Tuesday, April 27, 2010

What We Really Want From You....


Our supporters, friends and family (in my opinion).

1. Listen without judgment. That's right, shut your trap and just listen.

2. Offer educated advice. Key word is educated. Yes, that means you have to dust off that book we may have given you. Or check out some links online. If you don't know what to say, go back to number one. It's okay just to listen.

3. Get to the know the child. All children need role models and special people in their lives. Bipolar kids especially do since they usually feel like no one likes them. They may lose friends at school and frustrate teachers.

4. Offer help. If you really care, get off your butt and help. That doesn't mean you have to babysit a mentally ill child (although that would be nice too). But parents have to grocery shop, which can be very difficult if not impossible with a special needs child. Some of us also have other children who may need a break, or who get tired of being dragged to all the doctor and therapy appointments. There's also laundry to be folded and meals to be cooked. Believe me, anything helps. Oh, and we won't ask out right because we don't want you to feel obligated or inconvenienced. We also feel guilty and ashamed about needing help.

5. Treat us like your other friends/family, but also realize our lives are different. And don't get frustrated if we're not always at our best. Because we are under a constant barrage of stress. So cut us some slack if we snap once and a while.


***Edit to add: Tell me I’m doing a great job and that I’m a good mother. I need to hear this often for encouragement by Mama Bear.

***Edit to add: Ask us how our kids are doing, just the same as you would a child with cancer by Jennifer.

***Edit to add: One thing I wish people would work on is learning the difference between pity and sympathy. Nobody wants to be pitied! But most of all? Number one, just like you said: Listen. You can't "fix" it for us and we don't expect you to. Just be there to listen and care. Oh, also? Anyone, anytime, is welcome to clean my bathrooms. By Adrienne.



Did I miss anything? Post a comment on what you'd like others to know and I'll edit the post to add it.

Thursday, April 22, 2010

Opening a Can of Worms

Well, it seems as if I got myself tangled in an online anti-psychiatry "discussion". Now I know never ever to do that again. The reason I commented in the first place was because I'm so tired of parents being displayed as "manipulated by TV commercials", pawns the doctors use to get paid by pharmaceutical companies, or "duped" into believing anything anyone says about their child. As if we don't have a brain in our heads! As if we don't know every inch of our children inside and out!

It would have helped their cause if they had been raising a child with mental illness. Or at least empathetic to those who are (or if since they don't believe in childhood MI, at least that our children are difficult and exhausting). The blog in which the debate started was at Raising Bipolar. I respect Meg because she balances caution with realism. Yes, none of us wants our child to be on medication. Or to even present symptoms that need medication. But what these anti-psychiatry pushers don't understand, because they aren't living it, is how heart-breaking it is to see your child living a nightmare. And maybe, if they don't have kids at all, they don't understand how we would do anything to protect our children because it is our natural instinct to do so.

I asked what the alternative to medication is. When you have a child displaying concerning symptoms, when they are struggling day to day just to function, if we don't use medication to help them stabilize, what should we do?

Mostly I received lots of vague and generalized suggestions.

One of which was therapy. Yes, therapy absolutely has it's place in the mental health world. And Taz does go to play therapy 1/2 hour a week... and plays with puppets. He's four! How much therapy can a four year old take?

Dh and I have been taught how to use therapeutic techniques in working with him. But as one of the anti-medication commenters pointed out, it takes a lot of time. Time that Taz does not have. He is only four once. He only has one childhood to live. If I felt that medication was taking that childhood away from him, causing "cognitive dulling" as one put it, you can bet your a$ I would take him off immediately. But, unfortunately for the anti-whatever crowd, it is helping him.

I don't think of medication as a quick fix. I think Taz will need it for the long term. But if, as a teenager or older, he would like to try using therapy to deal with his symptoms without medication, I will be more than supportive. But as he gets older, he will (hopefully) gain the ability to use introspection to guide his decisions. At four, I mean come on, his life revolves around cars and worms!

