Wednesday, June 30, 2010

Feeling Disappointed & Just Plain Mad

We just went through a rough spell, if you happen to read my last post you might recall the incident that required a security guard’s assistance. I wish that was the worst of it. The following day my son had 6 separate incidences that lead to chaos and depression.

My son was spinning out of control, he appeared to have too much energy and was very impulsive, taking pleasure out of creating conflict. It looked like he could’ve been experiencing mania.

Then after a major rage and destruction of some of his favorite things in his room, he went into what clearly looked like depression. He was crying saying he felt worthless and shouldn’t exist.

Then the storm passed and he returned to his normal self, eating a snack before bed, like it was any other night.

As a result of this setback, we put him back on his full dose of Tenex. It became obvious that the Tenex was a part of his recent stability. And the next day, he came to me and said, “I feel different inside, I had a moment where I would’ve hit my brother, but I didn’t. I feel a lot better today.”

I’m happy to share that the day finished out pretty good. However, we met with our therapist today and to be honest, I feel disappointed. After all the details and charts I shared, I wish the therapist can be more specific with what’s going on with my son. I desperately need an explanation for what we just went through. I know for some parents, having a diagnosis isn’t needed, but for me it is. Instead, I watched my therapist shake his head saying “oh no...”, “oh that’s too bad...”, “wow!” as he silently read my notes of all the rages we just experienced.

He then lifted his head and said “I admire you for being so courageous and for never giving up and continuing to try.” It was a nice compliment, I guess... this is my son we’re talking about, I’ll go to the ends of the earth to make him better. I think most parents would.

So at the end of the appointment, I felt like I gave him lots of info, but I left with a handshake and his words, “I’m so sorry, hang in there.” Oh this makes me so mad! I need so much more, but I don’t know where to get it. Is my son’s case out of his scope of training? Why is he so surprised about what he sees each month in my charts, but online I read story after story of these same scenarios of other parents going through the exact stuff. I guess for me, his case isn’t that surprising, so why does my therapist act like it is?

I guess there’s this part of me that feels like when I finally bring in enough “evidence” of his illness they’ll be able to give me a complete diagnosis and treatment plan. But that’s not how mental health works. It’s years of watching and treating symptoms and I don’t want to play that way.

Maybe I’m just expecting too much. At the end of the appointment, I was advised to find a horse riding camp, ignore the voices he’s been hearing, help find him a best friend, remove dangerous items from his room, more Daddy one-on-one time and have him do sleepovers at grandparents to give him some stress relief from his brothers. Is this the best we can do? Does therapy really help or is it all about the meds?

I ask this because when my son is stable with his medication, therapy works. But when he’s unstable, we just have to wait for the storm to pass.

What scares me is that my son really seemed sick these last few days and not knowing what’s causing it makes me feel like we may be missing something. How can you treat cancer unless you know which one you’re treating? For me, this is the same thing for mental illness, how can I be sure he’s getting the best treatment when we don’t know which mood disorder we’re dealing with?

This is really tough for me and I’m just plain mad.

Sunday, June 27, 2010

Security Please!!!

Today was a really bad day, but some good came out of it.

After a week of things getting worse, our son became very impulsive today. At one point, after running out of his timeout laughing at me, he collapsed on the floor and began crying, saying that he was feeling sad and didn’t know why. He went from smiles to tears in less than 2 minutes.

Then as the afternoon went on, he continued to feel impulsive. He was picking on his brothers when he called me desperately to say that he didn’t know what was wrong, but he felt too much energy inside and felt like he wanted to hurt someone. So Dad took him for a walk around the neighborhood to release some of that energy.

After dinner, I took the boys for a swim at our community pool, hoping to help settle him down. But he was still struggling with his impulses and was overly sensitive. When it was time to leave, I told him he couldn’t go to the spa because of his behavior and then his trigger switched.

He tried throwing my stuff, but when I wouldn’t let him, he picked up a rock the size of my shoe and threatened to throw it at my head. I yelled at him to put the rock down, but he stared at me with a smile on his face and shook his head “no” while gripping the rock in his hand, over his head. After a moment of staring me in the eye, he threw the rock just over my head (it was obvious that he didn’t want to actually hit me, yet it still scared me).

At that point, I knew that things were just going to escalate, so I grabbed one of his arms to keep him from running off, but he used the other hand to hit my 5 year old’s face. At that moment, my 5 year old is crying, my 7 year old is yelling that he’s scared of his brother as he hides behind a tree and I’m sure everyone at the pool was watching us.

