Wild-Heart.net

For those of you, and I know there are quite a few of you, who end up here after searching for information about parenting a schizoaffective child. I realize you won’t find a whole lot of information here, just as you won’t find a much anywhere on internet. It’s a lonely diagnosis to deal with as a parent. If you are interested in an online forum for parents such as us, please, don’t hesitate to use the contact form. The link is on the right and up top. Let me know. If there is enough interest, I’ll install a private forum for us to have a place to gather and share what information we do know from our children’s doctors and the scant information that is available online. I hope all is well in your lives and that you, your child and families may eventually find peace in dealing with disorder that has such an awesome ability to wreck so much havoc in our lives, especially if there is one or more co-morbid diagnosis involved. Don’t let it all overwhelm you, click the link to the contact form and let’s see what we can do together.

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.

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*

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.

Once I have my wits about me (read: have had enough coffee), I’ll be making a phone call to Baby Boy’s psychiatrist. When we saw him last Friday, one of things we discussed is that he has been rather hyper and unsettled for a couple of months. The doctor suggested we try just the smallest dose possible of Adderall. Just to try and see if it would help. Knowing our family history of being unable to tolerate any form of stimulant, he kept it to the smallest dosage and only Rx’d 3 pills for 3 days. He said we’d know within 24 hrs.

He was right. There is no way in hell I’m going to give him another today or tomorrow or ever again.  He hyper focused on an internet game and all seemed to be okay… until last night. He was awake until 23:00 and then slept until 02:25. We’ve both been awake since then. The only positive thing about this trial was that it killed his relentless appetite. See, most atypical anti psychotics have a  horrid side-effect of causing a voracious appetite, a hunger that seems impossible to satiate.

One more cup of Java and I should be ready to make the call… I think. I could always email but eyes are blurry as hell just typing this.