And I'm curious as to how the anti-medication crowd would use therapy to help a child have consistent sleep patterns? Last I knew REM sleep has to do with brain chemistry. It has a biological base. Is that okay to treat with medication since sleep deprivation is so detrimental to physical health? Or should we let our young children live on insignificant amounts of a very important part of our health and well-being? After all, during certain REM cycles is when growth hormones are released. Potentially, our children could be stunted physically by not intervening with sleep disorders. Is there a place for medication in that scenario? If so, why not for other brain chemistry issues? Ah well. I guess I'll never know.

Anyway, I didn't get much out of the debate, except maybe a harder look at Taz and his options. And maybe even greater confirmation that we are doing the right thing. Because when it comes down to it, I have to do something. I can't wait around for him to be old enough for the correct therapy while he loses his childhood to rage and depression.

Someone also mentioned RAD (Reactive Attachment Disorder), which is treated with intensive therapy and can overlap with bipolar symptoms. It can also be common for children who've been adopted out of not-so-great environments. We looked good and hard at this disorder to see if Taz fits. And he just doesn't. The key ingredients for a RAD kid are; pushing away significant relationships, no discernment between strangers and family, lacking empathy, inability to give or receive love, controlling, lying and manipulative behaviors (Taz has no ability to do either), not being genuine or real in emotional engagement, and passive aggression. Taz lacks all of these traits. Really the only thing he has in common with a RAD kid is that he is defiant, moody, and violent, which is also part of bipolar. Taz has a very appropriate relationship with us, as his parents. He comes to us for comfort, he is wary of strangers, and he has the ability to show true love and affection with us. Sure, he's a little over-dependent, that could be a result of anxiety or bipolar or his early childhood. But it's nowhere near the same as full-blown RAD.

Maybe if the shoe was on the other foot, if these naysayers had a child with "issues", they would choose to allow that child to suffer while attempting every other resources except the one thing that could help, medication. But for me, I'm choosing life. And I don't mean that he would die without medication (although some do), I mean that his quality of life might be decreased. Maybe if I wasn't willing to take the risk and try medication Taz would go on to live a long life with no health complications. Maybe. But what's the point of life without happiness?

Wednesday, April 21, 2010

Looks of Sympathy? Well That's a Change!

We are seriously having some trouble in public lately! I don't know what's going on but I'm scared to take Taz out now. Maybe I should take a break from it for a while and stay home. But I go stir-crazy probably more than the kids do.

Anyway, got two more stories for ya. Yes, two!

All of us went to Home Depot this weekend to pick out some paint for the new house we're renovating. Taz is obsessed with Dh. Obsessed. I think it's normal for his age. He's a daddy's boy and with Dh always working on the house so we can move Taz doesn't see him as much as usual. So naturally he relishes the time he can get with him.

Taz was pretty good through most of the trip until the very end. He kept wanting to push the cart. The problem is he is not a very good driver and kept crashing it into shelves. So I told him he couldn't do it anymore. But he is very defiant. He kept trying until I placed him in the cart, which he barely fits anymore. Dh had him in a couple aisles down from where I was looking at paint with Chica and I could hear him screaming. Very. Loudly.

I actually thought about yelling "Hey! Control your kid!" out loud in Dh's direction. But I thought he might kill me for that ;)

Instead I pushed him out to the car to wait until Dh was done. On our way out I got an "Oh My God!" mouthed in my direction. Which was odd to me because Taz was just screaming. He's done way worse than that.


My next story happened just yesterday. Stick with me cause the best part is at the end. I took the kids to our local mall to kill some time because it was cold outside. In our mall there is a kid's play land with slides, tunnels, and space to run around. Chica is at an age where she loves this place. Everything is her size and nice and soft so she can't really get hurt. Taz likes it too, but it's overstimulating for him to be there for too long. But I wanted to give Chica a chance to play. Remember, one of my motto's is "we do have another kid". I don't want to leave Chica out in left field.

