There are LOTS of kids these days with Autism. There are a lot of parents out there who are feeling lost and not quite sure what to do. We were, are, and will be some of those parents. Although we started out with a "she's fine, she doesn't need any treatment" attitude, we found that over time her progress at school and at home was declining, then fell into a rapid decline in 2007. We needed help.
When I meet a family with a kid like Ellie, I invariably ask the parents what they may or may not be doing to help their child re-connect with the world. I thought I'd give a brief history of what we've tried with Ellie, in the hope it may be helpful to someone out there in cyberspace.
Ellie had 15 hours a week of ABA (Applied Behavioral Analysis) therapy for about three years. In the end, it helped her recognize that there are words you could use to call things around you. Not that it made her actually USE these words, but it helped her to recognize that they existed and that she could use them if she wanted to. It also made us understand that our Ellie is, in essence, unbribable. If she doesn't want to do something, there isn't a treat or an activity out there in the universe that can convince Ellie to do it. Since ABA is based on children being motivated through bribes, it was less than successful for her.
Biomedical Intervention/ D.A.N. Protocol(2007)
After some reading (a lot of reading) I came to believe that Ellie's condition could be the result of heavy metal toxicity. I recognize that this is a very contriversial topic, but I still believe that our environment is increasingly toxic, and that mercury in vaccines at the time Ellie was a baby certainly didn't help her get a good and healthy start on life.
We contacted a D.A.N. doctor in Los Altos, California, and after some testing found that Ellie indeed had elevated amounts of heavy metals in her system. We started a regime of vitamin and mineral supplements, a gluten and casein free diet, and chelation treatments. After a VERY long 18 months (biomedical intervention is no picnic, people) and multiple tests, we found that for some reason we couldn't get the metals to release from her system, and we agreed to call it quits.
Some people might call this a vindication for people out there who think biomedical interventions are junk science. Others might say if we had more research on these treatments we could make them more effective. After 18 months of labor-intensive treatment, my only response was, "Didn't work. Move on."
We moved on to:
Pharmaceutical Intervention (2008-present)
For her, not us, though Lord knows we could have used them at this point. Ellie was becoming a most unhappy girl. She had come to a standstill at school, and was using all of us as scratching posts. We were becoming shut-ins, as we couldn't take her anywhere without a meltdown of nuclear proportions. Things that once had been her favorite no longer held interest for her. We were WORRIED. Worried and scratched-up.
Providence brought a new doctor to the area who specialized in Pediatric Neurology. He had 20 years of experience with autistic kids. We figured it would be worth our while to check him out.
He met Ellie, asked loads of questions about her, and pointed out that she might have an underlying mood disorder in conjunction with her autism. "Woo-hoo!" we thought. "A mood disorder AND autism!" After much soul-searching, we decided to try some of the meds we swore we'd never, ever put her on. We started with an atypical anti-psychotic (Abilify), which helped her calm down some and improved her focus and communication. We continued to have problems with phobias (she refused to use the bathroom for awhile, which led to obvious and very messy problems), so the doc suggested an anti-anxiety medication. We tried just a touch of Lexipro, which so far has helped. Ellie is much more connected to us, and the rages have stopped, for the most part. She still doesn't like kids, however, which is a problem, since she's a kid and has to go to school with other kids. All in all, we can't complain! It's been a long road, and I'm sure we'll continue to have a long road ahead of us. I'm really looking forward to puberty, for instance.
So there you have it. It wasn't very brief, but it's a goal I rarely achieve. Apologies!
April 18, 2008:
We've been hard at work trying to find a medication that suits Ellie and helps her function better at home and at school. We have not been very successful. We've tried five different medications for Ellie, and all have failed to improve her mood and/or her extreme sensory sensitivities. Even more frustrating, it seems that every time there is a "small risk "of an adversive side effect, Ellie is sure to have this side effect to the medication. I'd like to list her medication, their purpose, and any side effects Ellie had for the record.
Namenda - an alzheimer's medication used to increase cognitive function in autisic children
There was a small risk that Namenda would cause irratibility and agitation. We tried this med on two separated occasions; both times it made her really, really unhappy. It was hard for us to believe, given that she was extremely unhappy before we even began the medication.
Abilify - an atypical antipsychotic used to improve mood and sensitivity issues
Abilify is the most "weight neutral" of all the atypical antispychotics. That means it doesn't usually cause weight gains. Ellie gained 21 pounds in six months on this medication. Given that she was seven at the time, that's a LOT of weight gain. She was absolutely starving every minute of the day. Plus the medication did nothing for her mood. It seemed to work for a short while, but over time we saw no real improvement.
