Sunday, October 14, 2007

The Monster


It's a monster.

3 letters.

It controls Paige's life. Every aspect. Every move she makes. Every move we make.

I've waited to post this because we were trying so hard to focus on the good news at school. But, OCD doesn't care about the good news. That freakin monster never sleeps.

Her arms and legs have sores all over them. She picks the scabs because OCD tells her to. Her clothes have blood stained spots on them. Her sheets too.

Last week OCD told her to get killed. Hubby and I were walking in the parking lot, talking to her and then she was gone. We turned around to find her in the middle of the lot. We yelled to her to come back to us. She cried and explained that her OCD thoughts told her "to run into the parking lot and get killed."

She tries to fight this monster. She really does. But, according to her, the harder she fights, the stronger and louder the OCD thoughts get. She tries to give in to it, just a little, to make the thoughts go away.

She came home Friday, after spending a few days with her grandparents. She had a lot of fun. They treat her really good and she loves being there.

After a few moments of being home she started to cry. She climbed up on my lap and was shaking, her arms spotted with bloody scabs.

She begged me to help her stop.

She begged me to find a different medicine.

She begged me to stop the thoughts.

She fought so hard to control the picking while she was at her grandparents house. Now that she was home the floodgates were opened. Normally we tell her not to pick but to fight the monster instead. We encourage her and tell her that her brain is in control and she can beat the OCD monster. But, that day she was losing. By telling her to fight it, it caused the monster to get stronger. So, we told her to go ahead and pick. She was so relieved. The look on her face was one that we hadn't seen in so long. Even though the monster was winning and she had open boo boos, she was relieved to not have to fight.

We took her out to her favorite place to eat and then kept her busy by going to a few stores and being silly in the car on the way home. It was nice to hear her laugh so much.

But, when we got home she sat by me and begged again.

"Help me Mom."

I'm really trying Paige.


Jennifer said...

Has she been tested for schizophrenia? Hearing voices is very 'schizophrenic'.

My mother has schizophrenia and bi-polar and her medication choices change often.

"Children with schizophrenia experience difficulty in managing everyday life. They share with their adult counterparts hallucinations, delusions, social withdrawal, flattened emotions, increased risk of suicide and loss of social and personal care skills. They may also share some symptoms with—and be mistaken for—children who suffer from autism or other pervasive developmental disabilities, which affect about 1 in 500 children. Although they tend to be harder to treat and have a worse prognosis than adult-onset schizophrenia patients, researchers are finding that many children with schizophrenia can be helped by the new generation of anti-psychotic medications."

When my mother gets like that, like last weekend, she goes into a mental hospice and get intensive treatment because she has a history of trying to kill herself...

I would be very leary of the care your daughter is (obviously, not) getting if she is actively trying to kill herself.

Jennifer said...

Your readers may find this link helpful:

"Although it's unclear whether schizophrenia has a single or multiple underlying causes, evidence suggests that it is a neurodevelopmental disease likely involving a genetic predisposition, a prenatal insult to the developing brain and stressful life events."

"...children who become psychotic prior to puberty show conspicuous evidence of progressively abnormal brain development. In the first longitudinal brain imaging study of adolescents, magnetic resonance imaging (MRI) scans revealed fluid filled cavities in the middle of the brain enlarging abnormally between ages 14 and 18 in teens with early onset schizophrenia, suggesting a shrinkage in brain tissue volume. These children lost four times as much gray matter, neurons and their branch-like extensions, in their frontal lobes as normally occurs in teens. This gray matter loss engulfs the brain in a progressive wave from back to front over 5 years, beginning in rear structures involved in attention and perception, eventually spreading to frontal areas responsible for organizing, planning, and other "executive" functions impaired in schizophrenia. Since losses in the rear areas are influenced mostly by environmental factors, the researchers suggest that some non-genetic trigger contributes to the onset and initial progression of the illness. The final loss pattern is consistent with that seen in adult schizophrenia."

Jenny said...