Well Taz was off. Way off. This was Dh's fault. He was in charge of the kids Saturday morning cause I went to work early. He didn't give Taz his meds. He forgot. I think that's why Taz was so off.

He was all over the place. Extremely paranoid of the other children. He was screaming at them to stop looking at him. He was completely out of control. Again, I stayed calm. I pulled him aside a couple times to calm him down and talk him through the feelings. Finally, Taz jumped up on the my lap and pulled desperately at my neck, and it was clear he was out of sorts and just didn't know what to do with himself. He said I want to go. What he really meant was I NEED to go!

So we left. But even putting our shoes on was a difficult task. Taz couldn't slow down enough to sit still so I could put them on him. Taz can not put his shoes on himself. He can't get himself dressed either. He doesn't have much independence at all, even for a four year old.

As I looked around at the parents in the play area, I thought for sure I would be met with some nasty looks and head shaking. But there wasn't any. All I saw was sympathy. When I looked around I realized they felt bad for me!

Good, in a way. But have we really gotten that bad? So bad that it's painfully obvious that there is something going on with my son? Something that isn't over-indulgent lazy parenting!

I don't actually know what anyone there was thinking. Maybe they felt bad for him that I was such an awful parent! Either way. It shocked me. And I'm not sure if it's in a good way or a bad way.



It's times like these I'm glad I'm not a celebrity (although one could argue the basis of
why Octo-mom is a celebrity in the first place?)

Monday, April 19, 2010

Alphabet Soup

There is a term in the special needs world (or is it just for mental illness?) called "co-morbidity". It basically means conditions that occur together. As in; bipolar with comorbid ADHD. But the word, to me, means - the other thing he's going to die from. I mean, co-morbid? Does anyone else think it's weird?

Anyway, back to the topic. Bipolar can occur with other complications, is my point. Things like attention disorders, anxiety disorders, conduct disorder, learning disabilities, and even autism. Parents sometimes refer to this as the "alphabet soup" effect. This can happen before you even know it. You start going to professionals to get help with bipolar disorder and suddenly your child is diagnosed with BP, OCD, ODD, ADHD, SID, NLD, and ASD. See where the alphabet soup term comes from?

My personal feeling about it is to leave kids with as few labels as possible. Many many of these conditions have overlapping symptoms. There is no doubt in my mind that Taz has very clear signs of bipolar disorder. That is his primary diagnosis, even though he would fall into the category of some others. The only other condition I acknowledge separately (for Taz specifically. I absolutely acknowledge autism as a whole other diagnosis) is SID, or Sensory Integration Disorder. Also known as Sensory Processing Disorder, a term I like better. Taz, literally, has trouble processing sensory stimulus. Although it often occurs with Bipolar and many other things, for us, it's an entirely different diagnosis from the bipolar.

I wanted to give SID it's own post because it effects our everyday life, just like bipolar does. The ways this presents for Taz are:

- Sensory craving; this is a boy who swims in sand. You think I'm joking but he literally does the breast stroke on his belly in the sand. He rolls in it, dumps it on his head, and covers himself in it. Anything can be a sensory experience for Taz. He loves squeezy balls, gak, gummy worms, spiky balls, rice and beans in a bucket, and all that good tactile stuff.

- Ironically, after swimming in the sand, the next day he might scream about a small wet spot on his shirt and want to change it immediately.

- Gross-motor sensory seeking; Taz loves crashing, jumping, rolling, clapping, and stomping. This is called proprioceptive input. Every morning when he wakes up, the first thing Taz does is stomp around the house clapping his hands and making strange noises. My theory is that he's giving himself the sensory input he needs because he's wound up and it helps him get the pent up energy out. It also organizes his system so he can get ready for the day.

- Ironically, Taz is also very cautious. It's pretty weird, to me, that he has no problem crashing head first on the couch pillows but then won't climb up a ladder on a playscape. He is very insecure when he's off the ground. He is extremely afraid of heights. This is called vestibular or gravitational sensitivity. It takes a long time to coax him to try new activities involving being off the ground. He goes to private OT once a week and we are working on this, but I don't think rock climbing or rappelling will ever be in his future.

