote (actually available in a one pill time release formulation now)on Sunday. This wasn't related to the swing, but rather just the schedule we'd already agreed on with the psychiatrist. Things have been mostly positive since. The kids have been playing together with only minor sibling issues. For example Pajama Monster pushed Peep off a step this morning because she wouldn't move when he asked her to. He did admit it though and took his time out and went back to normal life. For the first time time outs are starting to feel like they were intended to be: a short break for Pajama Monster to pause, calm, and change his behavior before coming back to play. For over a year now they've felt like nothing more than a way of containing him when he's attempting to hurt us and destroy things.

We'll do a blood draw (and McDonald's trip) early next week to make sure things are still in a safe range. We're seeing no signs of side effects, but this isn't something to chance. If things continue to work Pajama Monster will stay on the same dose and do blood draws about twice a year to make sure everything stays at safe levels. It makes me cringe to have him on Depakote, or any med for that matter, but he feels like a happy, creative, bright, funny little love again. I still see no signs of flattening or drowsiness or fatigue or spaciness on the Depakote, so I'm just going to pray that maybe this really is the answer we've been looking for.

That's not what "Sensory Friendly" means

In the area I live in we have a local play area that consists of a few giant rooms full of bouncy houses, bouncy slides, etc. Normally there is also loud music and crazy lights going on. In an effort to be autism friendly they have stared opening their doors once a month for a "sensory friendly" bounce time. The problem is that this means everything is as usual minus the crazy lights and a bit of the volume. What that leaves is 3 giant rooms full of incredibly brightly colored bounce houses, still loud music, fans to inflate the houses, fluorescent lights, screaming and running children and general chaos. I appreciate their attempts to make the environment more friendly for children with sensory issues, but they obviously don't understand what sensory processing disorder means. If I only had to worry about rooms with bright flashing lights and blasting music I just wouldn't take my son to any rock concerts and we'd all be fine.

Sensory processing disorders can take many forms. In Pajama Monster's case it means that he has poor motor planning and doesn't seem to be able to filter outside stimulation very well. He essentially doesn't know where his body is, and so steps on other children, trips, falls out of his chair, Godzillas his way through other people's games and is generally clumsy. He also has a lot of trouble on play equipment and is therefore unable to join in with other children on playgrounds. That's all the motor planning piece. The filter problems essentially leave him feeling overwhelmed and frantic when he's exposed to noise and visual stimulation. I think this is why the supermarket is so difficult. It's full of bright lights, loud sounds and lots and lots of bright packaging. Our current method of grocery shopping involves an MP3 player with headphones, sunglasses and a thick green smoothie with a skinny straw. I'll sometimes substitute almonds for the smoothie. The sucking and chewing stimulation is soothing.

Imagine you're in a room full of people all trying to get your attention while you try to read something important from a book that keeps flashing random pictures at you as someone taps you on the shoulder incessantly. Imagine the stress you'd feel trying to sort through the chaos to the information you really need. For some children this is just their average day. Everything they encounter is one more "look at me!!" If you sit and listen for a moment you'll probably hear the noise of your heater, perhaps cars outside, maybe the computer fans. If you focus you can probably feel the seams on your clothing and your hair brushing your neck. Imagine if every one of these sensations was vying for your attention. I think that's part of my little Pajama Monster's life. Fortunately Pajama Monster's case isn't as severe as some children I've met, but it certainly influences his coping skills. For now it means that no matter how much fun sensory bounce may be, I usually need to stay away because we will have a meltdown of epic proportions and meltdowns are damaging to a child's self esteem long after the meltdown has ended.

One large frustration right now is that all the providers seem to be playing hot potato with the sensory problem. I've been told by the pediatric Psychologist, the school OT, the insurance OT and the initial IEP OT that they believe there are sensory issues involved in Pajama Monster's problem. Unfortunately unless he can't use a pencil the school won't touch it. The psychologist simply isn't qualified to treat it, and the insurance OT doesn't treat sensory processing disorders.

With so many things going on at once how do I tease out sensory issues from ADHD from Bipolar disorder? Well, I may not always be right but it's partly gut instinct and partly that sensory leaves Pajama Monster with a "deer in the headlights" look of panic on his face. ADHD leaves him with an "Oh no! I forgot!" surprised look, and bipolar leaves him looking both delighted and crazed. I'm not sure where the heartbroken and panicked look over trivial things comes in, but I suspect anxiety, perhaps because he's feeling off kilter becasue of sensory or ADHD issues. I suppose it's fortunate that for most of these the most helpful thing I can do is hug him.

