So much for my promise to put an update up in April. Where my time goes, I can't say. I don't even know as I write this what to write about. There is no great change in Ryan's day to day world. Some days he does a little better with his behavior, some days worse. He has had some really good days in the Arjo walker utilizing his right leg almost as much as his left, alternating legs instead of us moving his right for him. I don't know but I believe the good days like that are happening more often.

I've decided to be more agressive in weaning him off a couple of the drugs he's been on for a while. At the very least he needs a "holiday" from some of them so I can see if he really needs them. We put him on celexa when he was in Bakersfield. As a clinic they graph and chart outburst occurrences and it appeared at the time that this medication cut down on Ryan's outbursts. In real life, it didn't appear that we had found anything close to a solution but if it made the outbursts less intense or fewer, I went with it. We discontinued it last week and I did see an increase in the level of agitation but I'm waiting to see if Ryan balances out. I am thinking that he has grown accustomed to not having it and I would like him to live with less medication for a while.

I also am discontinuing the zanaflex. We tried that as a muscle relaxer for his arm in conjuction with botox injections he's gotten. I don't think it helped his arm but we thought it may have helped his behavior in the mornings at High Hopes so we stayed with the morning dose. Sometimes a behavior change is for the better and I attribute it to a medication but later the behavior gets bad again and I forget he's still on that medication, which either never was helping or stopped helping. Anyway, I sometimes forget he's taking something that obviously hasn't changed his life for the better significantly and I have to bring myself back to evaluating if it's worth piling up the medication in his system. I would like to get him to a baseline of just taking his anti-seizure medication, keppra, and start all over with new advice. So after he adjusts to no zanaflex I would like to tackle the risperdal. He was on 1 mg both morning and night and now is only on .5 mg. We tried going lower than that a while ago and he really reacted and we needed to give him this half dose to make it possible to get anything out of therapy at all. But I know that there may be a withdrawal period and if we can get through that he'll balance out and we'll have a clean slate.

My desire is to balance him out and find answers that don't involve a lifetime of many medications but I will try any medication that can help him live in community and give it to him as long as he needs it. It's been a trial and error process. Sometimes I wonder if we've tried the right medication but haven't found the right combination or the right doses. It's very confusing, time consuming and expensive. I don't want to tax Ryan's liver and kidneys with toxic side effects of drugs so that's why I just want him free of as much of it as possible for now until we find a new path to try.

In the meantime, I've looked into testosterone therapy and haven't tried it yet but tests are being done to see his hormone levels and to determine whether there is logic in trying this. My reasoning stems from hearing of a friend who suffered a personality change a while back that seriously threatened his marriage. His wife insisted on a medical workup because she knew her husband wasn't like this. His testosterone was very low and getting testosterone shots was the answer for him. He's a happy camper again and they are so glad. She described him as being very angry, irritable and defensive. Started me thinking about Ryan and then I remembered being surprised when he had his testosterone checked late last year and we learned it was on the low end of normal. I had thought his testosterone was going to be sky high because of the way he behaved but I learned from our friends that testosterone being low can also cause angry and agressive behavior. The process of getting anything done in our medical system is frustratingly slow. And I'm not even going through insurance. It's just that doctors are so busy, it takes a really long time to get a phone call returned, a really long time before you can get an appointment, there's been confusion on the follow through, getting blood test results to me and advice on the next step. Right now I'm waiting for something in the mail that will instruct us on a urine sample we must collect and send through the mail to a lab which will check all his hormone levels. The most recent one we have is not as complete as they require and the most complete one we have is a year old and they need it to be current. Argh! These things take so much time and I forget where I am at with all of it. This is just one of the things I'm following up on in hopes of getting answers.

There is also an appointment we've made to get a SPECT scan in Newport Beah at a place called the Amen Clinic. It will get an image of the activity that goes on in Ryan's brain. It won't be ideal because most people are awake and lay still for the 15 minute image to be complete. Because Ryan is not able to control his impulse to move or turn his head if we ask him to stay still, we will have to have him sedated. They assure me that although being awake gives more accurate and complete information, they will still get vital information and be able to analyze the blood flow and metabolism in Ryan's brain and then make recommendations on how to make improvements. Dr. Amen of the Amen clinic has a best selling book called "Change Your Brain, Change Your Life". He's helped lots of people through being able to see the ativity going on in the brain. I don't know how limiting the sedation is but I have to see if there is new information we can gain through this method. I've heard about this place over the years but ruled it out because of Ryan's ,thinking they wouldn't be able to get the image. I finally called and I'm told they can. I'll keep you posted.

Lastly, I'm having a woman come over this week to try something called quantum biofeedback. Don't ask me to explain it. If you understand quantum physics, you can explain it to me. If you don't you wouldn't make sense of what I would write anyway. A lady recommended I give it try. It's non-invasive, developed for the astronauts by NASA,a very advanced computer based technology, is found to help people with a variety of imbalances, it has to do with frequencies and resetting the ones that are out of balance in our bodies so our bodies are free to heal. It's either mystical or so scientific that I can't wrap my head around it but that's what quantum physics is. Too much for my IQ. But I know it can't hurt Ryan, it's affordable, by our standards of what we spend on his care, and she'll come to us. Why not?

I'll end with something really funny Ryan said yesterday. He was fussing at Mike and James as they got him in his seat in the van. We keep things as light as possible while Ryan's doing that and Mike made a joke I didn't hear. I was in the driver's seat and only heard Ryan cussing at them. Then James was laughing and said "That was funny Ryan, wasn't it?" and Ryan, agitated, said "No". James said "Why don't you think that was funny?" and Ryan, still a little agitated but starting to play back with them said "Mike said it. It's an automatic rule." He was dissing Mike! If Mike said it, it's not funny! That time we all laughed, including Ryan.