- Noise sensitivity; Taz hates loud noises. He is so scared of alarms he won't even walk by our home alarm system on the wall. Sudden noises scare him and he has a tough time recovering. Ironically (there are lots of contradictions with Taz), he is the loudest person I know. Therapists think he drowns out noises he doesn't like with his own voice. That's why when Chica cries or when I vacuum, Taz will yell as loud as he can (giving everyone else a headache).

- Pushing; this is one of Taz's favorite things to do. Push things around. It's one of the main ways he gets the sensory input he needs. I find if he's really wound up, I take him outside and have him push Chica in the stroller, or his car (the kind he used to sit to ride when he was littler) up and down our bumpy road. It works. While we're renovating our new house and basically living in two houses I've taken some of Taz's toys to the new house so he would play while we work. One day we were outside our old house and despite there being a multitude of toys in the yard, including slides, climbing equipment, dump trucks, balls, etc...Taz paced around saying what me push? over and over until we went inside because it got so annoying.

- Rocking; Oh the rocking! Let's see. How can I make this clear? Taz is always rocking. This happens in several ways. Every night, since he was a baby, Taz has rocked himself to sleep. (Remember, I didn't have him until he was 14 months old, he's adopted from foster care. He started rocking long before he came to us). He lies on his back, he holds his stuffed cow on his face, and he rocks violently side to side for at least 15 minutes, usually longer, until he falls asleep. That's one way. Another way he rocks is with his head. We call this the "Stevie Wonder". He literally does exactly what Stevie Wonder does when he sings. Taz rocks his head side to side, usually when he's happy. I've seen him do it at school during circle time, in the car, in front of a fan, listening to music, pretty much whenever he is not crashing or pushing. The last way I've seen him rock is when he's agitated and anxious. This is usually when he's also depressed. He will stand near me and sway his body back and forth while whining or just being overall anxious. He will also lie down on the couch and do the rocking motion like he does when he goes to sleep anytime he's coming down from a rage or being upset. I think it calms him down. Sometimes we even tell him to go rock on the couch so that he'll calm down.

- Ironically (yes, again), he hates swings!


Taz playing in a whirlpool at our childrens science museum.


Our psychologist initially thought Taz was on the autism spectrum because of all this sensory stuff. And he does have some autistic traits. But not enough to qualify for the diagnosis.

So...does anyone else's kid(s) have sensory needs?

Friday, April 16, 2010

It's a Case of the Love Bipolar

This is what I hear on a daily basis...

Mommy, I hate you!

5 minutes later

I love you Mommy.

Me: But you just said you hated me a minute ago.

No! I love you!

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I miss Daddy. I love him. I don't like you Mommy. I like Daddy.

5 minutes later

I love you Mommy. I miss you.

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I HATE "Chica"!!!

5 minutes later when Chica is crying

Don't worry Chica, I kick Mommy for you. I shoot you Mommy!

5 minutes later

I want Chica die. I hate her.

5 minutes later he's holding her hand.



It must feel weird to slingshot back and forth so quickly.


Wednesday, April 14, 2010

A New Appreciation for Happiness


I have another blog. One that I keep separate from this one because it contains real names and pictures of my kids. I don't want the general public knowing these intimate details about my son but I needed an outlet to discuss bipolar disorder.

I've been blogging for 2 years now. A little over a year ago I wrote this post below.


It always makes me laugh when I hear people's response to a common question, "What do you wish for your children?"

The number one, most common response is, Happiness.


Well that's just crap.
Happiness is an emotion. Emotions aren't permanent. If they are, you probably need help. Permanent sadness is depression. Permanent anxiety is a disorder. Permanent perkiness is just annoying. Of all the qualities, characteristics, values, and strengths you would wish for your child, why would someone pick happiness?

For me, I would wish for my children to be honest, have self-confidence, be compassionate, independent, have strong values, stand up for themselves, and know they are loveable and know how to love others. I know that's a tall order. But hopefully, we'll do something right as parents and our children will turn out less messed up than we are.


