Down Syndrome and ADHD: Our Diagnosis Story

If you would have told me 4 years ago that I would be medicating my child to treat ADHD I would have scoffed and presented you with a bottle of fish oil. Just one of many alternative treatments for attention deficit disorders. I have the Down syndrome to thank for keeping me humble and teaching me that I don't know as much as I'd like to think I do.

I'm sure other parents of children with Down syndrome wonder if their child's attention span is typical of a child with developmental delays or has it gone into the realm of ADD/ADHD. I'm not a medical expert, but I can tell you how we made that determination.

In September (Goldie was 3 1/2) I noticed that I was redirecting her towards acceptable activities every couple of minutes. In addition to the redirection and positive reinforcement, we also started explaining consequences and using time-outs. Goldie responded very well, but it illuminated the fact that the problem was not behavioral. Even when I was sitting on the floor playing with her, she wasn't able to stick with an activity for more than 2 minutes.

My next thought was that the problem was developmental. Was I expecting too much from her? Were her developmental delays responsible for her lack of focus? I did what all mothers do and began comparing her to my other children at that age. My oldest could sit and listen to me read all day at the age of two. Daughter number two couldn't sit through anything longer than a board book until she was 5 and would not watch t.v. until she was 4. Yet, she could still stay on task longer than Goldie. Which brings us to Hank. At 15 months he will sit and play with a toy for 3-10 minutes.

During this time I happened to be talking with a friend who has a daughter with DS that is a year older than Goldie. We both agreed that our children needed help choosing an activity, but in Goldie's case it would only keep her occupied for 2 minutes. Times like these are when I wish I was active in a real life DS support group so that I could have more exposure to other children.

For as long as I can remember, I kept telling myself, that when Goldie's vision and fine motor skills improved she would be able to sit and play. Her vision improved tremendously and she is able to do many things, but her ability to focus on an activity never improved. As she grows we see her making progress in so many areas. Attention has just not been one of them.

After implementing a list of alternative remedies as long as my arm and finding no relief I placed calls to Goldie's pediatrician, the Psychology department and the Down Syndrome Center at Pittsburgh Children's Hospital. The DS center was very helpful. One of the first things they asked was for Goldie's evaluation scores from her IEP. I know most of us don't like these evaluations, but I was glad to see that the scores were useful to ME for once. In most areas Goldie had a 25% or less delay. Except in Attention and Memory where she had a 50% delay.

The final step was having her therapists complete evaluation forms for the Down Syndrome Center. I recieved my own parent survey to fill out. The results? In her doctor's words "She is off the charts for ADHD. I am surprised she is as well behaved as she is. I expected her to be all over the place." (Thanks go to the iPad for keeping Goldie seated. She must have gone through 10 different apps in just as many minutes.) He pointed to the chart and showed me the range in which children with DS normally fall and the range in which Goldie was. We discussed treatment options and possible interactions between Goldie's supplements and medications. Later, I received a large packet in the mail on Down syndrome and ADHD.  What I've read so far has been both disturbing and helpful.

I'm sure your wondering how the things are going with the medication. While I worry tremendously about the long term consequences and side effects, right now things are much better. Goldie has not had any negative side effects from the medication and I feel like it has bought us some time to continue exploring other treatments.
 

If you are looking for more information here is a link to get you started.
http://www.riverbendds.org/index.htm Click on Medical Series, then ADHD.

Down Syndrome, ADHD and Sensory Processing Disorder

For over a month now I've had a half finished blog post titled "Down syndrome and ADHD" waiting for me to find the time to complete. Goldie was diagnosed with ADHD last month. I pursued the diagnosis for her so she would have access to treatments that I can't provide on my own.

Until recently, Goldie didn't have a consistent OT. I've inquired to her current and old OT about trying Therapeutic Listening or a weighted vest to help with her lack of focus and attention. I was beginning to think they were blowing me off, but I politely persisted.

Goldie's OT provided me with a sensory inventory to complete. I knew she would have differences in a couple areas, but the inventory revealed her sensory needs are much greater than we had realized. Her OT and Speech Therapist admitted that they had never observed behaviors that would indicate Goldie has a sensory processing disorder. We had a long and productive conversation where I was able to give the Occupational Therapist insight into her behaviors at home. Together we came up with some ideas to help Goldie.

Initially, it will mean more work on my part. My thoughts are that it can't be worse than redirecting her every two minutes! We already do a lot of sensory activities with Goldie like swinging and sensory tubs (probably why her behaviors weren't more obvious). Overall, I am relieved to know that this isn't just a "DS thing" and there is more that we can do for her. So when I'm not brushing, compressing joints and trying to keep the headphones on, I'll be working on some posts about these new diagnosis. If any of these are things you are already dealing with, I would love to know your favorite resources, books, etc...