Wow. Paige: I DEFINITELY sympathize with you. I have been picking my whole life. I have a picture of when I was a toddler, picking at a scab while sitting in the yard. It's horrible. I can't stop it, either. I hated how teachers and doctors thought that my parents were abusing me, because they weren't. People aren't very understanding about it. I wear long sleeves and pants all the time, so people don't stare or ask questions. It's annoying, and none of their business.

If only I knew of someway to help you stop... I'd share the advice. Unfortunately, as a nearly 26 year old woman, I can't seem to stop myself. I can't claim to know why you do it (I know the feelings I get when/after I do it), but I wanted to tell you something very important. You're not alone. Please try to stop, but I know it's hard, and don't get discouraged if you try and can't. You have understanding parents, which is wonderful.

I wish I could help you, too.

Amy said...

Hi Stacy,

Been reading your blog for a while, but haven't posted yet since I'm neither a mother, nor a former preemie. Found my way from the "i'm not sorry" blog.

Anyway, I can totally sympathise with the picking and scratching. Do you know if one of the reasons she picks is because its itchy? Does she scratch in her sleep? I'm 24 and I sometimes literally can't stop myself from scratching my eczema bloody because it itches so badly. I discovered a few weeks ago that an ice cold compress helps tremendously and stops the itch of even a very severe allergic reaction.

I really hope you find some way to help Paige with this problem.

Sarah said...

I don't know anything about this, I have no link for good information, but I do know that some OCD/schizophrenia issues are treated with a new drug called Abilify. You'd have to ask a doc and do some research. I know that she can take it without the dx of schizophrenia (I'm having shudders thinking of how she would react were someone to give her that diagnosis). Anyway, I'm sorry to leave you with no other info than that. I know you live in a difficult state as well, so I'll see if I can come up with any more info for you.

Cora said...

Oh Stacy, I wish there was some knowledge or insight I could offer you. I feel so badly that Paige suffers like this. Just know that she's in our thoughts and prayers. I just HATE the lasting effects of prematurity!

Anonymous said...

If she is hearing comanding voices, then she is WAY past "simple" OCD. OCD is scab picking, excessive handwashing, hyper focusing on the little stuff, etc.. OCD is a monster - and yes, it can control your life. BUT OCD is NOT "compelling thoughts to run into the parking lot and get killed" it is not "compelling thoughts to hurt another person". These are the signs of much deeper, much more complex mental issues.

Anonymous said...

I'm not going to presume to diagnose your child over the internet, but some of what you describe sounds oh-so-familiar (I've had OCD my entire life) and some of it doesn't sound like what I've personally experienced.

Before anyone else jumps on the "hearing voices" part of your story, though, I'd like to point out that how a kid _describes_ obsessive thoughts might not be exactly how an adult would. As a child, would I have described the relentless urge to do something as something "telling me" to? Maybe, I'm not sure. I'm guessing a pediatric psychiatrist would be better trained than us to help tease out exactly what's going on.

My heart aches for both of you.

Flora said...

I've got a kid with OCD, thankfully well treated these days but back when OCD was the monster in our house, we dealt with racing thoughts and obsessions. I would NOT leap to any conclusions about schizophrenia or bipolar in a child because of voices.

FWIW abilify and other atypical antipsychotics did nothing for the OCD but tricyclics work well.

Chris and Vic said...

Stacy, I have 2 suggestions: If you cannot find a mental health professional who is up to the task of treating Paige, in your area/state, ask to go to some well-respected specialist in another state--as for the referral; get Paige's doc to state that it is an urgent need; contact the specialist yourself; get your local news media to make contact, thus embarrassing the people who are foot-dragging on this.

Secondly, find out if there is a clinical trial going on anywhere. Your doc should know or s/he should be able to refer you to such a clinical trial (of experimental meds or treatments for Paige's symptoms). Get in the clinical trial. Get on a plane with Paige and go there, if need be. Say it is urgent---it IS urgent! Tell the parking lot story you just told us here on your blog.

You have to do this. You and Paige and your husband and son have had too much heartbreak. This is too scarey. This is a dangerous situation for all of you.

Chris and Vic

The Preemie Experiment said...