• My nest is half empty pushing my anxiety level to new levels. Some may think that the years in which I did not have physical custody of my bio-boys was fun and easy. Little do they know me. It left me with an irrational fear of being separated from both my bio-boys and my bonus-boy.
• Baby Boy continues to struggle for stability. Friday I finally had an opportunity to speak with our family psychiatrist about this without him being present. The consensus being, severe early onset of schizoaffective with the major problem being, due to his previous hospitalizations, he tries very hard to maintain a facade of not letting anyone know when he is struggling with the auditory and visual hallucinations resulting in an increase of stress to maintain that control which triggers the mania aspects. The doctor said that he has one of the most severe cases of early onset he has seen yet also shows the most uncanny willpower to mask it and attempt to control it that he has ever seen. We also discussed this being the last time we try a different atypical anti psychotic. If this med combo doesn’t work, it’s time to pull out the “big guns” of the older and more potent schizophrenic medications.
• Had a lumbar MRI six weeks ago which revealed degenerative disc disease with two discs being fused with calcification spreading up the back of the spine and one disc bulging. This explains the lower body neuropathy and neurological symptoms but not the tremors in the upper extremities and decreasing fine motor skills. Waiting for a referral to a neurologist to make sure it’s just the fibromyalgia and not something else co-occurring.
• On Memorial Day I made the best smoked/grilled chicken ever. I also ended up with heat exhaustion from being outside all afternoon in the sun and the heat from the grill.
• Joseph is on vacation this week. The goal is to finish painting the interior of our town-home. The kitchen is half done. I’ll attempt finishing it tomorrow while Joseph works on patching holes throughout the rest of the house. When we’re done, the property manager claims new sub flooring, carpet and linoleum will be soon to follow.
• Father in-law and his significant other will be visiting a week from Sunday. We haven’t seen them since our wedding. It always throws me off guard. Joseph is a carbon copy of his father… only taller. His father also has the most unsettling way of looking a person straight in the eyes in a way that leaves one feeling that your soul has been left completely visible to him… It’s Joseph with age and wisdom. Lord, what a future Joseph and I have if Joseph also gains that much of his father in years to come.
• My last living grandparent is failing. She had the beginning stages of renal failure and was refusing to eat. She seems to have improved a great deal and I’ve been told that she’s came out of the renal failure. Her birthday is Sunday. I have to try and find a good time to call her this week. She keeps asking my parents, “When is my girl going to call me? She’s long overdue to call.” Thing is, having Nate home full time since his last hospitalization has left me with little time for luxuries such as long phone calls. And Grandma always talks with me for a very long time, always at least an hour and a half. Thank the gods for unlimited long distance!
• Boy #1 is now 5′ 9″ and only 15 years old. He just might grow into thoe size 12 feet someday.
• Boy #2 is now 14 and lord help my sanity. His personality is that of a great-uncle that while living, lived to keep drama going in the family. He carries a giant spoon with which to stir the pot at will.
• I’m a horrible mother of sons. While I enjoy them more the older they become, and the teen years aren’t quite as horrible as I had feared, the voice changes that boys go through is akin to nails down a chalkboard. There are days that I dread waking up as I know it will be followed by Boy #2’s forever changing and croaking and screeching voice.
• My mother will be here for my birthday this year. She will be arriving two days prior. She wants to meet Joseph’s family that lives here in GA and has suggested that my birthday should be the day. I’m more inclined to simply leave her to supervise the children and take a night away from home in a local hotel. Alas, between my mother’s wish and those of my neighbors & friends it will likely be that I play hostess for my own backyard birthday party.
• Bonus Boy is insistent that he wants to be here for the entirety of my mother’s visit and has begged Joseph to please ask his mother if he may stay with us the entire 12 days instead of just the 7 in the middle. I won’t hold my breath for that one.
• Sunday, the boys and I watched an older movie that has long been a favorite of Boy #1’s which he hadn’t seen a few years, 8 Seconds, the story of bull rider Lane Frost’s life. Boys #1 & 2 and I followed it with an older Julia Roberts movie, Something To Talk About, simply because, while it’s set in The South, it reminds us so much of life “back home.” Not to mention Robert Duvall reminds us so much of my Dad.
• Boy #2 has enrolled in Time4Learning for the summer with his goal being to complete 7th grade curriculum this summer and then take a grade placement test when school starts back in August. If he completes this goal, having seen Georgia’s mandated curriculum requirements for 8th grade public schools, he just might end up placed in 9th grade… There is that much of a disparity and that much lacking Georgia public school curriculum.
• Boy #1 wants to try to get accepted into National Guard Youth Challenge as soon as he turns 16 in January. I’ve been working with one of their mentoring coordinators to find a qualified mentor here in Macon that is willing to at least meet him so we can get the ball rolling. Last week, I dreamed of his wedding. It was unsettling to say the least but reassuring just the same. He later told me that when he is done with NGYC his goal is to join the Marines. Which made the fact that in the dream he was in full Marine dress uniform for his wedding, a bit more unnerving.
• I wish I was more tolerant of having two teenagers with two different musical preferences in my home. Honestly, I have to hand it to my parents. They rarely complained when my sister had her music blaring from one side of the house and I had mine baring from the other. In their shoes I would have gone completely insane.
• I think I’m finally getting sleepy. I’ll attempt something more interesting and upbeat tomorrow.

Ciao for now.~

There’s a little odd thing that happens when a schizoaffective child is manic while delusional. He will say inappropriate things. Things that will make your jaw hit the floor. Things that no amount of pepper or soap on the tongue or anything else will curb.

Baby Boy has been full of those moments lately. Today’s was one of those days. As soon as Boy #1 (the bipolar one) comes in the door he is accosted bY Baby Boy who just calm as can be, looks right at him and says, “Let me ask you something. Why are you such a bitch?” And as I made a 30 second dash to the hallway and land on my face, Baby Boy had begun dancing circles around Boy #1 singing, “G. is a bitch! G. is a bitch!”

