Decisions Made

Music Man is now on medication.  Yup.  I said I wouldn't do it unless I felt it was necessary.  I put up every possible barrier I could think of to make sure I didn't have to do something to change my children.  But now, both of my twins are medicated.

Ballerina has been on Focalin for some time now.  To say that it solves all of her problems wouldn't be accurate.  But it does attenuate so many of her impulses which allows her to focus and learn.  We recently increased her Focalin dose (doubling it, in effect, but that's only because you can only increase it by 5mg increments and she was only receiving 5mg/day).  I really don't directly see the effect of the Focalin.  She only receives it when she has school (benefit of a steroid -- when it's in her system, it works but you don't need to maintain a level so she can have "time off").  But her teacher is telling me that she is noticing more attentive behavior, especially while on the carpet.  She comes out of school generally happy and I see the progress in the work she brings home as well as the way she handles her homework.  I'm still walking her through it all, but I'm supposed to be.  She's getting the idea as the year has been progressing.

Music Man on the other hand, didn't have an ADHD diagnosis.  Until this year, I really wasn't hearing much about his attention problems.  But this school year, I am daily getting reports that he is "out of location".  He is requiring almost one-on-one in order to get him to complete a task.  He's become more and more self-willed with more and more anxieties that have been coming to light.  When we saw the developmental specialist in October, she had brought up the possibility of prescribing Strattera, and non-steroid ADHD medication that also seems to help children with anxieties.  But at the time, I didn't think this was necessary.  I didn't think that his attention issues were that severe, and his anxieties were more of a concern but I didn't want to give him an ADHD medication if this wasn't much of a concern. I didn't realize what was going on.

For the last 4 months, I've been watching my son struggle.  I've been seeing him perseverate on the things that cause him anxiety (specifically, elevators).  I've been seeing the reports coming home from school every day that elopement has become an issue once again (this resolved before the winter).  I'm watching him struggle every day.  It was so bad one day about a month ago.....I was in the school doing some volunteer work (I'm there every Tuesday) and I hear him screaming.  His screaming is so loud that he literally empties the office because they are looking to see what is wrong with this child.  The problem was that he had to walk past an elevator to get from his classroom to the music classroom (and he has to pass this elevator several times a week to get to specials).  After trying for several minutes, they actually took him outside to get between the two doors so they could avoid having him walk past the elevator.  They did make him successfully walk past the elevator to return to the classroom and it was a one-time thing (once they knew the severity of the problem, they started implementing strategies), but this was a slap in the face to me, showing me how bad things really are.  It was this that made me realize that we need to do something.

So, on Tuesday evening, Music Man began Strattera.  We have now increased the dose from 10 to 18 mg as we are stepping our way up to 40mg.  We were told that we shouldn't see much of an effect for 4-6 weeks.  Every morning, Music Man has a couple of spoonfuls of applesauce.  What he doesn't know is that inside the applesauce is Strattera powder that I get from opening the capsules.  His teacher told me late last week that he seemed to be a little more manageable in terms of his anxieties, but they weren't seeing any changes with the attention issues.  But his teacher is familiar with Strattera and that it takes time to reach full effectiveness.

So, now we have 2 children on very different medication.  One of the things that I'm terrified of is mixing up which child gets which medication.  They take it at the same time, but in very different ways.  And, even opened up, there is an appearance difference between the two.  Ballerina has her Focalin mixed with chocolate pudding.  Music Man has his mixed with applesauce.  Like I said....very different.  But they get their medicine early in the day, before I've had anything to ensure I'm awake (i.e. coffee).  Hopefully that will never happen.

Living life through chemistry.....that's us!

Dancing and Listening

I know....Saturday morning and I'm writing a blog post. I'm sitting here, between activities in our ridiculously insane Saturday, but I want to write this while I'm thinking of it. What better way to take advantage of a "quiet" 35 minutes, right?

Our Saturdays typically begin with Rachel's dance class (well, at least that's our first "activity"). I have wanted to experiment with Rachel and her Focalin dose for a while -- I wanted to see if she could handle the dance class without the ADHD medication. One of the benefits of Focalin is that it's so short-acting that you can take days off without any real consequences. And that's a good thing because we haven't had any for the last few days. Yup.....we ran out and even though I called the doctor's office to get a refill, because it's a controlled substance, it cannot be called into the pharmacy, but mailed to us so we have the original prescription. And the doctor's office is far enough away and my week was crazy enough that I decided to ask them to mail them rather than driving into Fairfax, VA to pick it up. I think I now regret that decision as it has been a week and still no prescription (and they can't deliver it through another Children's Hospital Outpatient Clinic -- it has to be where this doctor resides).