Lexapro - an anti-anxieity drug used to control Ellie's extreme anxiety
Ellie was on what I believe was a small dose of Lexapro in conjunction with the Abilify. When we took her off the Abilify she went off the Lexapro as well. I'd like to return at some point to try Lexapro or another anti-anxiety medicaiton in the future, as I believe anxiety is one of Ellie's core problems.
Lamictal - an anti-seizure medication often used to control mood
We were told to watch for a rash that looks like a sunburn, which could be a sign of a rare but dangerous side effect. While she was on a lower dose of this med we didn't see any rashes (nor did we see any improvement), but when we raised the dose, sure enough we started to see a rash that made me extremely nervous. As we were seeing no improvement on this medication anyway, we decided to take her off it.
Clonodine - a blood pressure medication used to treat impulsivity
We noticed immediately that Ellie's echolalia (she repeats things she hears from the TV or computer, over and over again) got really out of control. She went from being unable to tolerate children's voices to being unable to tolerate ANY voices or even sounds, from anyone in the room. Since we were at the end of our rope at this point, we were frequently sighing in exasperation. Ellie would begin to sigh loudly over and over again, in annoyance that we were making noise in her hearing.
We had a long talk and decided that after a year of this, Ellie needs a "medication vacation". We want to give her the chance to clear everything out of her system completely and see where we stand with Ellie's unmedicated behavior before we more on to a new medication. We're all very worn out. We're hoping for better luck in the future.
November 2, 2008:
Well, folks, we have a new best friend and its name is Lorazapam. It's an anti-anxiety drug that has been helping Ellie to have a pretty darn good year compared to last. Now, some of you may be asking, "Why the frik didn't the neurologist suggest this, the most obvious medication for a girl suffering from severe anxiety FIRST, instead of last?" It's an excellent question, really, and I put it to the fine doctor myself.
He did manage to give a satisfactory answer, so I put away the egg that I was aiming at him. He said that normally, autistic kids do better on the medications he tried first, antipsychotics. They tend not to do as well on anti-anxiety meds, so he was steering clear of them. He was just doing what made sense based on his considerable experience.
Which leads me to a point I've been mulling over for some time now. This medication goof is just another example of how Ellie doesn't seem to fit any of the molds that we have for autistic kids. I'm aware that autism manifests itself in a variety of ways, but I'm convinced that autism can be broken down into a number of subsets, and I really am beginning to believe that Ellie is a subset all unto herself. I'll keep pondering and mulling and let you know what I come up with. It may be simply that we think Ellie is just awsome and miraculous because she's our daughter and we are crazy about her, but it could be something else.
We're having a good year this year. Thank Goodness, knock wood, throw salt over your shoulder, and any other anti-jinx you can think of. Thanks for all of your support and kind reactions to this website.
October 8, 2009:
A new home, a new school, a new neurologist, and some new medication.
Before we left Huntington Beach, we saw Dr. Chez one last time, and we noted that the Atavan/Lorazapam was not working anymore. In fact, Ellie had been going through a bad patch that had lasted about six weeks. It was one of the worst periods of bad behavior we had seen out of Ellie.
Of course, by the time we finally made it to Dr. Chez, Ellie had somehow snapped out of it, and we have now been enjoying some of the best behavior we've seen out of Ellie. Go figure. So it's hard to tell if the newly prescribed Zoloft has had anything to do with her happy spell of the past few months, but I'm willing to entertain the thought that it's lending a helping hand.
We visited a great neurologist out of the Kennedy-Krieger Institute in Baltimore, and together we decided to play with the dose a little to see if we can prevent another downward slide in Ellie's behavior. So we've been at a higher dose of Zoloft for a few days now, and I have to say that Ellie has been a joy--happy, productive, communicative--just wonderful to be around.
It is the Zoloft? Who the hell knows at this point. I'm just so glad the girl is happy. She's snuggling against my shoulder as I write this. My little love-bug...
June 22, 2014:
It's been a long time since I've updated this page, so I thought I'd add a postscript. Zoloft was indeed the medication we had been looking for. Low side effects and good results. I took her off it at one point a few years ago just to see how she did and her OCD behaviors took a turn for the worse, so we put her back on it, adjusting the dose now that she's grown-up sized, and she's been doing great.
We still can't say for sure if it's the medicaiton alone. I suspect that Ellie has become more comfortable with herself and getting her needs met, and we've gotten to know her better as well, and are better able to help her get those needs met.
I can't say that this is the end of our medication journey, but I think we'll be able to coast comfortably for a while, at least. May we all reach such a place in our journey.