Wednesday, April 28, 2010

School System Fail and the Scary Voodoo Doctor

Overall, I really do think Tristan is doing better. His behavior is still swinging from one extreme to the other, but he's calm and stable more often than he has been in a long time.

If he doesn't take his medication right on time, we're in for a bad time. He gets really revved up right before medication time and I've given him the medication up to half an hour early just to keep things calm.

Our insurance company's patient advocate called a few days ago and I complained to her about the school system. Tristan has a letter on file explaining what needs to be done should he have a meltdown and remove his clothing. He has had tactile hallucinations involving seeing bugs crawling over his body and removes his clothing when that happens. Anyhoo, the patient advocate told me that he should NOT have a letter, he should have a 504 and services should be provided because of his illness.

Honestly, I've been fighting with the school system for a while. They insist that his mental illness does not affect him in school. That's obviously not the case if he's removing his clothing in a classroom setting. I'm so tired of fighting the system I don't think I'm going to pursue it further. We also have less than a month left of school and we're moving before the new school year.

We've been watching The Princess and the Frog pretty much daily the last four days. I bought it for S. as a treat and she loves it. Tristan is scared by the character of Dr. Facilier, the Voodoo Man. Honestly, I don't really blame him- that dude is scary! He also didn't understand where Ray went when he was squished by Dr. Facilier. I tried to explain that Ray went up to the stars to be with Evangeline, but he didn't get it. I don't think Disney did any body any favors when they had that character squished.

Appointment with Dr. M tomorrow. I hope we're done tweaking Tristan's meds, but of course I'll update with any changes.

Saturday, April 24, 2010

Pickle Policeman and Rollercoaster Behavior

Tristan and I had a play therapy session together yesterday. We discussed touching and then made masks. He made a bad guy mask with many eyes while I made a green, freckled mask with policeman sunglasses. C. asked me what my mask was, so told her it was a "pickle policeman." We played out that the pickle policeman arrested the many eyed bad guy and locked him up in a lock box. It was pretty fun.

We've been having some extreme behavior. Over all, he's doing pretty well.

Yesterday, he threw a tantrum because he didn't want to sit in time out for kicking his friend. After the tantrum, I let him out of his room and put him back in time out. He seemed shocked I wanted him to sit in time out after throwing such a tantrum. I don't know why he would be shocked or confused about that- it isn't anything new.

Anyway- extreme behavior...He's been going from doing great and having no issues to suddenly exploding and having a major tantrum. I think I like it better this way than the tantrums broken up by constant movement and defiance.

He's also been saying things like "I have to beat up _____," when he gets upset with someone. He hasn't actually done it, so I am thankful for that. Maybe he's just expressing how he feels so he doesn't hit anyone. If that's the case, I'm proud of him for being able to express that.

Now he's playing Logo, a computer game designed to teach children how to program, with his dad and sister. He doesn't usually have the patience to play a game like that. I really do think we're on the up.

Thursday, April 22, 2010

Tristan and the Case of the Missing Hearing Aid

I'm feeling optimistic. Tristan had a great day!

He came home, had snack and did his homework with little trouble. He was able to play outside for a little while before baseball practice. He got in trouble for throwing rocks (which he knows is strictly forbidden,) and sat in time out like he was supposed to- no tantrums!

Still no sign of his hearing aid. Last Thursday, he did not pick up his hearing aid when I asked him to, and his baby sister picked up the hearing aid off the floor and sucked on it. The battery compartment opened and she swallowed the battery. Needless to say, we had an hasty run to the emergency room where a quick x-ray revealed the battery floating in her tummy. We were all terrified and I think it really impacted Tristan more than I initially thought.

His teacher called me yesterday and told me that he'd been talking about it at school. We talked for a minute and it occurred to me that maybe he had hidden the hearing aid. I've scoured his room to no avail. I asked him about it and he admitted that maybe he had hidden it, but couldn't recall where he put it.

I've been telling him that we're not angry at him and it wasn't his fault that the baby ate the battery, but that it's important not to leave his hearing aid lying around. It's hard to say exactly what's going on in his head, but I'm hoping he doesn't feel guilty.

I'm just hoping that hearing aid shows up soon, otherwise we're going to have to shell out a couple thousand dollars for a new one.

