Sunday, April 10, 2011

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. Click on Medical Series, then ADHD.


Mel said...

Thanks for sharing that. I smiled when I read the part about fish oil, as our eldest is treated to a serving every morning! Although he doesn't have DS, he makes me wonder if he has ADHD sometimes. Well, worry is more like it ;)

Glad to hear the meds are helping Goldie.

Michelle said...

thanks for sharing your journey with the ADHD dx. I've often wondered if Kayla also has ADHD, but then I think, how can you differentiate the behaviors for that from the Ds? She is easily distracted and fidgety, has a short attention span ... but she's never been officially dx with it. I guess she can stay on task, or work on an activity, for more than a few minutes, but it always seems to me like it's only for a few minutes!

Ria said...

Good to know that Goldie isn't experiencing side effects from the meds. Are you still giving her the fish oil now that she's on meds too? Just curious.

jenhiatt said...

I just found this blog after googling DS and ADD. How have things been??

heatherclaridy said...

I am Heather, my son is 5 with DS. I am going to speak with a child psychologist about putting my son on a low dose of meds. He does NOT sit still to watch tv or even play on his tablet, he is always on the go. He will sit for a story however. I only worry because he is a stick child and I don't want him any thinner. I am also hoping this can help him focus more in school and maybe improve his memory or speech. I am also from Pittsburgh and will be moving home soon. I am looking forward to being able to take him to the DS Clinic because this big army base and all its medical personnel see him as his diagnosis and don't want to treat him for various things or even run the blood tests he should be having. I am happy to see I am not the only mom that is grappling with this, because I have tried natural remedies on my daughter with adhd and they didn't work. I also spoke with her child psych about colors preservatives etc and he said it is impossible but he does advocate less sugar.

Brandie said...

They changed Goldie's adhd meds over the summer and the difference has been amazing! It is an extended release formula and she can really focus better now and seems much happier. I have a friend in Pittsburgh whose daughter is a year older than Goldie, but thinner so they did have to use a different medication. Goldie's meds do seem to cut back her appetite a little. I think she takes her child to the DS clinic in Pittsburgh.

Anonymous said...

Thanks for sharing your story. I myself have a daughter with DS and wondered about adhd. Her behaviour has got out of control but we are waiting on a referral to see a consultant about this but the more ive read the more it seems likely adhd is the reason.In every possible symptom I see a link to my daughter. Im hoping im wrong as she has type 1 diabetes aswell. Thanks again for sharing
karen, scotland.