Thank you all.

I honestly do not think she has schizophrenia. "Voices" is what she calls the thoughts that run through her head. She just doesn't seem to be able to understand that they are just that, "thoughts".

How many times have we all had a "thought" that was less than what others may call normal?

My husband is a good example. He yells his thoughts (not when Paige is in the car) at the drivers that he thinks are going too slow. He does not really mean what he says.

I remember one time being in a situation where someone was quite snippy with me. As they turned around they almost bumped into a pole. I was thinking "Oh I wish you would have bumped into that pole."

We all have had those thoughts. But, Paige doesn't understand that having thoughts is normal.

What DOES scare me is that she sometimes acts on those thoughts. She told hubby and I that acting on the thoughts is how she gets them to go away.

The day she ran out into the parking lot she was having those thoughts. I honestly don't believe she wanted to kill herself. She was just trying to make the "thoughts" stop. But, what worries me is that something will happen accidentally.

We have an appointment coming up with her psychologist and will definitely be stressing our concern that therapy is not working.

Chris, you are so right. It is urgent. I wish our mental health care system was better. I thought we had a good thing where we are but now realize that it's time for a huge change. Thanks for the idea of finding a clinical trial. I will be looking into it.

Anonymous said...

I posted many months ago about looking at bipolar with psychotic features. (Could be early onset schizophrenia, but its NOT OCD). I still think you need a new assessment/2nd opinion. A clinical trial would be a mistake at this juncture due to the fact that the focus is on their outcome, not your child's specific needs. Someone else posted find a ped. specialist. Its worth a plane trip at this point.

Jennifer said...


This may be close enough for you to start with:

Jennifer said...

Oops - it got cut off, here's the rest of it:

daedalus2u said...

Reading about how hard a time Paige is having just breaks my heart. I have a thought about it, if trying to "fight it" makes it worse, that sounds to me like low nitric oxide causing "fight or flight" reactions which makes it worse. Meditation does raise NO levels. From how you have discussed Paige, she seems like a very self-aware individual, who (even at her age) could learn how to meditate. I think that would be very good for her. Meditation is the opposite of trying to "fight it".

The Preemie Experiment said...

Update... after seeing both her psychologist (who did a suicide assessment which showed she was not at risk) and her psychiatrist, we have agreed to increase her meds.

Paige talked to both docs and explained that she felt that nothing was working. Both docs feel that it is chemical in nature and not behavioral. She explained that she does not want to die and hates the thoughts.

She identified them as "thoughts" and not voices. She fully understands that they are thoughts from her own mind and not voices planted there (like schizophrenia).

Her psychiatrist told her that he was impressed with her ability to fight for herself with regards to her care. She is so self aware and can easily and accurately tell the docs what she is feeling.

Although the psychiatrist gave us the option of either going up on the Zoloft or adding something like Respidol, we chose to increase the Zoloft. Paige hated Zyprexa, which is in the same class as Respidol. While on Zyprexa, she told the docs "it felt like someone poured cement in my brain". She asked that we not go down that road again. We agreed but both the doc and I told her that we would consider the Respidol if she couldn't resist the dangerous actions she was taking to make her thoughts go away.

She left there with a lot of hope because the psychiatrist told her that about 80% of people find relief once they find the right dose of meds. He was careful to tell her that she will always have the OCD but wanted her to know that she may be able to get to a point that the "thoughts" are not bothersome.

He also told her that there are many others out there like her, have OCD and are intelligent. I think she was afraid that she would wake up one day and not be smart anymore.

All in all, we seem to be back on track. She knows that it will be a rough next few weeks, as she goes up on her Zoloft. She always has behavior issues during the transition time.

But, she is ready to fight again, feeling as empowered as she used to feel!

That's my Paige!!

The Preemie Experiment said...

I forgot to add, thank you to all who commented here and sent private emails.

I truly appreciate the support!!


Flora said...

FWIW neither of my guys have found that risperidone had serious side effects. I hope that if you have to go there, that Paige finds the same thing. We do very small doses and it makes a world of difference.