Woodstone Prairie

We spent most of yesterday up at Children’s Hospital. Yesterday morning was M’s appointment in the Movement Disorders clinic… an appointment I’d been anxiously waiting for. They only have this clinic one half day every other month, so we were lucky to get in as quickly as we did. (It only took about a month…) Neurologists from the University of Colorado Health Sciences Center do the clinic and I was very impressed with our experience there.

 A resident took M’s history and did the initial exam, then Dr Olga came in. She’s Russian, and her last name is long, complicated, full of consonants, and hard to remember (so I’m not even going to try!). She confirmed that yes, M does have tardive dyskinesia. She didn’t hassle me about the meds, which was nice (that’s happened before with other doctors, and I was worried about it happening again yesterday…) and she didn’t talk to me like I was stupid… which was very nice! (We’ve had a couple of not-so-good neurologists, so I guess I wasn’t expecting much… she was a nice surprise.) She also said that M also has some Parkinsonism, which is also a side effect of the meds he’s on.

Dr O would like us to try and stop two of his meds, not just the haldol. I’m pretty sure that stopping both meds would be virtually impossible. I’ve tried before, a couple of times, and each time he becomes so disconnected that it’s a nightmare for all of us… The meds are the only things keeping him connected to reality. She did also say we could increase one of his side effect meds to treat the TD, and suggested another medication for TD that’s available. If neither of those things work, there is a medication, available in Canada and Mexico, but not the U.S., that works well and we could try. If none of those meds work, there is an type of injection that might work, and finally… if all else fails… there is surgery. The surgery would be to implant a “Deep Brain Stimulator” that works like a pacemaker for the brain. It would be finely tuned to work on the portions of his brain where the TD is originating from. This is not something we’re considering now, or in the foreseeable future… But he’s going to have to take antipsychotic medication for the rest of his life, and with TD starting so early it’s nice to know there are some options for him as an adult. Options that might help lessen the disfigurement of TD. Unfortunately she said not to try the branched chain amino acids. She says they haven’t been shown to be effective, and would be risky to M. So… it looks like that door has closed.

 The appointment took a couple of hours, so we headed next to the cafeteria, got some lunch, then looked up a friend who works at Children’s. After visiting for a little bit, I impulsively decided to try and check out the new psych unit. (Children’s recently moved into this completely new, very nice, campus…. this was our first time there.)

 Even a psych unit for children is a locked unit, and confidentiality is protected by not allowing anyone except parent and staff on the unit, or in contact with the kids in any way. So I wasn’t sure how far I’d get in breaching the defenses of the new Behavioral Sciences building.

It was fairly easy to talk my way past the security guard downstairs. I dropped the pdoc’s name and he sent me up to the second (I think) floor… where the day treatment is. When I got to the second floor things got a little more difficult. I dropped the pdoc’s name again and said I wanted to tour the unit. They weren’t impressed with my name-dropping and said that touring the unit wasn’t allowed. I explained that I wanted to see the neuropsychiatric special care unit (for kids with developmental disabilities and mental illness), not the regular psych unit. That got me a little farther. They called upstairs and talked to someone on that unit, after some discussion they escorted us upstairs to the 4th (?) floor where the neuropsychiatric unit is.

Then we waited. M was sprawled out on the floor (we’d been at Children’s for more than 3 hours by then!) and R was curled up in a chair finishing her chips from lunch. The kids from the unit were having lunch in the room next to us and I discretely watched and listened to them and the staff that was with them. Everyone sounded happy, but the room was under control too… no one was running wild. The staff was sitting with the kids, eating together… I liked that too.

 Finally the nurse came out and explained that I couldn’t go any further than I was, for confidentiality reasons. But then she sat with us for 15-20 minutes answering my questions about the unit and even acknowledging the problems the regular psych unit had had during M’s admission. She talked to M and R, and took time to answer all my questions (and listen to M tell her what he’d gotten for Christmas, had for lunch, etc).  This nurse was wonderful, and is in charge of the N-P unit! I was impressed. We talked about what a wonderful doctor Dr B is, about how they would manage M if he were admitted, and she was very reassuring and seemed to really “get it” in terms of complicated kids like M.

If we aren’t able to make the med changes we need to, at home… I think I’d be ok with him being on that unit. Dr B’s main office is right there, on the unit. She would be there for him during the day, and I trust her with him. (She is the medical director for N-P unit. She’s out of town right now… had she been here the whole process of getting upstairs would have been MUCH easier!)  I was assured that none of the stuff that went on last time he was admitted would be taking place (medication errors, safety issues… big men threatening to throw me out!). I was glad I went to see for myself. Although I never could get past the locked doors, I saw (and heard) enough to feel better about taking that step, if need be.

Is anyone still reading? Probably not…. this has gotten very long.

Everything else is going ok. Sweet Pea is starting to settle in, she’s not as cranky with the other dogs and is learning to go up and down the stairs (although it’s still not her favorite thing to do!). R is sleeping better, she likes having Sweet Pea next to her at night…

We are still working on changing M’s meds. It’s slow going and he’s having more symptoms again, unfortunately. I’m not sure how much more we’ll be able to do right away… We are going out of town the end of the month (don’t tell the kids, it’s a secret!) and M has to be stable enough to travel. So I might try just one more small change in the meds and then leave things alone until we get back.

I’m hoping for a quiet day today… We’ve had two days in a row of doctor appointments and I’m tired… I’m ready to put on my “bibs” and stay home today and veg.