Tuesday, April 20, 2010

The Very Touching Book and The Token System

The play therapist gave me The Very Touching Book to read to Tristan. It's a book about the three kinds of touching; good, bad and secret. She felt it would help him understand the right way to touch his sisters and I.

Tristan tends to be aggressive with his touching. He has an almost constant need to rub and touch people and it can border on the inappropriate. His psychiatrist feels it's a symptom of his bipolar and that seems to fit.

Anyways, reading that book this evening made me feel like a twelve year old boy. I really tried, but I couldn't help but laugh. The drawings are anatomically correct and seem a bit graphic. The preface at the beginning of the book explained that it's important to empower children with information about their own bodies, which I completely agree with. It's just difficult to encourage the kids to say "penis" over and over again until there were no more "purple faces." Of course, the only purple face was mine.

C., his play therapist, wants us to start him on the token reward system again. Basically, for every set period of time he stays on task and follows the rules, he gets a token (or sticker, etc.) He can use those tokens to "purchase" video game time, trampoline time, story time, or special snacks or time with one parent, etc. It really works well for Tristan, and I do think that most kids do well with such tangible, positive reinforcement. We have a stash of poker chips that we use for this purpose. Tristan likes to hold his tokens in his pocket and to count them. We're going to start the system again as soon as we have a down day.

Tristan lost his hearing aid. He's severely hearing impaired on the left side and he really needs that hearing aid to get the most out of his classes. I'm really hoping it turns up soon, because those bad boys are expensive!

Thursday, April 15, 2010

One Hell of a Day

I'm hesitant to write this post because I'm still optimistic that today will be better.

Tristan had one HELL of a day yesterday. He seemed okay on the way home. Once we got home, I ran the baby up to her bed for a nap, then ran back outside to unload groceries while Tristan and his sister hung out in the living room. While outside, I heard S let out a blood curdling scream and I ran back inside. Tristan had bitten the crap out of her!

When asked, neither one was sure why he had bitten her. He couldn't explain and apparently, there was no disagreement prior to the biting.

When I attempted to put him in time out, it was the beginning of a two hour battle. He screamed, thrashed and broke things. He back flipped off the couch. It was terrible. He would calm down just to find something new (and ridiculous) to rage about. When he finally calmed down, he sat in time-out for biting S.

His play therapist called (I swear, that woman has ESP or something,) and told me that she thought he might be attempting to manipulate his way out of time out and homework and that I was handling the situation well. That's always good to hear because I worry that I could be handling things better.

The rest of the day was pretty intense with defiance, and resistance to just about everything, but he didn't have any more tantrums...until 3 a.m.

He woke up S by climbing into her bed at 3 a.m. She came and got us because he is not allowed to sleep in her room due to his past behaviors towards her. He did not want to go back to his room and had another tantrum for another hour. He screamed and started pounding on the floor. C ran into the room to stop the pounding since we have neighbors that share a wall and we didn't want to wake them or their children.

He finally went back to sleep at 5 a.m., only to wake up half an hour later. I'm pretty sure he'll come home from school in a foul temper, grouchy from lack of sleep and already angry.

I can only home he comes home in a good mood. If not, he'll certainly be taking a nap after he gets home. We'll see his play therapist tomorrow and see if she has any new ideas.

Tuesday, April 13, 2010

Game in Kaneohe and Med Change

New medication change. Good grief- let's hope this works! I'm pretty sick of tinkering with Tristan's meds.

So, to recap, Tristan is currently on:
100 mg Seroquel at 7 a.m.
50 extended release Seroquel at 12 noon.
100 mg Seroquel at 3 pm
200 mg Seroquel at 6
150 mg Depakote at 6

That is a ton of medication!

Anyways, towards the end of the day, Tristan had been having a tough time winding down. It was somersaults all over the living room again. The doctor theorized that it was at the end of the 18 hour window for the Depakote, and prescribed a little dose of Depakote to get him through the rest of the day. It seems to be helping and the somersaults and frenzied, frantic movements have stopped.

At this point, if this doesn't work, I want to try something new instead of adding anything new into his current regime. It seems like an enormous amount of medication and he's only seven years old.

Tristan had a pretty good weekend. He had a baseball game in Kaneohe and I think the whole family enjoyed sitting out on the grass with the gentle sea breeze. He got hit by the ball at one point, but walked it off. He was so happy to be playing baseball and kept looking over to see if I was watching him.

