09/03/06

Just imagine….

            You are deathly afraid of being in a dark room. Yet every day you must enter dark rooms and be expected to function in these rooms. How would you feel? The fear intensifies, as you get ready to go into the room. While in the room you must listen to stories and instructions as there will be a test on what you have heard. Everyone around you loves the dark and thinks that you are weird because you can’t handle it. All you can think about is getting out of this room and getting to a safer place. Once you leave the room there is a huge relief that you feel, only to be replaced with the new fear that you have another dark room that you must enter. The fear re-intensifies and you continue on. How many times can you do this before that feeling of fear is overwhelming? You finally decide that you cannot do it anymore, and ask to be taken away from the room. You begin to relax knowing that you will make it through the day. What toll has this taken on you? Are you exhausted? Frustrated? Angry that you’re afraid of something so stupid? Something that you never used to fear?

            Now let's consider where this dark room may show up. Could it show up at the store, school, with family and friends? You will never know when you are going to enter this room. You must always be on the lookout for it. Once you realize that you have entered this room, will you be prepared? Or, will you need to escape instantly. The fear inside you is overwhelming. What would you do, when you are scared to death?

            Childhood Schizophrenia is an exceedingly rare disorder. It occurs in approximately 1 out of 40,000 children. It often involves:

• Positive symptoms including: hallucinations, usually voices which are critical or threatening; delusions, which are firm beliefs that are out of touch with reality and which commonly include the fear that people are watching, harassing, or plotting against the individual; disorganized speech, which is often seen as an inability to maintain a conversation, usually as a result of difficulty staying on topic; or, disorganized or catatonic behavior, which can include behavior that is unusual and bizarre, or can be demonstrated by difficulty planning and completing activities in an organized fashion.

• Negative symptoms including: reduction in emotional expression; lack of motivation and energy; or, loss of enjoyment and interest in activities, including social interaction.

Social difficulties are commonly seen with early onset schizophrenia. These include difficulty making and keeping friends, difficulty with interpersonal interactions, and low frustration tolerance.

            Unfortunately since the prevalence of this disorder is extremely rare in children there is little information available for parents and educators. Three websites that I have found helpful are www.nami.org , www.nascos.org , and www.childhood-schizophrenia.org

A brief summary of Hunter…

            Hunter had a normal childhood and was always very inquisitive. He loved to try new things and was always very friendly. He never hesitated to ask people questions or to start up a conversation with someone he did not know. In first grade he was struggling with school and often experienced nervous ticks. We worked with the intervention team at his school to try different things with Hunter, with minimal success. By third grade, he was tested and it was discovered that he had ADD. At this point he was placed on Adderall. There seemed to be a marked improvement with his attention and ability to complete tasks. By fourth grade, things appeared to be getting worse. No matter how hard he tried, he could not apply what he had learned. Hunter was retested and found to have a learning disability. We continued with the Adderall and started seeing a psychologist, because he exhibited a lot of fears and was withdrawn. After approximately six visits, Hunter told the doctor that he did not need to see him anymore, this was just who he was. He was growing up and changing and nothing was wrong. As fifth grade progressed, we started experimenting with the various ADD medicines, as nothing seemed to be working too well. He started seeing a psychologist again in January 2006 at his request.  He was seen by a neurologist and diagnosed with Tourettes' Syndrome and Obsessive Compulsive Disorder along with Attention Deficit Disorder. He had few friends and seemed to have an increase in fears and anxiety issues.

Hunter started showing signs of hallucinations in March 2006. By April we were given the preliminary diagnosis of Childhood-onset Schizophrenia. Hunter was unable to attend school from April on. The hallucinations that he experienced were visual, auditory, and tactile (where you feel like bugs are on your skin).  The original hallucinations were very violent and aggressive. He was finally able to work with these hallucinations to help them and felt that they were finally turning friendly. He also started having quite a few imaginary friends. At this point we believe the hallucinations have stopped, but he still has a lot of imaginary friends. These friends are all friendly and helpful. Hunter believes that without them he would die. They tell him what to do and how to react in different situation. They go with him everywhere, including school.