Impact on Mommy

I should probably start by saying that I realize my husband is equally impacted. For a long time he talked about wishing he could stay at work because dealing with Pajama Monster can be so horrible, and quite honestly after a day of Pajama Monster I'm not always the happy and encouraging wife I'd like to be.

I went into motherhood expecting some stretch marks, etc, but I thought that the majority of the impact would be from the pregnancy and possibly the delivery. I've found that for every year Pajama Monster ages I seem to age 5. When I gave birth at 29 I could have passed for 23 pretty easily. Now I look older than I am. My hair is thinner. I'm exhausted all the time. My face looks thinner and older. To cap it off, I've been having dizzy spells so often that I've ceased to even note them. I'm pretty sure the dizzy spells are coming from neck tension and stress, but that doesn't make them any more fun. I realize that at 34 I was bound to start showing my age, and self care certainly tends to fall by the wayside when you have little ones, but this feels far in excess of what I'd expected. I think it's just that with stress, worry, and depression, my constant enterage, I'm bound to be in worse health. I'm not depressed by nature. It's just hard to see the bright side when you're scrubbing poo out of a stinking carpet for the 6th time that week while your husband holds your son in a restraint to keep him from smearing the poo on you and Daddy.

Depakote for my Preschooler: Still Promising

OK, I think I may be ready to get my hopes up a little. It's been several weeks now. We're up to 3.5 pills and things are better. They're not perfect. Pajama Monster has normal preschooler naughtiness, which is fine. He also has weepy moments where he gets "stuck" on something and really needs time to calm down. We use the explosive child model for those. The third and final behavior problem seems to be the old Pajama Monster problem, and that's where we're seeing the most improvement. We're seeing less of the random defiance, less manic laughing, less seemingly random or just bizarre destruction. The poo smearing and urine behavior are still there, but marginally better. Evenings after about 5PM are the hardest, though I wonder if that's related to the Adderall wearing off completely. We may switch from Adderall to Strattera after we see what's going on with the Depakote for another month or two. The best part...people are starting to comment that Pajama Monster seems to be doing better. Oh please, please, please be the right answer for my little baby!

Depakote: Better but not great

I'm not sure how this roller coaster will end, but the Depakote does still seem to be helping. Last night Pajama Monster poured urine into a mechanical toy firetruck and later in the evening he smeared poo into his carpet and window. I made him clean it last night so we could start fresh in the morning. Today we had a good morning and went to play at a coffee shop/play area. Fun was had by all. We came home and Peep took a nap while Pajama Monster ate lunch and played outside. All was well till I attempted to go grocery shopping. Peep started screaming and I discovered that Pajama Monster had bitten her because she was sitting too close. I removed Pajama Monster and attempted to grab the last few list items. Pajama Monster proceeded to waffle between defiantly throwing things on the floor, and contentedly walking with the cart. On the way out he threw a stack of gift cards in a nearby trash can. We went home without further incident and Pajama Monster spent the next 15 minutes in his room in time out with the door open. He was sent back to time out about 8 more times over dinner for things like throwing his fork and various defiance. The sad thing, this is still better. During a normal Pajama Monster incident there would have been much more violence both toward myself and Peep, and he would have smeared poo or vandalized something in time out. He also would have been horrible on the ride home and would have escalated steadily the entire time at the store and would currently be going out of his way to make my life unpleasant instead of playing with his sister as he is currently doing. All in all it was terrible grocery store behavior, but really, not unmanageable, certainly not compared to what I'm used to. It's not the miracle pill so far that I had hoped for, but it's still better, assuming this isn't just a mood swing that just happens to coincide with the Depakote instead of being caused by it. I just hope things don't get worse from here. There's still every possibility that the psychiatrist will increase the dose in another week, which may improve things as well. I hate to get my hopes up, but this time I think I may still be seeing a glimmer of hope. We'll see what bedtime brings.

Medication vs. Overmedication: How to tell the difference

I was doing some random web surfing and came across the case of Rebecca Riley. You can google it or find an article here http://en.wikipedia.org/wiki/Rebecca_Riley The photo in this post is of little Rebecca, not Pajama Monster or Peep.