So, time to take advantage of the opportunity......can Rachel handle her dance class without her dose of Focalin? The only way we are going to know is to try. So, let's give it a try!

When we arrived , she was far more animated than usual when we arrive at class. She's talking up a storm, surprising her teacher and the mother of the other little girl in the class (she's normally very sedate, thanks to the effects of the Focalin). I let the instructor know that we are without the medicine this morning and that I'm really not too sure what to expect. Everyone took a deep breath and the class began.

I could tell immediately that this class was going to be different for Rachel. First, she didn't seem to want to go into her assigned studio, but to the one across the hall. But that was corrected quickly. Now, normally I don't hear her at all. Today, she was running around and talking quite loudly. I poked my head in and she was having a very hard time sitting in her hoop (her guaranteed space -- the other little girl is supposed to allow her this space). She was fascinated by the mirror and kept running over to it. But they were able to get through warm-up and stretching time. I just stuck around trying to blend into the background (unsuccessfully of course). Onto ballet. Rachel was doing a little better. She liked to point her toes. But she was clearly distracted. After a few minutes, the decision was made to abandon formal teaching and they played through an obstacle course (jumping, balancing, crawling through a tunnel and "log roll" along a mat). This was better for her. It was clearly a "game" which held her interest a little better. As long as she wasn't waiting. When she was waiting, she found a corner in the mirror with the added reflections which she just LOVED!!!!!!

When they switched to taps, once again instruction began. But this was more interesting. She really was trying. I could see the effort. But, again, she was distracted. She would start doing what was expected of her and then would either forget what that was or would switch her attention to something else. But she was still having fun.



I would call this experiment a "fail". However, it wasn't a "colossal FAIL". But she clearly isn't ready right now to be expected to perform in any classroom setting with any focus without the aid of medication. I'm glad that things worked out well and that there were no serious consequences -- she still had fun and she still learned. She didn't cause or create havoc. She didn't run off. But she just wasn't receptive to learning the way she needs to be.

The only way we were going to know if this was a good idea was to try. So, today we tried. And now I know. She still needs this. We'll probably try again in 6 months or so. I'm glad we tried, and I'm satisfied with the answer.

Chemistry Experiment

Yup.....I'm engaged in a chemistry experiment. And the subject.....my daughter, Rachel. We started pumping her small body with (very very VERY) small amounts of medication to help her master her impulses.

Specifically, we started giving her a drug called Focalin. It is very similar to the more commonly known drug, Ritilin, but it's supposed to have eliminated one of the key side effects (its effect on appetite). Otherwise, the mechanism by which it works is, in theory, the same. On Friday, I met with the developmental pediatrician and we discussed a few medication options. In my opinion, this was the best. It's a short-acting stimulant that, once it's out of her system, it's pretty much gone. If we don't like what we see, just deal with it for about 4 hours and then we're back to where we started. But because it is so short-acting, she will likely need more than one dose to get her through her day at school, or we may have to time things differently.

Before beginning treatment, the doctor, Kevin and I sat down and developed a short list of measurable goals to track for success or for failure. They really are quite simple and reasonable. (1) She needs to be able to sit in her seat for mealtimes (target 15 minutes), (2) She needs to be able to follow the group in her weekly gym class (class lasts for an hour) without aimless wandering, (3) She needs to be able to listen to books before bedtime, and (4) We would really like to see some growth in the joint attention skills (more eye contact, in particular). We are watching each of these 4 things and rating them with each dose. This way, when I talk to the doctor in a couple of weeks, we'll have a reasonable measure of how successful this medication has been and when we will have a better understanding of when we have reached our target dose.

So, that being said, we gave her the first dose yesterday morning. We cut it to the appropriate size, hid it in a blueberry muffin, made sure she ingested it and watched. We knew it would take approximately 30 minutes to take effect and that the effects would last about 4 hours. Well, we didn't have to remind her as often to keep her chair still. We didn't need to remind her to keep her hands clear of herself as we normally do. But we really weren't seeing much else. I took her to gym class and there really was no improvement there, but the class was shortly before the medication would wear off, so we don't know if that was what was really going on. Today, the results are similar. Tomorrow we increase the dose.

So yes, my daughter has become a chemistry experiment. But it's a controlled one and it will hopefully help her in ways that we can barely imagine. We've seen so much improvement in her ability to function over the last 2 years. We just need to make sure that we give her all the tools possible to keep that growth active without causing other forms of harm.

Hopefully, we have found our answer, once we hone in the details a bit more. Time will tell.