Photo by: Big Country15

How Much Does Patient Testimony Matter?

Photo by: Big Country15

Today, I took my teenage son to a new ear, nose, and throat (ENT) doctor. My son’s ENT history was interesting to the doctor. Reliving the story today was poignant.

As an infant, my son suffered from apnea, failure to grow, and an enlarged heart. At twelve months of age, he still could not stand. We stayed with him whenever he slept because he would stop breathing and turn blue.

Over the months, I took him to several pediatricians who refused to refer him to an ENT. Instead of listening as I described his symptoms, every doctor jumped to a different conclusion. My son had numerous misdiagnoses and a trip to the emergency room. Repeatedly, I was accused of exaggerating his symptoms. They actually said, “He does not look sick.”

As a young mom, I felt powerless and had little wisdom about how to navigate medical systems. One day when I insisted that my baby needed an ENT, I was told, “No ENT would see you. He does not need a specialist.” I still remember looking through my tears at him sitting at his desk. Something changed in me. I went home and called a pediatric ENT doctor who had seen my daughter two years earlier when she lost her hearing.

It was a busy university hospital, but at my word, she fit my son in the next day. The doctor knew immediately what was wrong with my baby and promptly admitted him to the hospital for surgery. That night I watched the monitors as his oxygen saturation levels dipped to the 50′s. That blessed doctor operated on my son early the next morning. He had an adenoid tumor that blocked his airway 98%. Every symptom had pointed to that fact.

I stayed in his hospital room with him for a week while his oxygen saturation levels improved daily. That lady ENT saved my son’s life and never charged me a dime. The hospital wrote off the entire procedure.

Two things stay with me: a deep respect for doctors who care for patients and equal disgust for those who work in medicine and ignore patient testimony.

If my son had died, we would have been told it was due to SIDS (sudden infant death syndrome). However, the real cause would have been a lack of attention to patient testimony – in this case by proxy of parent. Can we call that LAPT?
My only point about patient testimony

Unfortunately, there are many more examples of discounting patient testimony in my own family. In fact, there are examples with greater consequences than in this example. Rheumatoid Arthritis patients have also shared stories on this blog that illustrate a lack of credence to patient testimony.

So what does all that prove? Anecdotal evidence proves nothing. My only point is that patient testimony is of inestimable value. It is ignored at the peril of all.

My son? Today I bought him a new Boy Scout uniform – adult sized.

Kelly Young is the creator of the inspirational website and blog Rheumatoid Arthritis Warrior. She is working to increase awareness of Rheumatoid Arthritis (RA), helping people to understand that RA is an incurable disease that cripples and kills. Rheumatoid Arthritis Warrior makes information patients need to fight the disease accessible and understandable, bringing patients together to encourage one another as a community. Kelly is a homeschooling mother of five who has lived with severe RA for four and half years.

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Wow, that's an incredible story. I was relieved to read your son was saved by an operation just in time. Like you, I've been frustrated with physicians who don't really take seriously the symptoms we present -- or they just want to write a script instead of try to find out why something is happening in the first place.

yes, i think mothers r the best judge about what her child is suffering.

i would like to inform here that my mother diagnosed breathing problem in my youngest brother when he was just 6 months old, right in the middle of the night she woke my dad n said they must see a doc. immediately, they took him to the hospital, n there the doctor was surprised that my mother could recognise the problem. it was diphtheria. just the beginning stage.

When our eldest son was 2 he was at the doctors office so much they had his medical # memorized...

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Wow. This just proves that just because someone has a white lab coat and a very large degree hanging on the wall it doesn't make them God (Or a Mom for that matter!) Always trust your gut when it comes to mothering and be an advocate for yourself or your child when you feel that something is just not right!

I also could add a couple stories here, but the bottom line is stay strong and go with your gut when you know there is a problem. All doctors are NOT equal...there is always the one who graduated at the bottom of the class! We have to stop feeling like doctors are on a pedestal and we are below them. They do not always know everything. It is up to us. I always tease that there is a "red flag" on my childrens medical charts because of their mother who has a mind of her own :)

As a nurse, I too believe that a patient or their caregiver's testimony can lead to the best treatment for them. Unfortunately I have had to struggle with a doctor now and then in trying to obtain the best treatment for the patients I care for, and I encourage the families and patients to do the same. Kudos to all of you!

I'm so glad that you did not stop, and that suddenly you realized that you can go right over their heads! My eldest daughter had juevenile rheumatoid arthritis and I was put off as being a hypochriac mom. There obviously was nothing wrong with my daughter, and her pain and other symtoms were all in MY head.

I had the same epiphany you had. As I sat across from a dr...

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My mom complained of chest pains for several months to her Dr. He told her not to worry, it wasn't her heart but he didn't know what it was. He didn't order any tests - not even an EKG that they can do for minimal expense right there in the office. The bottom line is, she was ignored b/c she was poor and on Medicaid and they didn't want to worry with her and not get paid the full amount by Medicaid. She died of a massive heart attack 3/30/07...

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When my son was 2, an Orthropedic Dr said he needed hip surgery but when I went for a second opinion found out that it was really his hip, just need corrective shoes. Drs aren't always right! From then on, I've always got a second opinion.

I had a similar problem, but not quite as severe. My daughter was unable to breathe through her nose since birth. I kept telling my pedi and every time the response was "she's got a cold. she's too young to breathe out her mouth- she doesn't know how to at this age." i kept telling him she obviously does b/c I've NEVER seen her breathe through nose. Nursing sounded like a freight train. She had a pattern to breathing - suck for 4 seconds breathe for 4 seconds...

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We've been fortunate in that our DD has never had any medical issues. However, both me and my sister have. My sister has Crohn's Disease and she was having some issues about 10 years ago. Her Dr. would not listen to her. My sis kept telling the Dr. that she thought she needed surgery. Being an avid journaler, she had written down all her symptoms and how she felt and what was going on with her body. Dr. totally wouldn't listen AT ALL. So, my sis went and got a second opinion...

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What a great story. I am a firm believer in the fact that you are your own Advocate. As a mom you are your child's advocate. Good for you, getting him in to see an ENT even after they told you they wouldn't see him. Intuition is a big thing. When doctors do not listen, and you know something is wrong, it's up to you to move on and find someone else. There is nothing worse than a doctor that "blows you off". All Drs do not know all things.

Your story is similar to ours in that our daughter had problems since infancy which were repeatedly dismissed as unimportant by various doctors. And as she grew older we were told her problems were "mental," and we too were accused of exaggeration, and we too were told, "She looks FINE, to me!" My daughter was furious! She was NOT fine! And, it was not "mental" either (

I felt so unsure of myself...

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Sometimes doctors can get so wrapped up in their day, think they have seen everything and think all mothers are paranoid. Bottom line is always speak out for your child until some doctor listens. Your mothers instinct is usually right...

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My son had many ear infections as a baby and we took him to a popous ENT that said he needed tubes in his ears. When I said I thought he had trouble breathing through his nose the doctor ignored me. He was excellent with my son but very rude to me and I should have gone elsewhere. By the time my son needed a second set of tubes I had wised up and went to a different doctor...

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