I grabbed both of his arms to restrain him as we began to walk, I could feel that he was up for a fight and I knew that things were going to escalate once we got to the car. Trying to keep things under control, I yelled to the security guard “My son has an illness and I need help getting him to our car safely.” Thankfully he stepped in and another mom, who was just a bystander, took my younger kids under her wing as I took my restrained son to the car.

What was unnerving to see was that my son didn’t change in the presence of these strangers. I was hoping that he would pull himself together, but instead he remained disobedient with a smile on his face, even hiding in the trunk of my van. I could tell that he wouldn’t be safe to drive home with the other kids in the car, so I had to call my husband to drive him home in a separate car.

Once home, our now calm son shared how mad he was that we’d changed his medication. He said that this kind of stuff happens every time we mess with his medication. He said that he was feeling angry, sad and had too much energy and he didn’t know why he felt this way, he had no reason to feel angry or mad, it’s just how his body was reacting.

So this is where the good part comes in. We learned a lesson tonight---If it ain’t broke, don’t fix it!

I hate to say that I regret reducing the Tenex, because without this reduction, we couldn’t be sure that he truly needed this medication. But after this trial, we’ve clearly seen over the last few weeks that once we started reducing the Tenex, his impulsive behavior increased. This affected his ability to get along with others, to be safe and to sleep well at night, since he would have “too much energy” inside him. Even our 7 year old was begging us to put him back on his regular medicine.

I feel sad for my son to have to go through all this crap. Just when things got good for him, the doctor wanted to change things again. My husband and I both agree that once our son is stable, unless he’s suffering from side affects or the meds stop working, we’re going to leave his medication alone, even if that means a fight with his doctor. My son has to go through so much to become stable, I bet he must really be frustrated by “us adults” who are always changing things on him. This is his body and he’s telling us to LEAVE HIS MEDICATION ALONE!

So we’re listening... and if it isn’t broken, we aren’t going to fix it.

Friday, June 25, 2010

Hearing Voices

Our son has been hearing voices.

It doesn’t happen a lot, just every so often.

He hears someone calling his name. He tells us that it sounds like a little girl, not someone he knows, just a voice of a young girl. Sometimes, it sounds like an echo in his brain, like someone is screaming his name in the distance.

More than once, he’s come to me asking “What Mom?”

I’ll say “Nothing, what’s up?”

He’ll respond that he was getting ready for his bath when he heard his name being called by a girl. You can see in his response that he was so certain that his name was being called. Sometimes, he’s alone in a quiet place and will hear the echo in his brain calling his name, other times he’s playing along side his brothers.

We aren’t sure what to think of this. Our therapist is keeping an eye on it by having us chart it every time it occurs. Right now, the therapist wants to have our son determine if he’s hearing it outside his head or inside his head and I think it’s safe to say, after observing this past month, that it’s inside his head only.

We’re not concerned that this is a form of schizophrenia. Through my research, I’ve read that bipolar kids sometimes hear voices when they’re manic. I’ve also read that kids can hear voices from their medication. I know our own son had visual hallucinations when he was taking Seroquel, so this fact doesn’t surprise me.

As much as this is a mystery to us, one thing I do know is that my son would like the voices to stop. Recently, he asked if we could pray for him so the voices would go away. I can only imagine how unsettling this must be for a young child. As his parent, I try and reassure him that it’s just his brain playing tricks on him, that he doesn’t have to be scared of it and that he shouldn’t be embarrased by it. I tell him that it’s just like any other illness, it’s just another symptom that we hope to make disappear. Along with our prayers, I hope this is enough to help him deal with this disturbing experience.

As parents, we sometimes use our past experiences to guide us when raising our children. But with my son’s illness, I sometimes feel ill equipped to help him. I’ve never dealt with any of this before, I can only imagine what feelings he must struggle with inside. I can only guess what words can comfort him. I only hope that it’s enough, that I can give him the love, support, understanding and compassion that he needs. In the end, I hope that I can give him enough.


Thursday, June 17, 2010

Braces!


Today was a big milestone, my son got his braces put on! This is huge since we’ve had to put this step on hold for about a year until we felt he could handle the tension and discomfort this would cause. With the recent stability my son has felt, we thought this was the best time to do it. So far, I couldn’t be more proud of him. He’s definitely feeling the pain and we did see his emotions rise up in him, but it was short lived and easy for him to recover from.

More than anything, I’m so proud to see the recent mature changes in him. He too feels the same, reminding me with a grin that he’s only 3 years away from becoming a teenager. But with this pride, comes a step in the right direction. He’s become more helpful at home and sometimes apologizes for doing wrong. He even wanted to wash my car by himself and he did!