But happiness? I don't know, maybe it's just me, but I don't wish eternal happiness on my children. What can one learn from that? Sadness, grief, despair is a natural part of life. I don't want my kids to be sheltered from the real world. Yes, life is hard. People let you down. Bad things happen. But to not experience that part of life, is to not experience life to the fullest. With the bad, you also have the good. And if anything, I want my children to live. Really live. And that means going through an array of emotions and experiences, even bad ones.


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Things have changed since then. Obviously. I was blissfully ignorant when I wrote this. I still thought my son's issues were because he was a "spirited child". And this is not the first time I've eaten my words.

Happiness sounds pretty good to me right now.

When I think of Taz's future, all I can hope for is some amount of happiness. Whether he goes to college and enters the career of his dreams or whether he flips burgers at a diner, if he can find some kind of joy in life, I will be satisfied. Even if he just has a hobby that he enjoys, that will be enough for me. Out of jail, off of drugs. That's what Dh and I hope for. You might think our standards are low. I think they are very high.

Monday, April 12, 2010

The Most Embarrassing Public Meltdown Ever

Monday is therapy day. Taz goes from play therapy with the psychologist, to OT for an hour, to Speech therapy for 1/2 hour. All in a row. I plan on changing the play therapy to another day after this month but Taz does well having Speech right after OT. Anyway, it's a long afternoon for all of us. And I was probably pushing it when I insisted we stop at the book store on our way home so I could grab a couple books I've really been wanting. I should have known better, especially with Taz being so unstable lately. But I did it anyway.

He did well playing with the train table for about 15 minutes while I grabbed the books I needed. Then we went to the check out and he very suddenly started screaming on the top of his lungs that he was hungry. He already ate all the snacks that I brought and it was almost dinner time so I said (in the most loving way possible) Oh you're hungry? Well we can eat something right when we get home!

But of course, that wasn't good enough. I don't usually mind public outbursts, especially in over-stimulating places like the grocery store and Target. There's always a little tot screaming here or there. But in a book store....well....let's just say he made a big scene. Everyone was watching us as we screamed our way from the children's section in the back of the store to the check-out in the front of the store.

As we waited in line and began to check out he continued screaming, running away and hiding (a new behavior but not going far), then yelling nasty names at Chica and screaming at her to stop watching him. But who could take their eyes off of him at that point? I stayed calm. I mostly either ignored him or made calming statements. Ironically the check-out girl had to call the manager about the pricing on one of my books which dragged the whole thing out longer.

Pretty quickly Taz escalated to trying to scratch Chica, who was just sitting quietly in her stroller. So I very calmly told him I would hold his hand so he wouldn't hurt anyone. He screamed louder but oddly did not try to scratch or hit me. I was almost finished paying when Taz suddenly screamed...

I peeeeeee!!!!!

And sure enough, I looked down, and there was a giant puddle on the floor under him. Now there was already a line formed behind me and there was only one check-out lane open. So everyone behind me had to wait while the worker got a roll of paper towels, and they all watched me clean up the pee puddle as my son screamed on the top of his lungs "I peed!!!" and continued crying and jumping around like a lunatic.

I could just feel the eyes poring into the back of my skull.

But. I did not lose my cool. I did not blush or look around sheepishly or apologize to anyone. Yes, I was embarrassed. Humiliated actually. But what good does it do to show it? It just makes me look like a floundering idiot.

Instead I stayed cool and confident. I was hoping it would make it seem like I meant for that to happen. You know....like when you trip over something but look cool doing it and it seems like you did it on purpose? Same idea.

I don't think it worked.

Anyway, if it was just about the screaming it would be no big deal. But add on top of that the name calling, the aggression, then peeing on the floor, and that puts this epic experience #1 on my list of most embarrassing public meltdowns ever.

Saturday, April 10, 2010

Mania

How do you describe mania exactly? Have you ever tried to explain it to someone who doesn't have a frame of reference? It's incredibly difficult.