We had baseball pictures taken on Monday and batting practice afterwards. He kept asking me if I was proud of the way he played. I told him over and over again that I was proud of him no matter what, whether he played baseball or not. Sometimes we all need to hear that we're loved no matter what, and he is no exception. He really is an awesome kid.

Thursday, April 8, 2010

Bipolar or ADHD?

Today, I dropped by Tristan's school to talk to the nurse about his new medication routine. To my surprise, the nurse had a son, now 19, who had been misdiagnosed as ADHD and struggled for most of his late childhood and adolescence before being diagnosed as bipolar. She said the difference after mood stabilizers was "night and day."

Her struggle and heartbreak sounded eerily similar to mine.

In the past few years, there has been a backlash against ADHD/ADD as a diagnosis in children. I've had doctors tell me that they're finding that more children are being (possibly) misdiagnosed as bipolar because the symptoms are so similar to those of ADHD/ADD. Bipolar is now the "in" diagnosis to get.

I don't think this is occurring because of a trend; I think doctors are getting better at diagnosing bipolar disorder. It was once thought that bipolar was an "adult" disease.

Here's a list of bipolar symptoms in children:
*silliness, goofiness, giddiness
*fidgetiness/ restlessness
*rages/explosive temper tantrums
*racing thoughts
*aggressive behavior
*oppositional behavior
*isolation from peers
*learning disabilities
*compulsive behaviors
*excessive daydreaming
*lack of organization
*destruction of property
*rapid or pressured speech

Symptoms of ADD/ADHD:
*talks excessively
*rages/explosive temper tantrums (typically borne out of frustration or overstimulation)
*lack of organization
*aggressive behavior
*rapid, sometimes inappropriate speech
*isolation from peers

It's easy to see why bipolar disorder can be confused with ADD/ADHD. The main difference, to me, is that the ADD/ADHD symptoms are constant, whereas the bipolar waxes and wanes.

The treatment for ADD/ADHD (stimulants) can often exacerbate bipolar symptoms. Of course, many doctors and parents may come to the conclusion that the medication isn't working and will run the gamut of stimulant medications. It is working, of course, just not the way it was expected to. Bipolar medication in ADD/ADHD patients typically are sedating, which may appear to help the ADD/ADHD symptoms.

Bipolar disorder and ADD/ADHD can coexist. If they do coexist, it's important to treat the bipolar symptoms first so as not to have the symptoms become out of control.

I think that it will become more and more common for children to have diagnoses of bipolar disorder as more is learned about this illness. Whether that's a good thing or not, I couldn't say. I don't think it's right to diagnose children with bipolar just to put a name on a symptom.

There's been such a backlash against Ritalin and ADHD and I have encountered many children that have struggled with school and hyperactivity. When asking their parents about it, many times I've been told "He's just a little active, that's all. I'm not throwing medication at a kid that's just a little more active." While I completely agree with that ideal, if a child is genuinely struggling in school and can be helped by medication, why not help that child to their full potential?

My main issue with this is that I wonder; can't we find a medium ground? There must be a way to distinguish true bipolar diagnoses from true ADHD diagnoses. Doctors need to be trained to distinguish the difference to the best benefit of the child. I think that getting better at diagnosing correctly can help make a child's life richer and enable them to have more common experiences among children, to live a more "normal" life, if you will.

I think of the past few years with Tristan and how he's been volleyballed between diagnoses. All that time wasted while doctors had verbal fisticuffs over what to call his symptoms. We certainly could have filled that time with better things and I know there are other parents and children out there having the same fight.

Edit: Tristan took the new dose of medication at school and had no problems doing his homework today. Hurray!

Wednesday, April 7, 2010

Baseball and Medication

C took Tristan to see Dr. M yesterday. He came home with a new prescription. Apparently, taking the medication (Seroquel) in the morning and at 3 p.m. is leaving a huge gap, allowing symptoms to break-through.

Tristan will be taking an extended release version of Seroquel while at school, so he doesn't come home amped up. We'll be starting the new dosage tomorrow and of course I will update here if there is a discernable difference. I'm really hoping it works because even C was frazzled by Tristan's homework tantrum today, and he didn't even have to handle it alone, as I usually do.