Now Boy #1 is paranoid and takes it all personally and becomes upset. Then Baby Boy whom was put in the corner and fruitlessly had it explained to him that his language and behavior were inappropriate and now he must sit quietly for 5 minutes and do his deep breathing therapy. In which he continued to sing while breathing deeply.

All I can do is sit here and laugh. I’m sure Loki is.

Our local mall is having or recently had a casting call for the producers of that Nanny reality show. I briefly entertained dragging them all down there and if casted they’d get to meet a woman who’s a bigger witch than they could ever imagine me being on a bad day right before that time of the month. But in the end it would probably mentally break the nanny’s mind and I’d end up having to take care of her, too!

And people wonder why I cannot sit through an episode of Malcolm In The Middle.

Baby Boy’s birthday is this Friday. He’s decided he just wants an outdoor party in the evening with grilled cheese, tomato soup & French fries, all cooked on the grill. And he also wants to invite our neighbors whom are friends and another couple and their children whom we are friends with. He promised he wouldn’t turn ugly even though these are people whom he’s taken upon himself to kick out of our home when he’s psychotic and delusional. And he wants cheesecake. With blueberries.

I’m taking bets.

First off, I’d like to say this… The next person who tells me that all that Baby Boy needs is, “a good ass whoopin’” is liable to receive one of their very own.

We took Baby Boy to see his neuro-psychiatrist on Monday. He explained the MRI confusion. Nothing appears to be wrong via the official results. The best guess is that the weakness and Babinski response are the result of nerve damage he’s done to himself when having a fit by jumping, stomping and in general throwing himself into walls and onto the floor.

We do now have a Dx, though. Baby Boy had one of his “episodes” in front of his doctor which led to the Dx of schizoaffective disorder. You can read about that here at the Mayo Clinic’s website. This has lead to a change of medications. He is still taking the Neurontin 3 times a day, but we have increased the Xanax to 4-5 times daily. No more Abilify and no more Geodon. We decided to give one more atypical-antipsychotic a try before moving on to the old standards. This last one we are trying is new, less than a year since it gained FDA approval for treatment of schizophrenic disorders. It’s called Invega. We’re doing a 15 day trial at the lowest dose (3mg) once to twice daily. Yesterday was his first day on it, but also his first day off of the other atypicals so he needed the night-time dose. So far it doesn’t look like he’ll need the night-time dose today.

While it’s a load off knowing that the MRI was nothing to be concerned about in the end. It is still unsettling knowing the Dx and that the outlook of this disorder with early onset isn’t as hopeful as that as early onset bipolar. Especially when it is this severe this early in life. There is a period of mourning that we are going through as parents. Maybe there will be more medical advances before he is an adult. That is what we pray for. Otherwise, it’s just a bit difficult to accept.

We’ve already contacted my attorney to get the ball rolling on a disability claim for Baby Boy. He’s going to need the income to cover things such as respite that insurance doesn’t cover and therapy that the insurance doesn’t cover. Hopefully it will go through without having to go to a hearing, but if we do end up having to go to a hearing, all the better, the administrative law judge will get to experience his disorder first hand because simply discussing it in front of him brings out the rage aspects of the disorder.

I don’t want to talk about this anymore today. It’s very difficult to care for Baby Boy as he tends to be rather verbally and physically abusive when in a rage. When, as a parent, you’ve experienced those things first hand from an actual abusive ex-spouse it’s hard to handle 90% of the time. I’m working on a thicker skin until we can afford to pay someone with psychiatric training to sit with him a couple of times a week just so I can get break now and then.

Unless it’s something major, I doubt that I’ll bring up the nasty bits on here again. I need my escape so pardon me if from here on out it’s posts about sex, paranormal, news, etc… I’m sure that a therapist would call it avoidance, while I’m sure that our neuro-shrink would call it therapy. Yes, that’s how contradictory the actual doctors are from the actual therapists.

Such is life, eh.