For us, it goes way beyond being hyper. Yes, Taz is more hyper than most kids on a daily basis. Yes, he gets wound up easily, he gets rough, and he gets really silly and giddy. When he's like this he can pass for any ADHD child.

But true mania is different.

(Sidenote: In the bipolar world there is mania and there is hypomania. I'm not exactly sure the difference, just that one is more severe than the other. What I'm describing today is a more severe manic episode that Taz experiences every once in a while. There are times where he has the less severe form of mania; i.e. giddiness, racing thoughts, tunnel vision, grandiosity, hypersexuality, etc.)


I finally nailed down how different mania is than hyperactivity while I was talking to my mom about it today. When Taz is hyper I can at least slow him down with the right interventions and get some response from him. There can be an interaction. There is some amount of acknowledgment and reasoning behind his eyes, even if he continues to be impulsive and hyper.

When he's manic, there is nothing. There is no response. There is no reaction or interaction. There is nothing behind his eyes. He has a big eerie grin on his face but no acknowledgment about what he's doing. I could probably tell him, in all seriousness, that I'm going to drive the car into the lake and he would just smile at me. Maybe even laugh.

It's scary. The only word I can think of to describe it is psychotic.

But it's hard for other people to believe without seeing it. They try to explain it away. He's manipulating you. He's looking for attention. He's trying to make you mad. He's trying to be funny.

No. He's not "trying" to do anything. There is no thought behind it. There's nothing.

I guess you just have to see it to believe it.

(Sidenote: Taz was like this before medication but it had mainly stopped since starting medication. It does not appear to be caused by the medication he is on, although you never know. He did have a severe episode yesterday and today and the psychiatrist is aware of what is going on and ordering blood tests to check med levels next week.)

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In other news. I think we may be getting intensive in-home services sometime in the next couple months. We've tried this before through our local social services office (a foster/adoption response team is a free service for licensed families) but it didn't turn out well. The worker was undereducated and inexperienced in regards to serious mental illness. She looked at us blankly and said I don't know what to do at week 5. She was lost after her "Happiest Toddler on the Block" technique didn't work. Seriously. That's what she came armed with. We were supposed to grunt in caveman toddler language what we thought he wanted and he was supposed to calm down once he realized we understood his needs. I think I laughed out loud when she explained it.

Anyway, I'm hoping for a better experience (but I won't hold my breath). This is a program derived from the Yale Child Study Center specifically for families living with severe psychological problems, who've tried other resources, and who are at-risk for hospitalization. While I'm not planning to bring Taz to a hospital anytime soon, I have to admit that if he was much bigger and this violent, I would have no choice.


So...how do you describe mania? How do your kids display it?

Friday, April 9, 2010

Out for Blood

Taz has been relatively stable on his current med combo. Then the past couple days something inside him flipped.

He is WAY manic. But the main problem is how violent he's suddenly become.

Okay, he's always been aggressive. But normally (at least since starting meds) it has been half-hearted; meaning not much force beyond his swats and pushes. But yesterday...man! He was going for blood!

He was full force attacking Chica and me. It felt terrible for Chica. Every time he went near her she flinched. And when he hurt her she looked at me like why can't you stop him?

I tried. I tried and tried. But with two mobile children and one small house there is only so much one person can do. Aside from tethering one of them to me all day there are going to be opportunities for Taz to go after Chica. Pretty much every time he walked by her, any time she made a noise or even looked at him, he wanted to hurt her.

I think people don't really understand how hard it is to keep two kids apart. Especially when one of those kids (being a 1 yr old) doesn't understand to stay away from Taz. And Taz, who has bipolar, and doesn't want to stay away from Chica.

I tried using consequences to deter the behavior but when a bipolar child is unstable consequences don't do squat. I'm sure you know what I mean. Half of me feels sympathy for him because he probably feels really bad inside. And part of me is really angry at him for attempting to hurt a vulnerable innocent baby. I mean, that's my child he keeps attacking!

