Sunday, March 28, 2010

Korbin Wants To Go To School!?!

I'm really not sure what's happening in Korbin's precious little head, but he's slept without a pull up for the last 3 nights and stayed dry. Being that he didn't potty train until he was 6, I really wasn't pushing the night time thing. I think his motivator was keeping me from washing his favorite shorts, but I'll take it. :)

Today is the last week of spring break. I've been trying to get the paperwork through to get Korbin in the residential program he's been needing for over a year, but it's at a stall. While we were at the hospital visiting Aidan this afternoon I reminded Korbin that he could just solve this whole problem by getting his uniform on tomorrow morning and going to school. He totally agreed! Holy poop on a stick! How did I just make that click in his head? Really? Oh yeah, keep the emotion out of it or he'll change his mind. Suck it up Anna, we've got work to do.

Korbin has stuck with his decision to go back to school instead of to residential. I'm hopeful, but I can't hold my breath. He's had moments like this before, but I can't remember the last time he was so rational. Tomorrow morning he wants me to wake him at 6:30am (yes, he's in control). I have his lunch packed to his specs and we will go to school early enough that he can eat his breakfast with his friends. He wants me to stay with him, but I'll leave as soon as he's adjusted a little. I just fear the principal telling us to leave until his IEP is changed. HaHaHa! I can't imagine what the ladies at the district office would say to him if he even tried to deny Korbin access to the classroom. It's been over a year, but we might be on our way back.

Friday, March 19, 2010

Korbin's Weekend Adventure

Last Friday night Korbin went over the edge again. He was so far into his delusional world that he was screaming at me that he wanted me to take him to a new family. It's not a new delusion, but when he starts thinking about it there's no changing his mind. Apparently there's another family out there who will allow Korbin to beat on them as much as he wants, won't expect him to take care of basic hygene, and doesn't care about his education. His new family will let him eat marshmallows and potato chips all day and never bring up the subject of vegetables. I tried to explain that we are his family and we love him very much, but it only made matters worse. He kept coming at me with both fists pounding at my head yelling, "Take me to the hospital so they can find me a new family!" Jason had already left for work and I knew there was no way I could restrain Korbin for mine and his safety if this escalated any further, so I offered to drive him to the hospital. He instantly stopped beating me and ran to pack his bag.

He calmly rode in the van and did fairly well while I was talking with the intake nurse. When he started ranting at me about how he was never coming back to live with me I simply stated that we are his family and always will be. My son launched at me like a lion on prey. His claws ripped the skin on my arm as I dodged his sharp teeth. My diet coke/life blood went flying and covered the desk. I grabbed my purse and went for the office door as the nurse came back to help. Korbin was ready to go the ward so he could begin his quest for the new fantasy family, but the nurse wouldn't take him out of the room until he calmed down. Long-er story short, chairs flew, a checkers game was shreded, and Korbin was taken to the back by two very large men.

By the time I left it was time to talk to Aidan who is still on the residential side of the same hospital. I swallowed my emotions and talked Aidan through his. He could hear his brothers screams from the next hall. He didn't want Korbin to have to be there, but understood that they could help Korbin the way they've helped him. I drove in the dark through my tears back home, alone... for the first time since last March.

Korbin was sent home that Monday with his Abilify doubled, another referal for residential time, and the new diagnoses of Mood Disorder NOS & Psychotic Disorder NOS. NOS stands for Not Otherwise Specified. To us it's come to mean that the doctor doesn't have the balls to label someone with the diagnosis that we all know is coming. Aidan was recently labeled with schizoaffective disorder just like Jason, my hubby. Schizoaffective is a label that combines schizophrenia and bipolar symptoms. Either way diagnostic labels and labels in clothing are both pretty much meaningless until it comes to billing. We treat the symptoms while trying to find the cause and hope for the best.

