Daily update...

klmno

Active Member
difficult child didn't go to school. I called therapist, who then returned call about 9:15 am. difficult child wouldn't speak with him (he really does like him so this was odd)- difficult child just stayed in bed. He said he had been up with stomach problems during the night. Who knows, it could be true. therapist says he'll see difficult child for a short, 1/2 hour visit on Monday and we'll still keep next Friday's appointment.

I tried to reach the lady about the studies, principal and "team" coordinator again- again, all were out. I left my work number for the lady with the studies. I took un-signed iep back to school cm and emailed to smooth things over a bit. She emailed back and asked about putting difficult child in a math type study hall instead of the study hall for kids with an iep, where they get extra help. I didn't respond to that one. I figure it's going to take a lot more than that to solve this problem and the last thing difficult child needs is less extra help at school.

Anyway, I went to work and left difficult child in bed. My boss wanted to know status of things. He gave the project I'd been working on to someone else so it could get done. I understand, but hated to see that happen. At least I didn't lose my job, yet!!

The lady with the studies called me at work and we discussed difficult child and a little about how the studies work. It might take up to 2 mos of various processes to see if they will take difficult child for an inpatient study. If he gets in, they will start by doing a medication-wash. I told her I'd like to proceed with this process (I can always change my mind!)

The person from the parent advocacy place called. She's going to have someone call me tomorrow who is more familiar with this county "team". She told me to be careful with that, because they are county agency reps of "the system" and depending on who's actually assigned to the team, it might work in our favor, but it might make things worse and work against us. She said the lady who will call tomorrow can give me more detailed info so I can make a more informed decision about whether or not to pursue it. I asked if she knew of any other option I could pursue and she said not one that I would want.

The team coordinator had called home while I was on my way home. difficult child apparently told her I would be home in a couple of hours (???).

So, I got home and difficult child was very emotional- crying because he missed school today but swearing that he'd been up during the night going to the bathroom several times. Then, I saw he'd been on a cleaning spree this afternoon. And, he had been working on a math project that is due next week. It is time consuming but not mentally challenging. He spent a great deal of time on it and cleaning, but no time on make up homework or class work. Then, he went through an hour or so of excessive talking. I'm not sure if he's having rapid cycling between depression and hypomania or if this was just from spending the day by himself without anything else to do or anyone to talk to. (I take the game controllers and computer mouse/keyboard with me in circumstances like this.)

I had taken difficult child off the recent add-on AD and lowered depakote back down to where it was when he seemed at odds last week with all the other medications for physical illness. I think I could add it back, but I'm not sure it's a good idea. We see psychiatrist on Mon afternoon, too. I'm thinking maybe I should just use that appointment to fill him in, since difficult child wasn't even physically ill at our last visit.

I guess this is just a typical day in the life of a difficult child's Mom, huh? LOL!
 

smallworld

Moderator
I live 10 minutes from where the studies are being conducted so if difficult child gets in, you'll have to meet up with me. There's a Children's Inn on the NIH campus where parents can stay.

Even though he's no longer taking the AD, it still could be destabilizing his mood. I agree with leaving things as is until you see the psychiatrist.

Keeping my fingers crossed that you continue to make progress.
 

klmno

Active Member
Thank you so much!! You, and the others on this board, have really been a godsend for both difficult child and myself!!

The next step is for a clinician to call me within the next two weeks. Of course, I'm very concerned- I can't put all my eggs in that basket and wait 2 mos with there being the chance that he won't get in.

I discussed it with him a little. I told him the first thing they'd do is take him off medications to see if he really needs them all. I told him no matter what, it was temporary, if he got in they would not be keeping him a real long period. Also, I'm not abandoning him- I will be there to visit with him. He seems ok with it so far. But, I still wonder if this could do some psychological damage to put him through it.

Also, I have to get the judge and PO to agree-
 

smallworld

Moderator
I don't know if I told you this, but one of the principal researchers at NIMH spoke to my NAMI support group Sunday afternoon about the studies they're doing. Everyone in our group came away impressed with how compassionate and insightful he was. I feel very positive about the work NIMH is doing in the field of pediatric mood disorders.
 

klmno

Active Member
That's good to hear. I have a ton of questions..do they provide adequate counseling services to the kids? Not only to help them understand what's going on so they don't feel like a guinea pig and grow up feeling like something was so wrong with them that they had to be "studied", but do they actually see if psychotherapy instead of so many medications could help?
 
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