Thursday, May 04, 2006

What Have I Done to My Son..When You Regret Decisions

As parents there are so many decisions to make for our children. We make them with the information we have available to us at the time. Sometimes that information changes and hindsight shows it was not a perfect decision. When that happens it is so easy to beat ourselves up with the choices that we have made.

We have talked about medication for behaviors, risk of side effects in several posts. See Behavior Medication Friend or Foe and More on Behavior Medication for prior discussions on behavior medications. I also did a post called Evaluating Risks .

I have been agonizing about decisions relative to even simple meds like antibiotics because of the impact they have had on Billy Ray’s recent pain. On the prescription bottle, Brice Stanley, PA-C, refers to it as “extreme pain”. This is pain is from pancreatitis, which is believed to be caused by his years of using Depakote for a mood stabilizer and antibiotics for various infections, especially skin infections.

We always check out medications cautiously before agreeing to them. My husband researches them on the internet and provides me with links or massive printouts. We think something is safe to find later that more information is available and it is not as safe as we thought.

It is very upsetting to see his pain and know that my decision to use Depakote has caused him pain. At the same time, there is joy in seeing the quality in Billy Ray’s life while using that drug.

It would be easy to blame the drug companies entirely and some of that is reasonable. I find myself saying that they don’t evaluate drugs for disabilities as they should because their return might be less. Then I remember drugs that were recently pulled off the market, thought to be wonder drugs for arthritis but believed to be connected with heart attacks, strokes and even deaths.

Alternative natural approaches are generally safer. We have tried many, which didn’t help.

What is a parent to do? It would be easy to get stuck in grief over poor choices. I have certainly been there and done that. Eventually you have to go on in order to maintain as much quality in the present life of your child as possible.

We use as many non-medical approaches as possible. Arranging Billy Ray’s schedule and environment in the most comfortable way possible reduces difficult behaviors and frustration. Thus, less medication is necessary. Documentation so that the professionals have a clear understanding of what he experiences helps to make sure the recommendations by professionals are informed recommendations.

The quality of a child’s life must be weighed against the risks. It is a constant juggling act and must be looked at over and over. Having done that sometimes you have to allow yourself to say “I did the best I knew to do” and live with it. That’s the hard part.

Until next time,
Peggy Lou Morgan
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sarah said...

I know your struggle. I debated for 5 years whether or not to medicate my complex special needs daughter. Finally, when the violence didn't stop and she began hating herself, I decided enough is enough we went to meds. She is now on Abilify, and while I worry about the long-term effects, I finally have a happy child, a sane and safe home life, more peace, a child who doesn't say "I should just die" all the time. I figure it's my role as a parent to do anything I can to make her life better, and that, sadly, involves some tough decisions.

Lora said...

Just wanted to stop by and let you know that I am thoroughly enjoying your book. I posted a bit about it on our blog. I would like to peak the interest of my readers so that they will buy your book because it is so insightful and informative. This was an excellent post but I can't really add much since Griffin isn't on meds on a regular basis. I enjoyed reading it nevertheless.

Daniel Haszard said...

Appreciate your blog,mental health consumers are the least capable of self advocacy,my doctors made me take zyprexa for 4 years which was ineffective for my symptoms.I now have a victims support page against Eli Lilly for it's Zyprexa product causing my diabetes.--Daniel Haszard