When Doctors Don’t Know How to Help

From misdiagnosis to no diagnosis … what can a parent do?

First Posted on Parent Society By lisamorenodickinson

Have you ever been in this situation? You’re in a doctor’s office (or at a hospital) with your sick child and the physician says, “We don’t know what to do.”

Not only are these words hard for a parent to hear, but they can also weigh heavily on a child old enough to understand what’s going on. Children look up to doctors as their heroes, so when a doctor can’t help, it is as bad as a fireman saying, “I see the fire but I can’t put it out.”

Is this society’s fault for putting so much pressure on our known heroes to always be able to help, when in reality they are as human as you and I?

It’s not just the kids, either, who are thrown for a loop when the doctor can’t help. It is hard for some parents to accept that the doctor may not know what to do. Haven’t they been given the tools to educate themselves on diseases a child  may have ?

As a parent who has gone through so much with my son  — now 2 1/2 –  I understand both the parents’ perspective and the doctors’ perspective. This is why I want to be the voice for both, and especially the child.

This weekend, a family had been at the hospital with their son and was being told by their doctor that  “they didn’t know how to help.”  This was said as their little boy was in such pain and couldn’t move his legs. The toddler did have a rare disease that we (stopCAIDnow.org) covers, and the family had been referred to us by another patient. When learning of the situation, I reached out to everyone involved and tried to get the boy transported to a hospital that was an hour away.

Even though I had gone through this myself, I was still moved by the story, and my heart understood how they were feeling. After two hours, we got the approval to have the boy transported. I was relieved to know the family would be in great hands. The best news came  the next day when the mother told me that her son was up playing and able to move his legs without pain. The whole family was treated wonderfully and the child was helped…..that’s all a mother hopes for when her child is in pain!

This is why StopCAIDnow.org  partnered with the Cleveland Clinic to develop the first Continued Medical Education (CME) program for Childhood AutoInflammatory Diseases (CAID). Education is essential in order to make a proper diagnosis and provide treatment for the child. I don’t want any family/child to go through what my son did.

Having a child/loved one suffer with a disease is horrible. Having a child with a rare and/or genetic disease that many are unaware of is beyond difficult: it makes diagnosis, treatment, and a cure less probable.

No child should be turned away because a doctor can’t explain their symptoms. No child/patient should ever be misdiagnosed … and suffer because of it.  Education is the key, awareness is essential and research is a must!! Doctors want to assist their patients. We just need to make sure they are provided with the tools and education to be able to provide the  help needed!

To reach the author:  Lisa Moreno-Dickinson, CEO, StopCAIDNow, [email protected]