Bye-bye Bad Year
cms8741 | Wednesday, June 3, 2009 at 8:39PM One year ago today, on June third at 2:47PM, I received a phone call from my son's therapeutic teacher. She was on speaker phone. In the room with her "on speaker" was our family social worker, the assistant director, and the executive director of the school. She said that as of that moment, my son would be removed "indefinitely" from the school. He was not invited back the next day nor the rest of the week and probably not the next week either. She was not sure when he would be able to come back. In the end, he never did.
Today marks the one year anniversary of the start of the most difficult year I've ever lived. Two weeks after that telephone call that left me mad as hell with the teacher and the school -- how could a therapeutic school do that???? -- my son ended up in partial hospitalization in the psychiatric unit at our local children's hospital.
He left the hospital on a substantial dosage of Concerta and a good dose of Seroquel. Over the course of the following months, we would switch from Concerta to an even higher dose of Ritalin and up the Seroquel to a hefty amount.
In the midst of the medicine increases -- during the fall -- he had his first (and God-willing only) seizure. The seizure came out of the blue, but we had been on notice from his neurologist for a few years that a seizure may occur. (He had an abnormal EEG when he was two.) The subsequent EEG following the seizure was abnormal, but normal for a child his age and especially for a child with PDD-NOS. So we're still "on watch."
We had contemplated adding a mood stabilizer (which is really a low-dose of an anti-seizure medication) prior to his seizure in the fall. So with the seizure, we introduced another medication -- Depakote -- to the ever-increasing mix.
Over the passage of time, things became worse for him and for our family. His temper tantrums were horrific -- to this day, I am left with marks on my skin from his bites and scratches. Our therapists met with us in a room that seemed to shrink as their discussion moved from "what's going on at home" to "we think he needs residential placement."
His therapists and psychiatrist talked about psychosis. These tantrums that were beyond control were not tantrums, they were psychotic breakdowns. We tried new meds -- Clonidine, Chloral Hydrate. All this while we were testing for his IEP.
When he finally started school -- in March of this year -- we thought we were in the clear. He was finally back in a program with a regular schedule. But all the meds on top of starting school (anxiety!), was too much for him.
He wasn't sleeping. We weren't sleeping. He started hallucinating. We took him to the hospital, where they gave him three shots of Haldol in the leg. He was admitted to inpatient psych, where he was clinically delirious from all the medications for the first five days of his stay.
He was having horrible all-body muscle spasms from the Haldol -- a side effect of the medication. To combat the muscle spasms, they gave him Cogentin several times a day. They had neurologists visiting him every few hours, in hopes that the medication didn't permanently damage him in some way. I had two panic attacks -- one of which I was sure I was dying and called the ambulance for myself.
And then things started to get better. Slowly, at the hospital, he was turning around. He was making progress. They "washed out" all his meds, and my boy was back. My happy-go-lucky yet off-the-charts hyper boy was back.
Now he's on a low dose of Adderall and lots of behavior therapy, and that's it. I'm not saying we're leading a blissful existence now. Tonight was family night at his school. We had to leave early because he was having a temper tantrum about playing on the slide. But all-in-all, things are much, much better.
I really hope that with this post and with the anniversary of his being removed from school now behind us, I can finally put that awful chapter of our lives to bed: Bye-bye bad year; hello new one.
Reader Comments (7)
Your year takes my breath away. That you've emerged intact, stronger and your family whole is a testament to love. May the rest of your days continue ever on upward!
What a year! Your tenacity (and that of your son's) through it all is inspiring. Is he back at the same school?
Wow, we have so much in common. I swear that in many kids the antipsychotics create aggression as a side effect... My son is another person than he was when on meds, despite doc's best efforts to tell me that aggressive, self-injurous kid was the real Kid. Our bad years ended a little more than a year ago. Hugs to you, it's like emerging from a hurricane.
E: Thank you for all your support and encouragement, now and since I've known you! You are a great friend.
Mama: He's not back at the same school. The first therapeutic was a private one. Now he's in a public therapeutic school, but in order to get there we had to do IEP testing and the IEP. And before the IEP testing, he did a few months of neuropsych testing. Long road to get to the school where he is, which is an AWESOME school.
Molly_g: Really!??!!? I had no idea that antipsychotics could make kids more aggressive. Wow! That sure explains a lot. I'll have to do more research on that, not like I plan on putting that kid on anymore antipsychotics anytime soon or ever again.
I am wondering about the seizure and PDD-NOS connection. My son takes similar meds to what yours did, and he has also had a few seizures (currently controlled) so I'm wondering about the connection. No one has ever mentioned that before!
Even though I've read every word of the last year, I am still amazed by the hell that has been your year. Amazed that you're still here. He is so lucky to have you. I know that's a PITA to hear, but it's true.
Wow-it still blows my mind all that your little guy and your family have been through. All that in one year.... That reminds me of the quote by Mother Teresa (I think), "God only gives us what we can handle, but I wish He didn't trust me so much." I am so, so thankful to see E's progress and know that he is your happy-go-lucky child once again! Yay! and here's to hope of many lifetimes of blessed, happy memories for your family!!