As for the braces, he’s showing maturity in wanting to take care of them and accepting the pain as “part of growing up”. In the past, this would’ve never been possible and the pain he felt would’ve been redirected back at us. But instead, tonight when he started to show signs of stress, I just offered an evening of geocaching (a form of treasure hunting) and he was able to forget the pain and have fun with mom.

As for the medication reduction, so far it’s going good. We’ve reduced the Tenex in half and hope to remove it completely, leaving him on the mood stabilizer, Trileptal. We’ve seen subtle changes, he’s appeared more intense a few times and had one rage, but considering that he’s been wearing spacers in his mouth the whole week, preparing for the braces, we can only assume that he’s reacting to the discomfort and not the reduction in medication. Even today, he said that he was doing good with his braces because Trileptal was helping him. Then he giggled and said that he’d be screaming in pain without it.

Last night, when we were talking about how good he’s been feeling lately, he mentioned that before Trileptal he “felt sad all the time, but didn’t have anything to feel sad about”. Now, he’s starting to forget how bad he use to feel. WOW!  Three months with a mood stabilizer can make a world of difference not only in his life, but in his memory. I really hope this continues and he can forget it all!

So tonight I’m just happy to share that we’re both smiling, but one of us has cool new braces!

Friday, June 11, 2010

Get a Hobby!

Since I’m anonymous on this blog, I can easily admit that I’m a huge fan of the reality show The Housewives of New York City on Bravo. I seriously love watching all the drama on this show. If you’ve been watching too, you already know that a season long fight took place between two of the housewives over the comment “Get a Hobby!”

This makes me laugh on more than one level, because I’ve actually found this to be rather good advice. What was intended to be an offensive comment to one housewife, has turned out to be a really good thing in my life.

Going through all these challenges with my son, I’ve gotten lost in trying to help him and I’ve stopped having fun somewhere along the way. I became obsessed with reading everything I could to help my son, researching symptoms in the library, spending hours on the web, all good stuff, but that’s how I spent all my free time.

Now that my son has found stability with his recent medication, things have calmed down a lot, so I actually got a hobby! What makes it even more fun is that I share this hobby with my son. We spend hours together sharing this new interest. Not only am I having fun again, but my relationship with my son has been mending through this time. We’re spending time focused on something other than his challenges and I’m enjoying a whole new side to my son. It’s really been a lot of fun!

However, I know that so many parents of mood disorder kids are far from having this type of quality time with their kids. I’m sure this post must seem ridiculous compared to what they’re living right now, but if you happen to find that sweet spot of stability, I highly encourage you to “get a hobby” and to do it together.”

Friday, June 4, 2010

Crossing Our Fingers


Today was the last day of school. So far, so good. My son seems to be thriving with his new medication. He even went on a field trip to a bowling alley, without me (which was a first). In the past, this environment would bring on anxiety from all the loud noises and crowds. To help him along, we came up with a back-up plan for me to pick him up if he couldn’t handle it. I was thrilled to see that not only did he handle it, but he had fun—yeah!!!!

But today marks another phase we’re entering into. We’re going to try and remove one of his medications, Tenex. This is the first medication we tried when he started medication, but since we’ve seen such great success with his mood stabilizer, Trileptal (a more powerful med), his doctor feels he may not need the Tenex anymore.

I’m hesitant since the last time we tried removing Tenex he became very impulsive and wrote a letter telling a kid at school to “die now”. That didn’t go over too well. So we immediately put him back on the Tenex. But then things really got bad, so it became apparent that it was the Seroquel that was causing all the problems. So here we are again, taking the Tenex away, starting by reducing his pills by a 1/2 pill a week.

Oh, I really hate this. This whole “experimental” phase. I wish science had this all figured out, the doctors would be able to take a blood test or do a brain scan and determine what’s wrong with my son. Then they could prescribe the exact med and right dose, oh... if only it were that easy.

But then I realize that we’re lucky to be where we are now, if you consider how society handled mood disorders years ago. If we’d lived back then, would my precious son be taken from my home and living out his days in a psych ward? His illness so misunderstood. Would they try shocking his brain? Or assume he’s possessed and try to drive out the demons? Can you imagine that? It makes me sick to think of that.

But those thoughts don’t make today any easier, especially since we’re in the zone! My son is doing so great, I’m loving “loving” my son. I don’t want anything to mess this up. Even my 7 year old is apprehensive about reducing his brother’s meds. He said today... “We’re reducing his pills? Oh no, that’s bad news for me, since he takes his anger out on ME!”

So I’m crossing my fingers and down on my knees praying to God that this phase goes good, I don’t want to lose my son again to this illness, for he was once lost but now he’s found.