Every single residential facility in this state has refused to work with Korbin because of his severe and complex issues. I can't place my son in a facility out of state and just leave him there until I can get back for a visit. It's just not in me. We've been considering leaving the only state we've ever known, our family, and friends just to get help. I begged the doctor at the hospital helping Aidan to give Korbin another chance. They sent Korbin home after 7 days saying they couldn't help him back in September, but with the breakthrough of the gluten and casein free diet I think they may be able to reach him. He's agreed to try, no promises.

If this trip to residential doesn't work we'll run out of options here. I'm unable to get him to take care of even basic hygene at home, keep him from hurting me when he's out of control, or teach him any academics... at least I've proven to myself that I can't do it alone. I can't get any more help for him outpatient, so we're stuck with having to go inpatient. We may have to pack up and move. I don't want to, but we just don't have many choices left. Do we stand our ground to be near our family and the only home we've ever known? Do we leave everything behind in hopes that the grass is greener? Is there an option that we haven't found yet that could be far better for the boys? Then if we are going to run to greener grass, where do we find the greenest grass we can afford?

For today I'm going to carry the letter from the outpatient psychiatrist to the hospital. Somewhere along the way we'll know, at least I hope we will.

Tuesday, March 9, 2010

Gluten & Casein Free Diet

Aidan (13) started showing symptoms of autism around his 2nd birthday. Korbin (9) didn't have eye contact or like to be held from birth. Here's a good site to learn more about autism symptoms We can't blame ourselves guessing at things we did while pregnant or their lack of veggies when they were toddlers, etc. It's just wasted energy. I've had to learn to deal with each day the best I can, with the tools I have. There's no harm in looking for more tools to help tomorrow. :)

I tried the diet for the boys when they were 7 and 3. Before we even started I researched for about 4 months. After having the boys gluten and casein free for 3 months and not seeing ANY difference we tested them with a huge cheese pizza. They ate themselves miserable and still there was no change in behavior. I found out later that their schools were allowing them to eat anything they wanted. Korbin even had an aide who felt sorry for him being restricted and brought extra food in her lunch to share with him.

We went back to gluten and casein free this past October and went soy free in November. Korbin has had a faster improvement than Aidan, but that's likely due to the years of damage to his intestines. We just tried Korbin back on soy without seeing a difference so we're allowing him soy again. Korbin's reaction to tomatoes is aggressive rage. It's like a sudden break from reality where he attacks anyone around him and destroys property until he runs out of energy and finally rocks himself to sleep. It takes 2-3 days for him to get over the nasty mood that's leftover. He actually fears that someone will put ketchup on his food. Aidan offered him ketchup for fries a few weeks after I figured out the tomato issue (thanks to a food & behavior dairy). Korbin yelled at Aidan "NO! It hurts my brain!" Korbin leaned over to me and said "I feel so much better with no ketchup in my head." Before October Korbin couldn't even put together such a complex idea into words.

In the world of autism there is no "gold standard" treatment like there is for schizophrenia. We know that antipsychotics help almost everyone with SZ. With autism parents are trying anything and everything they can to help their kids, with or without a doctor's blessing. The book Unraveling the Mystery of Autism and Pervasive Developmental Disorder by Karyn Seroussi explains more about where the diet came about and why it and ABA therapy is the closest thing autism-land has to a gold standard. The best of the best researchers have come together and written the Defeat Autism Now protocol. I won't get into the details of it, but the doctors who are trained in it are getting great results.

I'm not going to say that removing some foods from my sons' diets have "cured" them. Within 2 weeks of removing gluten and casein from Korbin's diet we were astonished by his increased socialization and pretend play, which was totally new. Many kids have the same morphine-like peptide reaction to soy as they do to casein and gluten so we did a trial removal of it for 3 months. I kept a daily diary of every food and drink they had and a sentence or two about their behaviors. It was easy to spot that the days Korbin had tomato product (ketchup addict) he had a very aggressive rage and stayed in a foul mood for days. As soon as we removed it he was happier and had far fewer rages. He's also allergic to tree nuts, so we don't use nut milks or nuts in cooking (like in many fake cheeses)

Aidan is still gluten, casein, and soy free. While he's inpatient I can't make any changes. He's had bowel issues all of his life so seeing an improvement in Aidan wasn't likely until we got thing "moving along". It's taken prescription medication to help ease his backup issues. Now that his GI system is happy, he's becoming more happy. At this point I'm just trusting that the diet changes are making a difference for him. Being diagnosed with schizoaffective disorder at 13 means we have a long road ahead. Even if it's just a small improvement, it's enough to justify the work.

