Thursday, September 30, 2010

Bring Change to Mind



I recently discovered an amazing campaign created to end the stigma associated with mental illness. I know many of you reading may be thinking... oh this is so yesterday’s news, but for those like me, that are new to this online world, I just had to share it.

The campaign is called, Bring Change 2 Mind. The PSA above was directed by Ron Howard, which you may remember from Happy Days. He’s also the executive producer of one of my favorite tv shows Parenthood. What’s also cool about this PSA is that actress Glen Close appears with her sister Jessie, who has bipolar disorder. All of the other individuals highlighted are real people living with a mental illness. The purpose of this campaign is to show the world that those suffering from mental illness are everywhere, they’re our spouses, our children, our friends, they’re an important part of society and they shouldn’t feel like they should hide their illness. In fact, hiding their illness just gives it more power, bringing them more pain. It’s time we change our view of mental illness, it’s a disease like all others, it’s time to let go of the stigma and bring change to mind.

Please visit this website, I was touched by many of the real life stories that are presented there. I found the interview with Glen Close and her sister to be very touching, as well as, the many other stories there. As for the PSA, I thought it was beautifully done, this is definitely worth checking out!

http://www.bringchange2mind.org/


In an effort to do my part in helping to end the stigma of mental illness, I wanted to post the Fact or Fiction list found on the website under:
http://www.bringchange2mind.org/index.php/learn-the-facts/fact-vs-fiction


FICTION: People with a mental illness are often violent.


FACT: Actually, the vast majority of people with mental health conditions are no more violent than anyone else. People with mental illness are much more likely to be the victims of crime.


FICTION: Mental illness is a sign of weakness.


FACT: A mental illness is not caused by personal weakness—nor can it be cured by positive thinking or willpower - proper treatment is needed.


FICTION: Only military personnel who have been in combat can suffer from PTSD.


FACT: While PTSD is prevalent in men and women who have seen combat, experiencing or witnessing a traumatic event can trigger PTSD, including violent personal assaults such as rape or robbery, natural or human-caused disasters, or accidents.


FICTION: People with a mental illness will never get better.


FACT: For some people, a mental illness may be a lifelong condition, like diabetes. But as with diabetes, proper treatment enables many people with a mental illness to lead fulfilling and productive lives.


FICTION: Children don’t suffer from mental illness.


FACT: Millions of children are affected by depression, anxiety and other mental illnesses. As a matter of fact, 1 in 10 children suffer from a diagnosable mental illness. Getting treatment is essential.


FICTION: “Mental illness can’t affect me!”


FACT: Mental illness can affect anyone. While some illnesses have a genetic risk, mental illness can affect people of all ages, races and income levels, whether or not there is a family history.


Wednesday, September 29, 2010

Seeking Help for the First Time

We were on summer vacation with my husband’s family, all of us, in one beach house right at the shoreline. It was one of the best vacations and one of the worst. During this trip, our son who was 7 at the time, went into a rage in front of our relatives. Because we wanted to protect our son’s privacy, this was their first exposure to how much our son was struggling, for me, it was clarification that our son needed professional help.

After my son’s rage where he was screaming that he wanted to kill everyone, I clearly remember my son staring out the window at the ocean waves crashing on the shore and quietly saying, “I’m God’s mistake, I wish I was dead, I should never have been born.”

Even though this was that last thing I wanted to have happen at our family reunion, I was relieved that this struggle was no longer a secret to our relatives. I also got confirmation that what we were seeing in our son was not “normal behavior” and I was encouraged to seek professional help.

But when we got home and made the appointment with a specialist in our HMO, I honestly was scared. I had no idea what pandora’s box we were opening. I lied awake at night with images of our son being taken away because he threatened harm to others during his rage. I was worried that I would be accused of being a bad parent or even worse, we had a bad kid, which I knew was not true.

I’m motivated in writing this post to share that none of those things happened. I hope to encourage you to take this step if you haven’t already. Though our experience has been far from perfect, I’m so glad we took this step and entered into the world of mental health.

If you’re still hesitant, here’s a peek of what happened when we made an appointment with a specialist in our HMO.

