Saturday, April 2, 2011


We went on Friday for our meeting with the developmental pediatrician. By the time I got to the office my nerves were shot. Rain. Crowded city. Hospital location that I HATE (horribly located in the most crowded part of the city). Drove around and around to find the parking for handicapped only to never find it, give up and park in the lot where I scraped the crap out of my car last year.

Thankfully our wait was brief and the doctor was wonderful. She was a teeny, tiny soft spoken asian woman with a very gentle way about her. Abby was immediately at ease. I hadn't brought much since I thought it was to be an hour long appointment. It turned out to be a three hour long assessment so I was vastly unprepared. Abby's behavior was AWFUL but since we were there for her behavior it was okay.

The doctor didn't want to formalize an official diagnosis (a little frustrating) because she was remiss to attribute her behavior, obsessions, hyperactivity and anxiety to something other than RS... at least for now. She said that in the coming years we will probably have to add a behavioral diagnosis.

The obsessions

Abby obsesses over certain objects. She can't function unless certain things are a certain way. She has only had a handful of them in her lifetime but they are severe and persistent. We don't know whether this is a function of family history, the RS or just her personality. The doctor gave us some strategies to work on her obsessions but she confirmed what I knew; obsessions are obsessions and while you can help minimize them you can't eliminate them. It is something we will be battling over time.

The anxiety

Another symptom she exhibits is high levels of anxiety in certain situations. We try to control the anxiety by using Social Stories and giving her a ton of information about her environment. It works some of the time. The doctor felt that, like the obsessions, this is something we can work to minimize but not eliminate.

The hyperactivity and impulsivity

This was of great concern for the doctor. It has begun impeding her learning and will likely get worse. She said that she is displaying early signs of ADHD. She spoke briefly about the future and she felt that medication might be a likelihood in the future. I think she threw it out there to let us start getting our minds around it. In our case we already knew it might be coming. Her behavior gets more and more impulsive and erratic the older she gets.

All of this being said the doctor felt that it was all minor to moderate. She felt that with the strategies in place and perhaps some mild medications in the future it is not going to impede her ability to learn and function academically. It will make things a little harder for her but she's used to overcoming adversity.

For now we are employing the new strategies and going back when we feel it is time to change the plan. I like that the doc was comfortable letting us navigate that part on our own. So, again, we find ourselves in the "wait and see" game. Luckily we've gotten fairly good at that game. :D


  1. what a lot to take in! I'm glad you talked with someone, and you seem to be okay with this for now? When will they add medication? Are you okay with that?
    What kind of obsessions does she have? Alex shows signs of that too.

  2. C - We will talk about the medication next year. I am not a huge fan of medicating such a small child so I am happy to wait as long as possible.

    Abby's obsessions are varied. The largest obsessions she has are with characters on TV or in movies. She went through a Dorothy (wizard of oz) stage. When in an obsession she can't do anything else except that. She will cry if you call her Abby. She acts out parts of the movie over and over and over. And if things are not just right in the play she tantrums pretty severely.

    She also obsess about certain objects. One of her big ones is car seats for babies. We have no idea why. When she sees one she exhibits really bizarre behavior (spitting, crying, kicking, hitting). She also has to repeat things people say to her or instructions she receives.

    She has a very long list of obsessions. I am just thankful to have a doctor working with us on it. None of her doctors wanted to touch it with a ten foot poll. :D