Wild-Heart.net

So, how does one celebrate Halloween when taking into consideration the needs of a child with early onset schizoaffective disorder? The difficulty arises because any sort of play involving imagination has the potential to break the barrier in his mind between reality and fantasy and the two become one. So this year, while Boy #1 is helping out at his church’s haunted house, the rest of us will be having our own little at home celebration. Ordering in pizza, having obligatory cupcakes and watching the only Don Knotts movie that I can stand to sit through. The Ghost and Mr. Chicken.

My short list of my biggest pet peeves. In no particular order. Strike that. The first one is my biggest.

• Habitual Liars.
• People who can’t keep their noses out of other people’s business.
• People who gossip.
• People who don’t flush the toilet.
• People who don’t listen to you when conversing with them and then proceed to take some sort of imaginary offense at something you supposedly said but didn’t say because they have zero clue because they weren’t really listening to begin with.
• People who do everything at the last minute.
• People 14 and over who cannot wake up to an alarm clock and get themselves ready for work or school w/out having to be constantly re-woken every 5 minutes until they are out of the door.

I’ll bet you have a list. Wanna share?

Baby Boy was discharged from the hospital on Saturday. The first thing I noticed when we arrived was how disorganized his thoughts and behavior still was. I asked the charge nurse if he had been this way since his admission or if this was just excitement over going home and he said that he had been like that for the duration.

The changes the hospital doctor made to his medication was to taper him off of Xanax during the 5 days that he was there, moved his Abilify to
bedtime instead of morning and made the Seroquel at bedtime permanent as opposed to as needed. He kept him on the 100 mg Lamictal at morning and noon and 200 mg at bedtime. At least he is finally sleeping again and the voices and visions have drastically minimized.

Baby Boy is very slowly starting show some progress at home towards being less violent and and defiant but it is still very obvious that he is cycling frequently through the day and responding to the slightest of stresses with outbursts of rage. The staff at the hospital said they had to frequently redirect his behavior, when we calmly attempt this at home he becomes agitated and aggressive.

Whenever he is in a calm state and I attempt to calmly and quietly work with him on the things we talked about during our family session at the hospital, such as creating a daily schedule that he can see and follow for more structure and practicing going to time-out calmly, and how to ignore his big brothers so that they don’t have the power to trigger him, he becomes violent and it triggers another round of mania. I’ve emailed his regular psychiatrist with all of this information. I think he’s either going through Xanax withdrawal still or Lamictal alone as a mood stabilizer during the day just isn’t going to do the job.

And yet somehow through it all, we’ve been able to complete our homeschool lessons yesterday and today. Granted, it took much longer than it used to but we made it through. Today was better than yesterday which left me with bruised shins and multiple bite bruises received when attempting to stop him from rhythmically beating his head on the wall.

Tonight was actually a rather good night for him, too. The first since he’s been back home. He and Bonus Boy both got in trouble and landed themselves in timeout for cursing out Boy #2 because he was fighting off a migraine and didn’t want to take them for a walk. They didn’t think I was within hearing distance. They were wrong and both were sent to the kitchen table for time-out. Poor child, I think it helped to have a partner in time-out. Something about it made him stop and think about what he had been doing the last three days and we had a good talk when it was over. Now, if he just remembers it in the morning. *sigh*

This one was obviously induced by my hatred of somethings that I have been introduced to since moving to “The South.” I dreamed that Fred Thompson won the GOP nomination and asked Mike Huckabee to be his VP running mate. At which point all across “The South,” people rose their voices in unity to the anthem of “The South’s Gonna Do It Again.”

I didn’t know whether to laugh or cry. It’s a very unsetteling sort of dream to have.

Baby Boy is back in the hospital. This time it was a much less eventful admissions process. His medications stopped working. We had an appointment with the psychiatrist a week ago this past Friday and some adjustments were made to his medications as the visual and auditory hallucinations were occurring again. During that appointment, I mentioned to the doctor the study I had came across that had been done in Finland that shows a link that prenatal fetal hypoxia might somehow trigger the gene for schizophrenoform disorders at an early onset. As an example, Baby Boy has early onset schizoaffective disorder while the usual age of onset for the disorder is either early 20’s or even later in life. The doctor recalled reading about the same study and asked his nurse to pull his MRI films so he could take another look at them and see if there was evidence of prenatal fetal hypoxia damage to his brain suffered at the time that I was pregnant with Baby Boy and nearly miscarried at 4 1/2 months. Sure enough he found. So there is some credence to the studies findings. As I said, he made some adjustments to his medications and we gave it 10 days.

Yesterday, I had to call the doctor and let him know that the changes had not helped Baby Boys symptoms and in fact things were actually becoming worse for him. He asked us to bring him in for an emergency appointment. He tweaked his medications a bit more and added a benzo to use as needed for when he has violent outbursts. He slept through the night for the first time in over two months. We thought perhaps we were going to have the start of a good day for a change. He woke up at his usual 06:00, helped me make oatmeal and biscuits and get Boy #1 motivated and out the door to school. At 07:00 the mood swing started, the violent and delusional boy was in full gear and before I could stop him he had climbed up on Boy #2’s bed and was giving him all he had because he was convinced he had stollen something of his that didn’t even exist in the first place. Okay. Time for the benzo. Thirty minutes after taking it he calmed down, another 15 minutes he was in full paradoxical reaction to the benzo and having to be put into a theraputic restraint.

We finally got him calmed down and called the doctor. He said it was time to call the insurance company and the hospital and get him admitted for a full on medicinal evaluation and changes. The time has come for the big guns aka the old standards. In the last two years he has been tried on nearly every atypical anti psychotic mediciation approved for use in children. They work for up 2 months, sometimes 4 if we’re lucky before his liver learns to metabolize them quickly and they no longer work.

I hate this. Watching my child be wracked and tormented by a neurological mental illness is sometimes more than I can bear. He’s now in the hospital, 2 hours away from home. I just pray that the attending doctor will work closely with his local doctor and that they can quickly find a med combo that will help him.

Prayers, kind thoughts… they’re appreciated. Thanks for reading.

Two months ago, my doctor started me on topamax for seasonal and hormonal mood swings. He mentioned that there is some anecdotal evidence that it helps also to relieve some of the symptoms of fibromyalgia and that it would help with weight loss as a side effect. I didn’t think too much about it. Why? Because there is another side effect of the medication, that of just about everything in life seeming to be dull and not enjoying much of anything, has been kicking my ass in a big way. Everyday of fighting against that side effect, I didn’t even think about getting on the scale. At the time that my doctor Rx’d the medication I had reached a plateau with my weight loss. I just didn’t think about it.

Until last night. I pulled out the scale and dusted it off. Damn. In just two months on that medication I’ve lost 27 lbs.! Yes, I know that’s a lot and I should have noticed it, however I have a bit of body dysmorphic disorder. When I look in the mirror I don’t see what other people see. So it was never obvious to me. Today, I had to prove it to myself. I dug out the leather pants and my old office wear clothing and sure enough they all fit again. I still have a long way to go before I reach my goal. I’ll just be brave enough to admit that the sizes of the clothes that now fit, that had been stashed in the back of my closet for 5 years were all sizes 18 and 16. I’m still a fatty, but there’s a lot less fatty now than there was at the beginning of this year.