First, we met with a psychiatrist, I believe his job was to hear our case and determine if we should meet with doctors in his department. We had to read a policy statement and sign our names to a document that talked about patient rights in mental health. I will admit that I was still scared about how they would react if they knew our son said “I want to kill you!” in a rage, especially after we were told that they have to notify authorities if he has threatened harm to anyone, so we didn’t share that detail just yet, instead we talked about all his symptoms and the parenting techniques we’ve tried.

From there, we were referred to the pediatric mental health department for a group session for parents with children that have ADHD, mood disorders, conduct disorders and such.

I will admit that this appointment was odd. We met in a large room with a lot of parents, all looking like deer in the headlights with no one saying a word. It was like we all had this dirty little secret and didn’t want to share it with anyone, yet there was this part of me that was thinking... so what’s wrong with their kid, could it be similar to mine?

After a group lesson on how our HMO works with children, we were all divided up to individual doctors that did a second interview of our child’s case. This meeting was a lot like the first, just reading off lists of symptoms and such. After that, we were approved to seek therapy and see the psychiatrist, we walked away with a future appointment and doctors assigned to our son.

Then came the first appointment with our new therapist. It was a basic overview of everything we had to share. At that time I did reveal all the details, even the ones that included his threats to kill us. I was relieved to discover that to our therapist, this was no big deal. It was a very common thing for kids say during a rage and wasn’t considered an actual threat that needed to be reported. In fact, he shared that he had heard much worse.

I walked away from this first appointment feeling empowered. It was an incredible feeling to hear someone say that this is not your fault, this is not your child’s fault, your child has a chemical imbalance and we’re going to help you.

I cried during this meeting, it felt like I didn’t have to do this alone anymore, I had a team of doctors that had seen these same symptoms in many other kids and I was relieved to know that many got better over the years.

If you’re in this place yourself, wondering if you should take the step to seek professional help for your child, please do it today. You can’t do this alone, you need all the support you can get. Even though our experience with our doctors has been a struggle, I’ve never regretted making that first call and I feel blessed that we have access to this care.

As for my son, I asked him how he felt about this first appointment, he said, “He was glad we did it, it felt good to finally see a doctor.”


Sunday, September 26, 2010

Spiritually Speaking

I’ve been told that the two topics you should never bring up at a dinner party are politics and religion. I wonder if this rule applies to blogging?

Well if I didn’t share my spiritual side and my struggles regarding my son’s mental illness, then I would be hiding a big piece of who I am. And one of the things I committed to do when starting this blog was to be honest and open, even when it wasn’t pretty so that others may not feel so alone.

So bear with me as I open up my heart to you about a spiritual challenge I’ve faced this year.

I’ve been angry at God.

I’ve felt attacked by God.

I’ve felt unloved by God.

Boy it’s hard to type out such ugly thoughts. But I’ve felt them and I would be a liar if I told you I didn’t.

Realizing your child has an illness is one of the deepest pains a mother can feel. But with a metal illness, this feeling is even more complicated.

One moment your child is attacking you physically, hurting your own flesh, screaming words of hate and disgust.

In response you feel anger, hatred toward the behavior you are up against. You’re fighting someone who has invaded your home.

Then the next minute, your child is a heap on the floor, wanting to kill themselves, crying out for help.

And you push aside you former resentment and scoop up your child, rocking them in your arms to bring them comfort, to rescue them from their pain.

The best way to describe my life at times is... I’m living in hell.

Now as a Christian, I’m far from perfect, I mess up a lot and fall short of being a good example for others. But I believe that God has the power to heal my son, to rescue us from this hell in our home.

But it hasn’t happened yet.

And it makes me angry. It makes me feel mad at God, it makes me feel like God is punishing me, like he doesn’t love me.

Honesty isn’t always pretty, huh?

I share these thoughts with you, not because I believe they are true, but to show you the challenges I’ve faced in my faith with God. It’s times like these when I’ve felt great sorrow. But thanks to God, He’s showing me His love and reminding me that He’s by my side, it’s through him that I’m getting through this.

This past weekend I went on a women’s retreat with my church and the theme was “Let Go & Trust God”. I have to say this weekend was designed for me. I realized that God isn’t punishing me, he really does love me and loves my child. I was able to connect with other women who’ve faced overwhelming challenges too. In the case of a dear friend, her son was diagnosed with a deadly brain tumor. When she asked the doctor if any of his former patients had survived this cancer, his response was no. In a testimony like this, I was able to see how God was working in her life and it made me realize that even though God doesn’t cause suffering, he can still use it for good. In the case of this child with the brain tumor, he’s still alive and now tumor free. He’s an example of how God does bring healing and restoration, even when the odds are against you.

