Saturday, January 22, 2011

The 5 year battle

I know that many of you are a little upset at me for slapping my kid with medications for her behavior after a short period of time. I just wanted to take this opportunity to say this HAS NOT been a rushed decision. There has been no teacher/school pressure, there has been no pediatrician pressure, no therapists, no principals, no family have pushed us abruptly into this decision. I have been very supported in the dragging of my feet to this point...and have been equally supported that this is the right decision for now...

This has been a long road of about 5 years, where we have been questioning her abrupt choices and impulsive actions.

In the beginning, we chalked it up to her age and immaturity. Which I think was the right thing to do. As the years have passed, we have addressed it in consistency of our reactions, in consequences, and interventions.

(So much so that I witnessed a young extended family member attempt to use it to Elise's disadvantage. He wanted Elise to move so that he could have her spot in front of the TV, and yelled that she hit him. Unfortunately for him, I was spying to make sure that she was behaving as she should. She was across the room from him and had not moved...but he knew that if she hit someone, she would be instantaneously moved and receive consequences. And by extension would leave her spot open for the taking!)

Recently, the consistency of consequences are not keeping her from being abruptly aggressive. So I decided to make diet adjustments hoping to make an impact on her behavior. I have met people that swore by it and I've read that sometimes diet can play a part in ADHD. So I took out most of the refined elements of her diet (her cracker choices, while allowed, were made whole grains only). Fried foods have been completely eliminated and I have pushed as much as I was able in her fruits and vegetables (she still struggles with sensory issues).

Unfortunately, while I am pleased with the over all impact this has made on the entire family's health, it did not make the tiniest dent on her behaviors.

She has hurt other students at school. And wept copiously that they were hurt. While she comprehended that her actions were wrong, she was unable to stop herself! She is big enough and strong enough that I am genuinely concerned that she will truly hurt someone. Even without that though, her peers fear her reactions.

This is the age when ALL children start to really make friends and learn the social cues so very important and integral to their social development. And it is only more so with Elise. She craves the friendships and interactions with friends...

So after 5 full years of attempting as many different intermediary actions as we could pursue, I was driven to accept that we perhaps needed to address this medically. At the very least, we needed to rule out more severe medical issues that this could potentially be, which could include neurological issues, in the form of possibly migraine headaches and mini seizures or others...

If this was a simple case of ADHD, then we could address it now. And perhaps let her off the medications in the summer or holidays or at a later date and see if the simple improvement of her socializations could impact her choices...or just see if she had matured at all...

So this is what we have done. Because of her heart history of repair for congenital defects and the impact that chemo has on the heart, we chose a medication that is not a stimulant. We also got a complete cardiological check-up which also included a 24 hour heart monitor for one day that would give us a base line to check and see if there had been any detrimental effect on her heart at given intervals. There has been a lot of interaction between her cardiologist and neurologist. And I am quite comfortable with the decisions made and the doctors reactions concerning them.

Elise has been on the medication since Wednesday. It has made a mind-numbing impact on her behavior. She was literally impacted on the first day which kind of scared me initially. She was beautifully behaved from 7-11, at which point she crashed into exhaustion...and ended up sleeping for an hour or so. (I decided that we really needed to allow the medication time to adjust in her body, but at no point would this be an acceptable option. And if this [or any] medication took the "Elise" out of Elise, then there would need to be alterations in the drug or dosage.) The next day the wall happened at 12, then 12:30, and every day she perked back up at about 1 and was perfect until bedtime-ish. At which point she was tired and went to bed quickly and restfully (which has always been a battle!). Today, she never even hit the exhaustion wall and was not aggressive or impulsive.

It has been an amazing turn of events for Elise and I am reservedly enthusiastic. I will continue to monitor her progress and its impact on her closely, but I am hopeful about the impact this may make in her life!


  1. I'm proud of you. You are truly a thoughtful and loving mother. ♥

  2. This is such a beautiful post and shows your love for Elise so clearly. ADHD is something that can and should be treated by medication (at least that's what I think) and kids with Down syndrome are just as prone to have this as other kids. I applaud you for all the precautions you are taking to monitor Elise's health and well as trying alternative solutions first. I am so glad she is responding well and I bet her academics as well as social interactions will improve in the near future. Yes, kids with Down syndrome are just like other kids...they share all the dreams and hopes for their future as their peers, and in this case our kids can also share some of the chemical imbalances as their peers, and need medication just like their peers. You go Mama!

  3. So glad to hear that she is responding so well so far. You are so strong and inspiring.