So. I'm not sure what to do as of now. I called pdoc and left a message. I emailed our psychologist to see if she had any ideas. I've heard that a lot of bipolar kids have seasonal effects, including becoming more manic in the spring. Maybe that's it?

Either way, I'm happy to have a break tomorrow. I'm working most of the day (I do per diem work some evenings and weekends) and Dh will be left to deal with it. Good luck honey!

Thursday, April 8, 2010

Normalcy!



I live on the East Coast and Hallelujah it's 85 degrees here!

A big part of keeping me sane, and keeping my family healthy, is playing outside. This past week or so we've been outside in the sunshine for hours upon hours. I love it. More importantly, my kids need it.

We live 1/2 mile from a lake and although I prefer the real beach (coastal people know what I mean), we spend a lot of time here too. Today was our first trip of the season.

In my last post I talked about normalcy and how I'd like to have just a few hours of it once in a while. Well, God must have been paying attention because today, I did!

There were several of Taz's friends there from preschool. They played in the water (which was freezing cold although they didn't seem to care), they chased each other, they splashed and laughed. It was so....well....normal. And Taz fit right in. He even chased the girls around with seaweed on a stick!

I didn't have to watch him like a hawk like I usually do. I could chat with the other moms and spend time with Chica (who, it turns out, does not like sand). It was wonderful.

We did have to leave a little early because I could sense a meltdown coming over a sand shovel. But that could be normal for any over-tired four year old.

Oh, by the way, the photo above...is not anything like what our beach looks like. It's more like the beach I picture in my dreams.

Wednesday, April 7, 2010

Tough Decisions I Shouldn't Have to Make

On a weekly basis my thoughts fluctuate between having hope for Taz's future and feeling the opposite, hopeless. Well, today I'm feeling utterly hopeless.

Taz has been on risperdal (3x day), seroquel (12mg at night for sleep, the only thing that keeps the night terrors away), and depakote (2x day). For those who don't know, risperdal and seroquel are anti-psychotics and depakote is a mood stabilizer. It's pretty typical that someone with bipolar is on anywhere between 2-5 different types of medication, usually a combination of mood stabilizers, anti-psychotics. BUT, every medication works differently for every person. Which is what makes medicating children VERY tricky. Like I've said before, it's a guessing game.

For us, the difficulty is exacerbated by Taz's age. Our pdoc (or psychiatrist) is very experienced in working with young children and strikes a good balance between being aggressive to treat the illness but conservative in dealing with medication and Taz's age.

We had an appointment on Monday morning to check in about the med combo he's on now.

Since Taz has started the depakote, more than a month ago, he has been eating NON-STOP. And I don't mean snacking here and there on high carb foods. I mean shoving food into his mouth like he's been starved his whole life, then asking for more before he's done chewing. He's been eating two, sometimes even three, of each meal. So, 3 breakfasts, 3 lunches, and 3 dinners. Plus snacks in between. And the problem is getting progressively worse.

Even though Taz is very active and skinny, and as of right now he's not gaining tons of weight, I'm still concerned about this side effect.

Pdoc didn't think it was any big deal unless he is gaining huge amounts of weight. But why would I want to wait that long? Maybe it's just not a big deal in the grand scheme of things? Maybe he's seen worse side-effects and I'm just being a wuss? I don't know. I'm new at this.

Anyway, I've been depressed, discouraged, and feeling hopeless all day because we are down to three options and one very big realization.

The options:

1) Keep everything the same and deal with the eating problem in other ways

2) Taper down the risperdal to see if it helps

3) Take him off the depakote and don't replace it


And the big realization is...(dum dum dum)....this is as good as it's gonna get, at least for a couple years (when he's old enough to try another mood stabilizer).

Yikes.

I think I'm still naive about all of this. I mean, I've never raised a mentally ill child before. How am I supposed to know what to expect? I put all my hope in that medication would make him "normal". Now don't give me any BS about there being no such thing as normal. You know what I mean!