I know my testimony is far from being written, but I can honestly say that God has already used my suffering for good. I think I’ve changed for the better as a person. I’m more patient, more compassionate, more tolerant, more honest and more forgiving. I’m also trusting God more lately, I’ve realized that I can’t fix it like I want to, so I have no choice but to lean on God. I’m still type A, but I’ve become more relaxed in wanting to control everything. I don’t strive for perfection, like I did when I was younger, instead I’m learning to let go in many good ways. I’m more able to focus on what really is important in life, instead of what society teaches us. I’m also learning to live in the moment and appreciate simple moments of joy. I don’t wait for a perfect day to find happiness. In addition, I know this blog has brought good to some of you, I cry every time I receive an email from a follower that has been helped by reading my story and have been encouraged by many of your own stories.

But let me be straight with you and say that I don’t have this all figured out, rather I’m encouraged and focused on the right things, right now. Believe me, I have a long way to go before I can completely let go and trust God. I’m sure I’ll be reviewing this post for encouragement in the future when I lose my way.

But to know that God is using my challenges for good, that He’s taking my jagged rocks and creating beautifully polished stones out of them, I feel nothing but hope and gratefulness.

I feel wrapped in God’s love.



Friday, September 24, 2010

MRI Results!

I’m happy to share that my son’s MRI results came in as “normal”. The report stated that there were no tumors or lesions. This is a huge relief, we’re thrilled that he didn’t have something more serious going on. But I will admit that I wasn’t jumping up and down with excitement, because a part of me wished that there was something simple that they could fix and immediately cure him. I know that’s a silly thought, but after seeing my cousin healed after a benign tumor was removed from her pituitary gland, I know that these stories exist. On the flip side, I know that finding something could also bring devastating news. So I’m very thankful and know that God has answered our prayers.

Surprisingly, a funny thing showed up in the report. The doctors were not able to view the olfactory part of the brain because of his dental expander located on the roof of his mouth. I guess this metal caused “significant problems” in being able to view the image. Thankfully, this part of the brain deals with sense of smell, so I wasn’t too concerned about this. However, I will warn parents that are thinking about getting an MRI that you may want to talk about this with your doctor first. We were told that his dental work would be no problem, but they were obviously wrong. I would’ve been so upset if after putting our son through all that to find out that they didn’t get a good look at the vision or hearing part of his brain. So keep it in mind, maybe you’ll want to have the metal removed before putting your child under for an MRI to avoid this.

Another thing to consider is requesting copies of the images. I’m currently looking into this with our care provider. I thought it would be a good idea to have copies, in case 10 years from now they figure out how to see mental illness in brain scans. It may be a long shot, but you never know!

So, after all is said and done, do you wonder if it was worth it all to get these results? I would answer, absolutely! With these results I feel like I can move forward with confidence that we’re treating my son correctly, that he indeed should be taking his mood stabilizing drugs. I now have a peace about it and no longer wonder if we’re doing the right thing.

And peace of mind is priceless!

Wednesday, September 22, 2010

Medication Warning!

For those of you that have children taking the liquid form of Trileptal, you may want to check with your pharmacy on it’s availability. Today we got a call from our pharmacist telling us that they couldn’t refill our son’s prescription because the supplier has it on backorder because the manufacturer is all out. We were told that there was no date of expected delivery at this time. When I asked how long this could take, her response was anywhere from a week to 6 months.

This is a first for us, I never thought about my son’s meds being unavailable because of supply and demand. I guess you can expect it with the latest ipod, but not something as important as medication.

Tonight, I’m happy to report that our pharmacy was able to track down a few bottles left in stock at another hospital and will have it ready for pick up in the morning, but for those of you that need a refill soon, you may want to check and see if this has affected the supply in your area.

Good Luck!

Tuesday, September 21, 2010

Getting an MRI

Well we survived the MRI. It all went pretty well. For those that haven’t been through it, here’s a peek into our day.

We had to wake our son up at 6:15 am for his final meds and a drink of clear fluids, than after that he had to fast until after the MRI was complete.