The upshot is that a little girl who was only 4, Pajama Monster's age, died after her mom and dad and psychiatrist drugged her to death. I'd like to say that I don't understand how this happens. After the fact many people spoke of the child walking into walls and needing to be carried because she was in a stupor. The sad fact is, I've seen this. I knew a child who was drugged to the point of inducing seizures and was functionally a zombie. Fortunately she had a very good psychiatrist who stopped the medication as soon as I reported this. The sad thing was that I only saw her after 9 months on those meds, and neither school, nor parent had said a word. The parents opposed stopping, but the psychiatrist didn't give them a vote, because he wasn't ok with drugging children into submission.

The point of my story? Not all pediatric psychiatrists are pill crazed maniacs. Actually, most aren't. An appropriately medicated child should seem normal. You should have no idea that they are taking anything. They shouldn't seem sedated or lethargic or have memory lapses. They shouldn't be extremely quiet and easy to manage. If you can tell they're on medication, especially at 4, then something is wrong. Talk to your doctor and tell them that zombie-preschooler isn't ok. Try a different dose or a different medication. How do you tell if they're overmedicated: when you see the meds and not the kid, or when anyone has any idea after meeting your child that he/she is on medication. That's how you can tell. Your child should have personality, and lots of it. If they don't, something is wrong. You should also never medicate anything that can be handled by other means. If your child isn't sleeping, move the bedtime, try a new bedtime routine, star charts, etc. If your child sasses you, use behavioral techniques or I'm sorry but you may need to grow a thicker skin. Meds are for problems that are hurting your child and making them non-functional. They're for the 2 hour fit and smashing walls and stabbed my sister with a fork kids. They're not a shortcut to compliant kids without the hard work of parenting. Most of us have climbed this mountain with caution and forethought and love, but sadly a few just want meds to shut their kids up and they're the ones that everyone sees when they think of childhood medication. They're also often the ones whose kids are reacting to poor attachment and poor parenting and don't really need the meds in the first place.

A child that is sleepwalking through their childhood is missing more developmental stages than I can count. As they fall farther and farther behind they will appear more and more immature relative to their peers. Also, don't mistake sedation for "good behavior." Many parents respond to this lack of development by requesting more meds. If your 8 year old has been a med-zombie for 3 years and acts like a 5 year old, tantruming and not sharing and poor manners...it's because he is 5. He's missed 3 years of his life and is stuck at the last developmental stage in which he was fully conscious. The problem is that even un-zombied he will have trouble catching up because severe immaturity is not well tolerated by other kids. Teasing and shunning will make him even more socially awkward. The safest bet is to never put him in that situation at all.

Rebecca Riley's case was tragic. It was horrible and there is simply no excuse for something like that happening, but it isn't a portrait of pediatric psychiatry. It is a portrait of medical abuse facilitated by a monster or an incompetent, possibly both. Sadly, people point to this as the reason children shouldn't be given meds. It isn't a reason to avoid medication. It's a reason to avoid incompetent psychiatrists (If they let you pick the meds and dosage, possibly even giving your child other people's meds...go elsewhere and also report them!). It's also a reason to watch your child carefully for sedation and other side effects. It's a reason for trying everything psychotherapy has to offer before even considering medication and for having a very thorough, not just one visit, evaluation done before considering medication. It's a reason for being open about your parenting, even the parts you're not proud of, and for allowing your child's team to talk to school and daycare, etc before prescribing medication. Medication isn't always the answer. It frequently isn't the answer. Think long and hard and try everything less drastic before considering medication, but don't rule it out because one parent did something truly horrible, That's like avoiding bathtubs because Andrea Yates drowned her children in one. Like Andrea's children, it was the sickness of her parents that killed Rebecca Riley.

In summary:
1. Don't mistake sedation for "good behavior"
2. Never try meds before you've tried every less invasive method. Yes, I know it takes a long time.
3. Never be afraid to seek a second opinion if the meds seem too much
4. A sedated kid is not a properly medicated kid
5. Meds are not a parenting shortcut and should never be used as one.
6. Some kids truly need meds. I know what that feels like. Have some sympathy for parents trying to find help for their child. Giving your child medication can be a decision made of love. Don't judge based on a glimpse. A bipolar child is bi-polar, meaning 2 polar opposites or 2 opposite ends of a spectrum. They bounce between extremes so of course they have wonderful moments. For many of us the decision to try medication is painful and frightening. Judgement only makes an already difficult decision that much more painful. Try to see things through our eyes before you tell us what we should be doing. We'll try to do the same for you.