We managed to make it to Tristan's baseball practice today. He is so good! I never get over how he can hit the ball so well, even when it's pitched by machine. As we were walking back to the car he said, "Mama, did you see me hit the ball?! I hit the ball a lot of times! Did you see, Mama?" He was so excited and skipped along next to me, holding my hand.

The baseball game on Saturday is out in Kaneohe. I am not looking forward to driving out there, but wouldn't miss a single game when he enjoys it so much. This is his fourth season of baseball and as long as he keeps enjoying it, we'll keep going.

Tuesday, April 6, 2010

Afraid of Homework

Oh, what a day!

Tristan came home from school in rare form. His communication notebook had nothing written in it, so he must have had an okay day at school.

I let him get a snack as soon as we got home, like every other day. After snack, he refused to do his homework, telling me, "I'm scared." When asked what he was scared of, he stated, "My homework scares me."

This is a new excuse. I tried helping him, but he started to scream and cry. He threw himself on the floor and thrashed around. I gave him the option to calm down and do his homework, or go to his room to calm down. He just continued to scream, so I picked him up (not an easy task,) and took him to his room.

Once in his room, he kicked the door and jumped up and down on the floor for about thirty minutes. After he calmed down, he knocked on his door, which is the way he tells me he's calm.

Even after he was calm, he was still incredibly defiant. Everything I asked him to do, he said, "No," to, regardless of what it was. I gave him his medication on time and could tell when it started to work, because he happily sat down and did his homework without so much as a peep. He has an appointment with Dr. M tomorrow and I'm going to see if we can't adjust the time he gets his medication, or maybe see if there's an extended release version.

I've been alone for the past three days, since C had to work over the weekend. He had another work thing to do today, so I was alone with the kids for two hours today. I think I just needed a break, because my patience had just worn out and I didn't handle Tristan as well as I could have. I almost wished that I smoked so I could take a five minute breather away from the kids, just to unwind for a minute.

After C came home, I went to our room for a few minutes and read something frivolous and light.

I made our Easter dinner today since C wasn't home for Easter. I made a ham and Tristan started dancing around the kitchen asking if I was making bacon. Tristan loves bacon (but then again, who doesn't love bacon?) He didn't seem to understand what I was making, even though he's had ham on other occasions. At dinner, he ate a ton of ham.

After bathtime (and medication,) he pulled his sister on top of him about three times before I finally sent him to bed. I'm not sure why he does this, but it's against the rules as she doesn't like it and I find it inappropriate. His doctor feels that it's because he's hypersexual as a symptom of his illness. I see why he would think that, but I think it could possibly be some kind of impulsive/compulsive need to touch.

I'm just glad today is over and I'm ready to start a new day.

Sunday, April 4, 2010


Easter Morning. The kids were really excited that I let them eat chocolate for breakfast. They both went for the giant hollow chocolate bunny. C. gave the baby a lollipop which subsequently attracted every piece of carpet fuzz and dirt in a 50 foot radius. She still cried when I tried to take it from her.

We've had a difficult morning with Tristan rolling somersaults across the living room again. I gave him five chances to stop rolling across the floor before I finally grounded him...on Easter. I realize it may seem a little ridiculous to be up in arms about a somersault, but he has kicked both his sisters and myself in the face while somersaulting. It doesn't feel good and he actually made the baby bleed.

He continued to roll around on the floor, so I gave him the choice to walk to his room for a time-out or to be carried/dragged by me to his room. He immediately began protesting, which turned to blood curdling screams as I picked him up to take him to his room. I locked the door behind me (we have the lock on the outside for these reasons.)

He began to jump up and down, making as much noise as possible, while screaming and pounding on the walls and door.

When we went to see Dr. M last week, he suggested we give Tristan his medication in a different schedule; 100 mg Seroquel at 7 a.m., 100 mg Seroquel at 3 p.m., then 200 mg at 6 p.m. along with his Depakote. He wanted to try that to see if he'd do better if he was covered by the Seroquel all day. I'm not sure it's working because he sure has had a tough time lately with listening to and following directions and being still. His movements have been frantic and frenzied.

Yesterday, we had the first baseball game of the season. Tristan did very well, hitting on the second pitch. He's the youngest kid on his team, having turned seven after the season started. All the other kids are seven and eight years old. He's not the smallest kid on the team, though. He's always been on the bigger side, being taller than average. He seems to have a knack for baseball, which he didn't get from me.