At 8:15 we checked into our hospital. Since he was going under general anesthesia, he had to be admitted as an outpatient. This increased our copay a lot, but we’re so thankful to have insurance, I won’t complain.

At 9:15 we were pulled into a separate room where the doctor told us that if we used gas to knock him out prior to putting in the IV, we would be increasing his risks for something bad to happen. She said that the danger zone increases in length the older they get. So for a baby, this is a low risk option, but for our son, the risk increases dramatically.

So, out goes the plan to use gas to prevent him from becoming upset over the IV. But fortunately, things worked out pretty good.

Next, she had our son drink a small dose of medication that would make him “silly drunk”, as our doctor described it. They were so right! Within minutes, our son was acting funny, we were all laughing as we watched him try and carry a conversation and sit in a chair.

At one point, I started to video tape him and I asked him what he wanted to say to himself, since he would have no memory of this moment. He looked into my camera phone and said, “Helllooo (insert his name), I’m from the fuuuture.” (while doing a funny hand motion). I have to say that we’re all still laughing about that today and he loves watching the video clip.

Based on his reaction to this medication, I knew we were going to be ok with putting the IV in while he was awake. Once he was lifted onto his gurney, I started to do a head massage to keep him distracted while they put in the IV. Once they were done, he looked at his hand and in a very calm, curious tone he said, “Hey, there’s a shot in my hand.”

Then, they wheeled him away into the exam room where we were not allowed.

Yes, I cried at this moment. There’s that gut wrenching moment when your child is taken from you and you have to wait for his return. It just felt so wrong, I wanted to be by his side. Thankfully, I had a feeling that he would be ok and I was able to pull it together while we headed to the waiting room.

About an hour later, we were called into the recovery room to see him. He was sound asleep hooked up to monitors and a mask on his face. We were told that he needed to wake up slowly so he didn’t have a bad reaction, becoming violent and wanting to take off. This is a side effect of general anesthesia, so our doctor gave him some extra medication to help him sleep a little longer to avoid this side effect. We were also warned that his throat may hurt from the tube they put down it, as well as, bruising on his lips and possible damage to his teeth. Our prayers were answered that he was free from all of these side effects. He slept so long that the nurse finally woke him up, knowing we were now out of the danger zone.

Our son woke up very slowly and was surprised to not remember much of anything. Once home, it took him another few hours to become active and want to eat again.

Towards the second half of the day, he started to have mood swings. We could tell he was having a hard time controlling himself, then his mood would switch from anger to sadness very quickly. I wasn’t too surprised this was happening since he’d been through so much that day.

I’m happy to report that he woke up great today and seemed to be stable. Now we’re anxiously awaiting the report from the neurology department and I’m letting out a big sigh of relief that the MRI went so well.

Monday, September 20, 2010

Getting Ready for the MRI

It’s Sunday night and we’re all packed for the doctors. We even have our son’s favorite stuffed animal tucked away along with the essential items, a DS with a Lego Star Wars Game. I think it’s safe to say that we’re finally ready for our 8:00 am MRI appointment tomorrow morning.

Since it would be hard for our son to sit perfectly still during the MRI for 45 minutes, we decided to have him put under general anesthesia. I’ve been told that the exam is very claustrophobic and the noises are very loud and unsettling. I don’t think it’s possible for him to do it any other way.

My son seems ok with it tonight, in fact, he said he’s kinda excited since it all seems so interesting. He told his dad that he gets to take a nap while the doctor takes pictures of his brain. To be honest, I think he’s just so excited to be getting out of school, what kid doesn’t like that!

My most immediate concern is that he’ll do well being under general anesthesia . It’s always scary going through procedures that carry risks. I remember when he was put under for a kidney test when he was younger and I was asked to sign papers acknowledging that one of the risks of anesthesia is death. I remember thinking... do I really have to sign this? It felt like I was signing approval for such dreadful results. But I had to remind myself that these unnerving papers are for lawyers and lawsuits.

So yes, I’m aware that there are risks to this procedure, but there are risks in taking medications to treat a mood disorder, so as a parent, I’m stuck between a rock and a hard place.

We need to have this MRI to rule out any physical problems that may be causing all his symptoms, as his parents we feel it’s our responsibility to make sure our doctors investigate this.

The strange thing is, what are we specifically praying for? Are we praying for them to find something that can be removed? If not that, then are we praying for nothing to appear, which means this is a chemical imbalance and could last a lifetime? I find it difficult to pray specifically.