Depakote update

It's been almost a week on the 3 pills Depakote dosage. We've had some ups and downs, but the downs seem less extreme and more brief. Last night Pajama Monster smeared poo again, but it was about 3 tiny fingerprint spots on his floor, one small streak on the wall, and a handfull of little fingerprint spots on the window. Normally these incidents are epic and require at least an hour of carpet shampooing and wall scrubbing and window cleaning etc. I'm not thrilled that it's happening at all, but this is MUCH better. I'd also found 2 tiny poo marks on one of his outlets earlier in the week, but other than that he hasn't had any poo incidents in almost a week. We had an incident on the bus with Pajama Monster refusing to sit in his seat, but he wasn't violent and it sounded like he was just trying to sit in a different seat. The busdriver informed me that if she has to get the teacher for help again Pajama Monster will no longer be allowed to ride the bus, but as we walk to school in the mornings anyway, that would just be an excuse for me to get a little more exercise. On the list of things I'm stressing about, walking 1/4 mile in the sunshine with my kids for the next 6 weeks doesn't even register.

Apart from the decreased violence and the crying over things (which I think may be part of Pajama Monster or Adderall and not Depakote related) Pajama monster has been feeling like a normal 4 year old boy at times. Right now he's playing with the stacking cups with his sister on the kitchen floor. The strange thing is, he's been playing with her for almost an hour. Normally they'll play for about 5 minutes and then the screaming and bullying will start. In short, he doesn't seem sedated or flattened or numbed or zombied or any of the other things I was afraid of. When he's not acting out in his old ways, which he's been doing much less over the last week, he just feels like a very bright, funny, creative and loving little boy. Welcome back, Pajama Monster, please stay!

Oh Please, Please, Please! (Depakote)

Pajama Monster had his depakote level blood draw last Thursday. The level was 40, with a normal range starting at 50. We were advised to increase the dose to 2.5 pills for 3 days, then up to 3 pills. We started 3 pills Sunday. Over the last several days things have seemed better. Pajama Monster has crying/panicked fits over seemingly trivial things, but can be calmed down with patience, especially if I catch it early. I've also been working to really minimize any unexpected changes. I'm not talking about large changes. We've always prepared him for large changes. I mean the small ones such as me throwing away his empty yogurt container after breakfast or vacuuming his room. He seems to need extra warning for these changes or else they can start a crying fit. Other times he hardly seems to notice them. Apart from that, things have been better. We haven't had a poo or urine incident in 2 days. I'm hoping and praying that this will make the difference. He's continuing on the Adderall as the ADHD does seem to be a consistent struggle for him. I'm not expecting that Pajama Monster will have "perfect" behavior. He's a 4 year old little boy. I don't mind that sometimes he gets mad or doesn't want to listen or won't share. That's what I expect. He's 4 (and I realize he'll still do things I don't want him to at any age. He's his own person.). I just want to be able to do the things most other families can do. I want to be able to go to the park and go grocery shopping and let the kids play together in the yard. I want to be able to check on him when he sleeps without being afraid of what I'll find.
If this is enough to stop the destruction and poo smearing and seemingly random defiance then I'm done adding meds. I know many kids have a very complicated "cocktail," but I'd rather handle the crying and need for very very gentle handling around changes without any additional meds. He can function like that, and so can I. That's no judgement against parents who have their children on more complicated cocktails. You have to provide your child with what is appropriate for his or her specific neurology. I'm just hoping that we won't need more. I'm afraid of the impact on Pajama Monster's development with all these meds, but I see the impact of growing up completely unable to function in normal society as worse. As long as he can function, the rest comes down to parenting, as my husband says. I know I'm getting far ahead of myself, but I'm hoping so much that this time the med will help and it won't just be another piece of a mood swing that we're seeing. Our pediatric psychiatrist wants Pajama Monster to continue on the 3 pills for 2 or more weeks and then consider increasing to 3.5 or 4 pills if no side effects appear. We will also do another blood draw to check levels. Oh Please work! Please! Please! Please let this all be over!

The last blood draw was no problem at all. Pajama Monster handled it better than most grownups. I'd laid the groundwork by mentioning there is a policy (my policy) that states: Kids who get blood draws get to go to McDonald's afterwards. Pajama Monster actually began asking if he could get a blood draw so we could go. The actual blood draw caused no more than an "ouch." We of course praised him up and down and then went for lunch at the McDonald's play place. I'm not normally a fan of feeding the kids fast food, but in this case one small McChicken and a few french fries made a terrible ordeal no big deal.