Fun at Disneyland

Fun at Disneyland

Sunday, November 27, 2011

Still trying.....

After 10 days with both the Seroquel and the Risperdal, we're not seeing any improvement. The psychiatrist wants us to stop on of the Ap's - I suggesting stopping the Seroquel since that causes him to overeat and to be sleepy. Happily, she agreed. She wants to double the Risperdal dose and spread that out over the day and also keep going up on the Lamictil (the mood stablizer). I guess that's the plan.

I confess I was hoping for something to work a little faster.

James is also is rare form and is almost more exhausting than Blake. With Blake, it's opposition, negativity, hyperactivity (lots of movement, lots of noise, extreme executive functioning issues, etc.). With James, it's emotional over-reactions, whining, frequent spills, accidents, things that need my interventions, high demand for attention and zero impulse control. 

At least his night terrors are better. I had been giving him Clonidine to help with sleep since the Ritalin was making it hard to settle at night. He was having severe night terrors every single night. I have now switched to a 1/2 a Benedral and that seems to do the trick. Helps him get to sleep and he has not had one night terror on it.

We spent the past 5 days in Las Vegas. We went for Thanksgiving vacation and actually had a nice time. I was very hesitant to go, but told myself that we have to try. We can't always stay home because it's easier. All the kids really enjoyed themselves and mom and dad got to have some fun too!

Thursday, November 17, 2011

Short, but oh so SWEET

The peace lasted for about 2 days. On day 3, Blake went back to pretty much the same as before. Only, he was slightly less aggressive. The hyperactivity, the shrieking/screaming/yelling, ignoring us, ODD symptoms, the constant trying to get a reaction from his siblings...all that came back.

We had to cut the Risperdal dose down from the nausea/vomiting, but a week later, when it was to the same dose as before, we still weren't seeing a difference. The Psychiatrist wanted us to keep it at that level and see if it didn't get better. Another week later and it still had not made a difference. I spoke to the Psychiatrist yesterday, and we discussed adding back the Seroquel to see if the combination was what had worked for him for the 2 days of magic. (He was coming off the Seroquel, which he had been on for 10 days without any improvement in symptoms when we started Risperdal).

So now, he's on 2 Anti-Psychotics which scares the crap out of me. But you know what? Blake says those 2 days were the best days of his life and so we will not stop until he finds that peace again. He started on the Seroquel this morning and the school called by 9:30am. He was exhausted. I went and got him and he has been doing fairly well all day. Just sleepy. I know that side effect will go away in a couple of days.

The battle with the school continues. I am happy to have an advocate, but frustrated at the long waiting period (60 days - we still have 40 more) for the IEP, because Blake really needs certain accommodations NOW. It is making him more frustrated to be held to these standards that make it so that his best is still not good enough. The advocate suggested I write a letter to the school and request an SST to get some help for him now. I started by saying that "I recognize that we have an IEP meeting sometime in the near future. However, as it won't be held until after the first of the year, I am requesting an SST to explore and secure accommodations that Blake very much needs in the interim."

And then I listed our suggestions - Minimal homework tasks, extended time to complete tests/quizzes, shortened work if needed, prompts to refocus, prompts to turn in work, prompts to bring required materials home, movement breaks in class, support during group activities (reminders as to how to work in a collaborative team, how to negotiate, compromise, etc.), Support during placing for group activities (Not placing him with classmates who he doesn't work well with), praise and encouragement, and assistance with organization as needed.

I hope this works. On one hand, I guess I understand the need to demonstrate his deficits and lagging skills in his classwork, but on the other hand, I hate for him to be frustrated and to feel like "Why even bother trying? It won't be good enough.". I feel like the teacher should be prompting him to do the above things, like turn in his work, especially when I have personally gone to her and she knows he needs help with things involving executive functioning. The school he is at is so wonderful in so many other ways. There is such a nice community there, lots of caring parents and passionate staff. We are new to the school, so I don't have a really good feel for everyone. But for now, I want to work with them to get what Blake needs. I don't want to jump ship and start yet another school. The school has great stuff; camp outs, hikes, monthly field trips, conflict resolution circle, a huge environmental program, healthy lunch program, and a TON of hands on projects and collaborative groups (hence those needed accommodations for Blake!).

Just one teacher not willing to go out of her way until a piece of paper tells her she must.