Then tonight, as I was tucking him into bed I had his younger brothers (ages 5 & 7 yrs.) surround him so we could put our hands on him and pray for him. It was, as you can imagine, kind of sweet at times and kind of frustrating when I had to stop during prayer to tell his brothers to stop “poking” their older brother. But it warmed my heart to hear my 5 year old son pray for his brother to, “feel better in Jesus’ name, amen”.

I think sometimes children see things clearer than adults, so I’m taking his lead and praying that my son will feel better, in the name of sweet Jesus, amen.

Friday, September 17, 2010

Putting My Oxygen Mask On First


I love the metaphor, “Put your oxygen mask on first,” then help your child.

This philosophy rings true in so many ways. Yet it’s so hard to do.

Raising my children, facing all the challenges I face, along with the darts that life throws at me, it’s so easy to become run down and to be honest, useless.

I think that’s what happened to me this past summer, I was all used up and useless. I felt like I wasn’t the mom I wanted to be, I wasn’t the wife I wanted to be and I couldn’t even think about being a friend.

So with the kids back in school and my son more stable, I jumped on the opportunity to live out this philosophy. I started carving out “me time” during the week. By the way, I really hate the phrase “me time”. it sounds so selfish, when in fact, I think it just multiplies joy for everyone.

I began doing a morning bible study with a cup of tea, just to get my head straight and put God first in my day. Now I wish I could say that I do this every morning, but that isn’t the case and I’ve chosen to not beat myself up over it. I’m just happy if I can get the time a few days a week.

After all my chores are done, I try to do something I like while the kids are in school at least twice a week, like read a favorite book or treat myself to a Starbucks while I visit a friend. I’ve even taken myself out to lunch... alone... and it was fantastic!

Then, thanks to my family, I started going on walks every Thursday night with my aunt and cousins, thankfully my husband tucks the kids in that night so I don’t have to rush home. This is such an amazing time, I feel so wrapped in love hanging out with those that love me and my family. Plus, girls just need girl time!

I know this isn’t an impressive list and I’m sure it may seem pretty boring, but it’s lifted me up. Just this week my husband commented on how much he loved the new me, that I seemed happier and it was making him happy. That my friends... is joy being multiplied.


Wednesday, September 15, 2010

Surviving Blood & Needles

I bet I’m not the only one to see their child lose it when trying to get blood drawn. To say that our son hates getting shots is an understatement. The last time he was told, “we need to draw blood”, our son went into a rage that put bruises all over my husband’s arms.

Unfortunately, blood work is a necessary part of treating mental illness. So getting creative and using all the resources you have is essential. Today, we needed to draw blood to prepare for the MRI, as well as monitor the effects of his current medication. In preparation for this lab work, we worked with his psychiatrist and came up with a plan to use 2 new medications to improve his experience.

I have to admit, after our positive experience today, I’m disappointed that we didn’t know about these medications before. I seriously had no idea that we could numb his skin with a cream and with a single pill we could calm his anxiety. It dumbfounds me that these incredible tools have been at our fingertips, yet we didn’t even know they existed.

So for all you parents who dread hearing the words, “We need to do some lab work”, here are some amazing tools you can ask your psychiatrist about, along with a few creative ideas of my own.

First, to help ease our son’s anxieties, our psychiatrist prescribed Ativan (Lorazepam) to be taken an hour before the lab work is done. This helps to relax him and calm down the anxiety that usually brings on the rage. Today was our first time using it. Our doctor described it as having the effect of “being drunk on tequila, it should make him feel really good and relaxed”. There’s a rare chance that your child may respond with more anger, “like an angry drunk”, as she described it, so it’s recommended to do a trial run prior to the lab work to make sure it’s safe.

I was pleased to see that he responded perfectly to the dose we gave him. He appeared calm and peaceful without looking overly tired or acting drunk. Thank goodness!

Next, we applied a topical cream prescribed by our psychiatrist called EMLA (Lidocaine-Prilocaine). It’s like novocaine for the skin. It numbs the area so he doesn’t feel the needle stick him. To apply it, we put a pile of it on his inner arm, then wrapped this area in saran wrap to keep it in place. It takes about 30 minutes to have the full effect.

