Smooth Sailing

We’ve managed to string together lots of good days. We went away for a Memorial Day Weekend- camped in upstate NY on a river- A was in all his glory. He stayed at the river, mesmorized, casting and reeling it in for hours. We went on a rafting trip down the Delaware River which was beautiful- but being in a small raft with three kids -and one being A- could stress anyone out! Everytime someone would suggest a rock, an island, a patch of sand to picinic at, A would say, “no.’ Finally H chimed in “You never agree to anything!” She is right. To get A to go along with the program it takes constant manipulation and tricks.

We have restarted the amantadine at a lower dose (50 mgs 3x day.) Seems to be a great balance of controlling the hyperactivity and not messing with his mood (and as an added side effect, it controls bed wetting!) But, toward the end of the trip A is getting irritable again. Dr J says my idea to paly aroudn iwth dosage and times is a good one- “trial and error is how it is done.”

I feel like there are so many horrible scenes that are forever etched in my mind that I am determined to counteract them with happy ones. On our way home, we stop at The (famous) Roscoe Diner for lunch. It is probably the best eating out experience with three children I have ever had. Everyone is smiling, a little dirty from three nights in the woods, sun tanned. A is perfect. Everyone takes a turn playing charades trying to get each other to guess what their favorite part of the trip was. H loved the tent and the hammock. B loved watching A catch a frog and loved the tent too. A loved making H scream when he pretended to push the raft off the shore with just the two of them in it. He seems like a regular big brother.

Today he went to school with no hesitation. He came home and did his homework right away, without me even asking him to. He got more and more irritable as the afternoon wore on though. But, he was out of the house for baseball for most of the early evening so things were pretty good.

I am obsessed with the thought of boarding school. I watch his every move and each interaction and wonder if it is a “good” sign or a sign that he can’t live at home. I picture telling him that he will be going away. I picture visiting him. I picture being home with just D, H and B.

I cannot predict how this will play out. If there were a school within an hour from us I would send him with no hesitation. If there were a day school that could meet his needs, then I would do that instead. But neither is our reality.

I am also concerned about sending him to a “residential treatment center,” vs. a “therapeutic boarding school.” I don’t know if it is my denial that makes me think he is more appropriate for a boarding school, where the focus is on academics and recreation, rather than an RTC where they will monitor his medication and focus on his mental stability.

On Friday we are meeting with an educational consultant who will discuss with us what schools are a good fit, as well as the benefits and drawbacks to sending him now versus when he is older.

I look at him and try to take him all in. I want to make very minute with him right now count. I realize that while I am so preoccupied with doing so, that he is doing pretty well- actually so well. The horrors of a few months ago seem far away- I could almost convince myself they didn’t happen. He is finally, for the most part, stable. I can breath a sigh of relief.

Now I guess it is weighing how much we can take on. A needs constant attention afterschool. Otherwise, left to his own devices, he is either watching tv non stop or annoying his siblings, or creating some sort of mess/experiment. He constantly uses inappropriate language/tone. He gets physical with H and B, but not liek he used to- its a push or a kick. It’s so hard to judge what is “normal” for siblings. I know this isn’t quite normal, but we are getting closer and I’d hate to make the decision to send him to boarding school just when things were getting better.


2 Responses to “Smooth Sailing”

  1. J Says:

    Hi L,

    Sounds like a really lovely weekend was had by all.

    Interestingly, my daughter also stopped the amantadine (because pdoc was concerned could be adding to irritability and confusion) and soon after started Intuniv (for all the adhd symptoms). We’re also considering restarting it now, and I’m particularly interested in your observations since there are few of us out here with kids on this and Intuniv!

    Why did A go off the amantadine? Were there definite pros and cons you feel confident of? On our end, I know for sure that it helped with alertness and to counteract stiffness she was experiencing when on Abilify, but I’m not sure about the other benefits or side effects…

    The school situation is a toughie, do you have a consultant you feel good about? My daughter is at a small girls boarding high school — which was actually her choice because she liked it so much. Any chance your son will feel the same way when he actually goes to visit schools?


  2. Twinkie Says:

    Odd I checked responses — my 9 yr old just got out of a 12 day phosp stay b/c of Amantadine — at least we presume. He was fine on it for about 2 weeks- really great, but then irritability creeped in — we took 48 hours off. Back on, really did not seem to be doing anything — irritability got worse and culminated about 2 months later with a full on melt down – raging and destructive. We are now off it, added in Keppra along with Trileptal, Abilify and Clonidine for sleep. Odd how meds work so well for some kids and completely mess up another — I guess not really odd, just really hard to deal with when it doesn’t work!

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