Saturday, October 31, 2009

What We Don't Know - Can it Hurt Our Children

I have been haunted lately by the reality of what we don’t know that might make a real difference in the lives of our children and adult children.

As most of my regular readers know, Billy Ray has chronic pancreatitis, which comes with severe pain and other issues such as pancreatic insufficiency, which has similarities to diabetes. When he was originally diagnosed, I was told that it was caused by Depakote, which he had taken for a number of years for his bipolar. Early last summer he was referred to the chronic pain management clinic at OHSU. There I learned that they see many patients with Down syndrome and pancreatitis.

During research for my first book I spoke to several doctors and medical schools about how much training medical providers are actually given regarding children and adults with special needs. The phrase “touched on lightly” seemed to come up in many conversations as an example of how little actual training in special needs was provided to medical students.

According to the National Association for the Dually Diagnosed (an association for people with both developmental disabilities and mental illness diagnoses), a survey of doctors in the state of Illinois found that, out of 312 respondents (a 24 percent response rate), 95 percent acknowledged that they treat patients with developmental disabilities and 70 percent acknowledged that they had no formal training in the area.

In the foreword to Parenting Your Complex Child, genetic counselor Kate Crowe alluded to the problem as well:

“Medical researchers don't study many complex children. As health care providers, we depend on the published research to inform us so we may provide advice and guidance to families. If a patient is "complex", and doesn't fit the description of a single condition described in the research literature, we are left with little to share. Teaching parents to observe and problem-solve empowers them to fill in the information gaps for themselves.”

In Billy Ray’s case the enlarged pancreas, which may have been the beginning of the pancreatitis was not found easily. He had been sick for a couple of months and nothing definite enough to be causing his rapid deterioration could be found. I have written about that experience here.

As shared in the post linked above, when I took Billy Ray to the emergency room in July 2005 the emergency room doctor wanted to send him home on increased pysch meds. The cause of his severe pain was only dealt with after I advocated strongly (read that blew up) and further testing was done.

The more we know about his medical needs the more we are able to deal with his behavior issues. It has certainly made a difference in his life. I can’t help but wonder with doctors not being given enough information about things that might be common in certain disabilities and parents having no way of knowing, how many behavior problems are being treated with pysch meds (which don't really work anyway) when they are really medical issues.

Until next time,

Peggy Lou Morgan
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Lora said...

It is a shame that the doctors are so ill-informed...truly sad indeed. I am not sure that I ever told you that Griffin is also Bipolar and is taking Abilify which seems to help for the most part. I hate that because I am Bipolar that I passed it on to him. There is mental illness on both sides of my family so I didn't have a chance. And since Griffin's dad has been absent since before he was born, I don't know his family history.

I just hope that by the time Griffin is much older that perhaps the doctors will have a clue and be more educated and experienced with special needs patients...I can only hope.

Sorry I haven't been by in so very long. I have been taking online classes and it really keeps me busy, if fact I am supposed to be working on a paper right now.

Hugs to you and Billy Ray!

Unknown said...


This is the assistant editor for which is a medical publication offering hospital news, information and reviews. We also cover a wide variety of medical issues, one of which being Pain Management. You will notice one of the many articles on this topic on our homepage. If possible I would like to be included within your blog roll, offering our information as a resource to your readers. Please let me know if this addition can be made.

Please email me back with your URL in subject line to take a step ahead and to avoid spam.

Thank you
Mary Miller,

jo oliver said...

I wish you and Billy Ray the very best. I know all to well what you are going through. My daughter is totally handicapped- mitochondrial disease. I have not found a doctor yet that has been helpful or informed. Anyway, I enjoyed reading your story very much. The parent is the ultimate advocate!

anadrol said...

So true! You have to be your own teacher and a doctor. You have to search for information by yourself. Thesedays doctors are just not reliable anymore... they don't take enough time for you.

dancilhoney said...

You did a fabulous job with this writing and are a great inspiration. I draw on what I learned on a daily basis. child behavior problem

special needs equipment said...

I also wish you and Billy Ray the very best in the future and I think I know what you're going through. Regards..Grant