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.