Once we got into the waiting room, I remembered a new app that I downloaded on my iPhone called Binaural Beats (It’s free!). It has a selection of sounds to influence your brain to concentrate or relax. So I immediately put headphones on him while he waited. He liked it so much that he listened to it through the whole procedure.

Finally, once he was in the chair, I took his opposite hand and gave him a hand massage while I lead him through deep breathing. I wasn’t sure if this helped him, but afterwards, he mentioned that the hand massaged helped him focus on something that felt good, taking his mind off the needle in the other arm.

I have to say, I was totally impressed on how well he did. Not once did he try to run or cry, I think I even saw a small smile when I complimented him on how well he was doing.

I can’t say what one thing worked the best, but I know the medication helped keep him calm. He mentioned in the morning that he wasn’t as scared as last time since he knew he could take medication to help. As for everything else, it was icing on the cake.

* * *

If you’ve discovered your own tips for surviving shots with an anxious child, please share, I can always use a few extra tricks in my bag!

Sunday, September 12, 2010

Fieldtrip!

Today, we’re going on a fieldtrip! I was asked to write a guest post for the website Ask A Bipolar. I know that my son has not been diagnosed with bipolar, but raising a child with a mental illness, uncertain of the diagnosis is something familiar to a lot of parents searching for answers. If you haven’t visited this website yet, you need to check it out! Recently, the website expanded it’s content with more writers and even a forum. You can read my guest post today at the following link:


Happy Sunday!


Friday, September 10, 2010

My Little Hidden Fear

A few weeks ago, I took my boys to the dentist. Actually, it’s more like an arcade with drills in the back, than an actual dentist. My boys love going there because of the amazing video games, a space ship that’s coming down from the ceiling and coolness everywhere. Even the kids I babysit yell with excitement when we take my boys to the dentist.

Of my 3 boys, my youngest isn’t as thrilled. He hates the dentist, just like he hates the haircut place, anything that involves putting noisy things close to his head he can’t tolerate. So when the time came for our youngest to head back for an examination, he let us all know that he wasn’t going in without a fight. So after much screaming and kicking, I picked up my boy and tried to walk him through the door to the dentist. Now he’s only 5, but he’s a strong little dude. Well my plan backfired and somehow I was tripped up by his kicking legs and BAM! I fell to the floor, flat on my face in the lobby.

I have to admit, I was hurt pretty bad and embarrassed just as much. I could hear the man behind me ask if I was ok, then tell the receptionist that he thought I was injured. I remember that I couldn’t even speak, since I knew that the only words that would come out were not kid friendly. So there I was, a mom with a bad limp, begging the staff if they had any other ideas on how to get my fired up, redhead son into the dentist chair.

After a lot of coaxing, he finally went in, but they were never able to do a cleaning, so I had to be happy with just x-rays and a report that he was cavity free. But this day brought back that little hidden fear I have that my youngest may have “issues” as he gets older. You see, my oldest who has a mood disorder didn’t show significant problems until he was 7 years old, but when he was younger, I do remember that I couldn’t brush his teeth without pinning him down, just like my youngest is today. And after the surprising looks from the dentist and the haircut place and hearing questions like “What’s wrong with him?” You feel that thought creep in... what if my little guy struggles too, what if this isn’t a phase but only a precursor of what’s to come?

It’s really too soon to tell, but my youngest has had night terrors like my oldest, he’s a very picky eater and he’s had a hard time conforming to authority which was seen last year at preschool when we had to have a parent/teacher conference on the first day of school. As the school year progressed, his teacher would say, (while moving her hand in a rolling wave motion) your son is just up and down during the day.

Now this all may be just a little boy imitating behaviors he’s seen in is older brother and like many other kids, has some childhood fears, but it’s hard to not wonder if he’ll be ok. I guess once you have a child with a mental illness, you tend to look at your other kids with a critical eye.

If you asked me today if I thought my little boy has a problem, I would say “No! Absolutely not!” But I have to be honest and admit to you that when I was on the floor in the dental office, the thought did cross my mind for just a second, then I picked myself up and looked at my little guy and thought... naahhh.

So can you relate, have you had these thoughts too?

Tuesday, September 7, 2010

Increasing Trileptal... again


After our son’s recent rage and visit to the psychiatrist, we were left with 2 options. The first being to increase his current mood stabilizer, Trileptal, in hopes to level out his mood and thus remove the rages or we can add a third medication, Risperdal, to the treatment.