Yes, we miss pizza delivery. I've learned to cook all over again. I make a great allergen free crust. Basil pesto, alfredo-wanna be, and many other sauces replace our lack of tomatoes. There are are loads of fake cheeses that become acceptable once you've been without long enough. :)

I doubt this is THE answer, but it does help many people. My boys went through the winter without any asthma trouble. They are still on their daily medications for asthma and allergies, but the rescue inhalers have stayed in the drawer and I can't remember a winter that didn't require prednisone. As a mom I can only use this tool that I have today to do the best I can for my sons. I'll keep looking for other tools that might help in the future. We can only do the best we can with what we have and hope that it helps their tomorrows.

Sunday, March 7, 2010

Insanity Update

Aidan is doing SO well in residential that I'm shocked every weekend when I get to see him. He's lost 18 lb in the last month, which was much needed. He's happy, has energy, and far more social and optimistic than I've ever seen him. He will be there another 2-3 months. I don't like him being away from home, but I can't deny that it is really making a difference that seems to be rocking him to his core. :)

Korbin is my 9 year old who has autism and tourette's, but seems to be slipping over to schizophrenia too. He's totally delusional. This last week he's attacked me several times. We've increased his meds. Depakote went from 250mg at night to 250mg/ 2x daily. We also took his Abilify from 2.5mg at night to 5mg at night. I tried to get him in acute for an eval and medication stabilization, but he's not trying to "kill" me, so it's not an emergency in their eyes.

We've started the paperwork to get Korbin in the residential program at another local kids' psych hospital. The place that is helping Aidan so much wasn't able to do anything for Korbin back in September. This new place seems to have more experience with lower functioning kids with autism and schizophrenia. The school district is thrilled b/c he hasn't been inside a classroom since last March and refuses to to work with the homebound teacher.

I'm just kind of in a panic about both of my sons being away from home. I've been 100% mom 24/7 for 2 very challenging boys for 9 and 13 years. I know I should take the time to relax and take care of me, but the only thing I can really think of doing is curling up in my bed and crying until one of them is back home again so I have a reason to suck it up and go on. Part of me is screaming "Holy cow! You've become codependent on your screwy kids!" The other part of my feels I'm totally justified in being deeply depressed.

Well, I've got 2-4 weeks before the paperwork is done and a bed is available for Korbin. Until then I have to keep him, me, and the house safe from his rage. Maybe by then I can talk myself into a facial or something. I've just done this for so long I don't know life without insanity.

Tuesday, March 2, 2010

A Stranger in the Family

Well, really Aidan spent 10 days in acute care first, but he's been away from home for a month now. Somehow time is making abnormal seem horribly normal. Yesterday was Aidan's first pass to leave for a few hours. It seemed strange to have him with us again. My own son felt like a stranger. By the end of the day he almost looked like a stranger too.

Aidan needed a hair cut before he went inpatient. His blond curls had grown into an unmanageable frizz, so our first stop was for a haircut. The stylist took him from a fluffy 'fro to clean cut and polished. Then he needed shoes. He's 13 years old in a 12 men's. OUCH! By the time we got him to his favorite restaurant he seemed completely different. He's no longer hallucinating or delusional so Aidan was totally "with us". Aside from a few trips into Korbin's fantasy world, we had normal dinner conversation. It's been so long!

In the last month Aidan's medications have brought his symptoms under control. He's lost 16 lbs. thanks to the food restrictions at the hospital and is standing taller with his new found confidence. His clothes hang differently and his new, HUGE shoes look very adult. In the last month my wild boy who had lost the will to live has become a happy, healthier, more stable young man. I'm amazed by and proud of this strange new person. I can't wait to get to know him all over again.

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