Even when Taz is stable, or having a good day, there is still "stuff" there. Anxiety, fear, short attention span, social delays, the list goes on. I would love, not for my sake but for his, if we could get just a few hours a day of normalcy.

So I put all my hope in medication. And it's working, to the minimal effect. But when we are late with the risperdal, Taz falls apart. If we skip a depakote dose, Taz falls apart. So, what choice do we have? We have to keep him on all three. It's what's holding him together (although he's still very fragile) enough to get through the day.


I guess I can figure the medication is the glue that's holding all the bipolar pieces of him together. He still might wobble here and there. He's fragile enough that even a little bit of shaking will knock him over. But when the ground is secure, it's the glue that helps him stand strong.

And I think it sucks that we have to choose between side effects of the drugs and side effects of not being drugged. That's the tough decision no one should have to make.

So we chose side effects of drugs. We made a small basket of low calorie snacks (rice cakes, raisins, etc) that Taz can have access to anytime. But those are the only things he's allowed to eat between meals. I'm hoping it's worth it.

What did you choose for your kids?

Friday, April 2, 2010

Crap! I Must Have Jinxed It

Yeah...so you know when I was talking yesterday about how we've been doing good....yeah, about that....

It seems as if I jinxed it. I hate when that happens!

Today (and it's only 10:15am mind you) has been a complete disaster. Everything should be good. Taz slept fine, ate enough, lots of exercise. I even tried to make a semi-structured schedule for him. Albeit very lame with my own pencil drawings of activities. I plan on printing nicer pictures this weekend to use as a schedule. Especially since I'm homeschooling after this month (more on that later).

But, none of that made any difference. Taz was manic at first. I thought that would stop once he had his morning medicine. It did stop, but turned into extreme irritability. I don't know which I prefer. Both are really annoying to deal with.

So, this could mean it's a bad day, all day. Or he could perk up after his afternoon risperdal. It could go either way.

It's nice out so I planned lots of outdoor activities, plus some down time. With most bipolar kids it helps to keep busy. He whined all morning to color easter eggs. So we did. Then he whined all during easter eggs to have a snack. I told him after we finished he could eat an egg. Then we went outside, where we usually have a great time.

Well, his powerwheels wouldn't work the way he wanted. Meltdown. We wanted to go on a wagon ride with Chica so we started to, but every time she moved from her seat, he would hit her. So I took him out. Meltdown. We came inside for a snack (yes, another. His depakote makes him eat like crazy). Taz had a meltdown over where to eat his cracker. Ridiculous!

It's just one of those days where nothing goes right for him. It's sad, really.

But I'm hoping he feels better this afternoon.

Like I said. We go day by day.

Anyway....if I don't post tomorrow. Happy Easter everyone!



Thursday, April 1, 2010

A Good Day

I've got lots more background stories and bipolar information to put out there, but today I wanted to talk a little about how we're doing now. Because it's pretty good news.

Taz is doing well, at this moment. As in today. Well, sometimes we go day by day here. Actually, he was doing good for the last couple weeks, then this weekend fell apart. I was worried his med doses weren't high enough. Or suddenly stopped working (because that happens a lot).

But then he had a good week. And an especially good day.

I can tell when he's stable because he's much more directable. He apologizes if he hurts someone, does something wrong, or gets too rough. He is able to handle a consequence without raging or laughing, one of the two reactions that mean he's unstable.

He's even more verbal when he's stable.

I'm also playing around with a schedule that works for him. Taz has sensory needs as well. So I'm trying to juggle giving him what he needs, parenting Chica (who is a whole different kid), and taking care of myself. I haven't quite figured out how to balance it yet.

But today we did good. It helps that the weather is better. Spending a long time outside is good for everyone.

I think the lack of structure on the weekends is really screwing us up. I don't really think of Taz as a super structured kid, but maybe we need just a little more.

There's always something to work on. Always something to improve.

So we keep trudging along, trying to find our way to balance and harmony. I have high hopes for the spring and summer. I hope I'm not disappointed.