Risperdal is an antipsychotic that is very effective with anger and rages. The downside is that this medication moves us into the next level of medications that come with more risks and require ongoing blood draws to monitor his health and any possible side effects.

During our appointment, our psychiatrist flat out told us that if it were her child she wouldn’t use that medication because of the risk of Tardive Dyskinesia. This is a condition typically brought on by long term use of antipsychotic medications that produces uncontrollable, repetitive movements in the face. Now this doesn’t happen to everyone, it’s a risk like all the others, but our doctor explained that this condition can become permanent, which is why she tries to avoid it.

(I would like to share that this same doctor sent in a prescription for this medication to be filled by the pharmacy and had a nurse call us twice to start our son on these pills prior to this appointment. I find it disturbing that she would take these steps when we’re just a patient on the phone, but once we were in front of her, she advised us not to use this medication. Lesson learned: I will only change my son’s medications after I’ve met with our psychiatrist face to face.)

Then we have our personal experience with this medication. The boy I babysit is autistic and over the summer his parents tried Risperdal for his treatment. They found it to be the most effective medication they’ve tried to date, it completely leveled out his behavior, however, he gained 13 pounds in a month, he started to grow in the breast area and he developed a facial tick, so they had to take him off it and try another medication.

So with this information, we’ve chosen to continue to increase his mood stabilizer, Trileptal, praying that this will help him through his mood swings of anger he’s been feeling. But to be honest, if this doesn’t work and his rages continue to become more violent, putting us all in harms way, we may have to move on to Risperdal. I guess we’ll cross that bridge if we get there.

• • •

And for those parents that are currently using Risperdal or considering it in the future, please don’t make any decisions based on what you read here, I pass no judgement on you, and I don’t claim to know better than any of you, this is just our experience with our psychiatrist and I know that as parents we’re all having to make tough decisions based on our own circumstances. In fact, I’m thrilled that for some families, this medication is helping their child tremendously. 

Saturday, September 4, 2010

Shooting Stars


As evening approached, I took my boys to our community pool for a night swim. When we got there, my boys dived in, splashing around with big smiles on their faces. With the exception of my oldest, who felt overwhelmed by the other swimmers and immediately wanted to go home after about 3 minutes. I knew that there was no crowd and the pool was big enough for the few families that were there, but I’ve also come to realize that I can’t always make things better for him. So we called Dad to come and pick him up from the pool.

After he left, I felt very sad for him, he couldn’t even enjoy a simple swim at the pool, but I was also proud that he was aware of his limitations and took steps to help himself before he became overwhelmed and lashed out at someone.

I think my middle child was also feeling sadness for his older brother.

A moment later we both witnessed a bright shooting star that traveled across the sky above us. Then my middle child came up to me and said, “Hey Mom, I just saw a shooting star and instead of wishing for a cool toy, I made a wish that my brother would get better someday.”

I was touched by this moment, it reminded me that there’s so much love in our family and no matter what challenges we face, we face them together.


Thursday, September 2, 2010

Success!

I only have a few minutes, but I wanted to update you on our meeting with our psychiatrist. I was able to tell her that I was unhappy with her care, explaining that I didn’t feel like she listens to me and dismisses our concerns.

For the first few minutes, she continued to cut me off, saying what she wanted to say without even listening to my questions, just moments before my husband stepped in and asked her to stop cutting me off, she changed. It became obvious that she realized that she was doing the very thing we were complaining about. So then the listening began and she spent a lot of time answering our questions.

When we explained that we wanted an MRI to rule out any physical problems, she smiled and said “I agree, that’s a good idea.”

Yep... I was stumped by that response, so I asked her, “Then why did you tell the neurologist that the MRI wasn’t necessary, thus declining approval to have it done?”

She seemed surprised, then as we back tracked through the details she realized that she made an error when talking with the neurologist thinking he was just calling to talk about our son’s case, she also confirmed that it was a mistake that he was diagnosed with Temper Dysregulation Disorder (more on that later). In the end, all these mistakes were due to her not listening to the neurologist and just talking away... like she does with me.

So after an apology, she ordered the MRI! (I’m now doing a happy dance)

The neurology department just called and scheduled it to be done in a few weeks.

I guess it’s worth it to fight the fight!