When everything started in March 2006, Hunter weighed 93 pounds. He was an active young man, and was always willing to help anyone. He seemed to only make friends with children who seemed to have problems. He felt that they needed him and that he could help protect them and make their lives better. At this point, I would say that he only has one friend. Due to the troublesome hallucinations, we started Hunter on Risperdal. After several weeks and no improvement this medication was stopped. He was taken off of this medication and that’s when he started experiencing the tactile hallucinations. They were very painful for him and he simply could not function. At that point we started him on Seroquel. The problem with Seroquel is that it takes quite some time before you can get to a dose that works for you. We started with 12.5mg and are now not up to 600mg. The hallucinations seemed to have eased around August 2006. He still has huge anxieties, but has been able to have friends over again, go out for a quick dinner and go out for a short period of time. Each activity seems to take its toll on him. He tires rather quickly and has put on over 40 pounds since the medication was started. He is easily frustrated and does his best to hide everything from others. The only one he usually confides in is his mother. At times, I not sure that he tells me everything. He knows that the doctors want to get rid of the hallucinations and this has made him very upset. I believe that they are gone, but have to trust what he is telling me. At times I really wonder if he’s telling me the truth.

Hopefully this will help you to understand Hunter a little better. He is a child with a huge heart that is full of love. He wants to help everyone and make things better for others. He is easily frustrated and often fearful. He is working hard to be “normal” as he calls it, but knows that he never will be.

A lot of people tell me how sorry they are for us. Please don’t do that. In some respects we are very lucky. Hunter has been able to stay home though all of this. Most children end up hospitalized until the medicines can be adjusted. Hunter's still the same sweet kid with a huge heart and hopefully you will come to see the Hunter that we know and love. The best thing to do is to see him with an open mind and lots of understanding. He has a way of seeing things that we will never know or understand. Maybe he is one of the lucky ones who get to see people for who they really are, and isn’t afraid to say the truth.

Please don’t judge me, for you don’t know who I am

When you look at me, what do you see?

You see a normal looking kid who appears happy as can be

or perhaps you see a kid who's just being a brat.

How quick we are to judge when we’re all so complex.

What you so quickly see is not who I am,

I’m unique

I’m special,

just like you.

When you have a problem who do you turn to?

Someone that will judge you?

That’s when I see how special my friends are.

They like me for who I am.

they see the real me.

They are there all the time,

and they help me in everyway.

They love me and I love them.

So, why is this wrong?

Why do people want my friends to leave?

They help me in everyway

Are people jealous or confused?

Or do they just not understand.

Just thing about it…

You see a fat man at McDonalds

and you assume he’s fat because he has no self-control

or he is lazy,

But could it be a medical condition?

Is it due to medicine?

Did his parents raise him to be fat?

We’ll never know, because we really don’t care,

we just want to judge and be on our way.

You see a child in the store throwing a temper tantrum and assume he is a brat.

Is he really?

Maybe he’s sick and his parents don’t know it yet.

Maybe he has a handicap and can’t help it,

or maybe he’s tired and just needs a nap.

We’ll never know because we really don’t care.

We just go on our way

quick to judge and look away.

Never ready to give that helping hand.

That’s why I love my friends

they’re always there and they always give me that helping hand

You see…

When you look at me,

you see an overweight 11-year old boy

who at time seems to be a real brat with no manners.

What you don’t see…

is a loving young man who has gained weight due to medicine?

Medicine he must take because the doctors want his special friends to go away.

I’m unique.

I get to see more than what everyone else sees.

I’ve learned not to judge a person based on first appearances.

That there is always more to a person than meets the eyes.

I love my special friends and thank them for helping me to see

the real work through my eyes only!