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Misdiagnosis – When Doctors Don’t Have Answers

The last six months have been a haze of doctors’ offices, medications, meltdowns and unexplained illnesses for my youngest son.

He has received several different, significant diagnoses in this time frame.

He has been treated according to the standard protocol for each of these diagnoses.

Nothing has worked.

As a result, after a very serious reaction to medication and a week-long hospital stay, every diagnosis he has been given is questionable at this point.

The truth is, no one knows what is really going on with my sweet little guy – except that everyone knows he is in pain and suffering.

Sometimes, doctors don't have answers for our children.

As part of ongoing evaluation and medication management, two weeks ago we had the opportunity to interact with some of the best therapists our local children’s hospital has to offer.

They adored my son. He adored them.

They saw him as a unique, ten-year old boy – not a collection of symptoms and diagnoses.

They helped him name some of the issues he has been having with his body.

They gave him words to describe the gripping anxiety and restlessness he feels almost all the time.

They genuinely made a difference.

And when all the testing and sessions were complete, these wonderful therapists, from all different disciplines, sat down with me and admitted that more time and evaluations are needed. They had no answers at all.

You might think I left discouraged or disappointed.

I didn’t.

You might think I was angry that we had spent so much time and money, to have no real clear results.

I wasn’t.

I was grateful. For the first time in years, I felt like professionals had really gotten to know my precious son. I appreciated their ability to just be honest.

I know the DSM-5 so much better than any suburban mom really should.  I know he fits some elements of one diagnosis, and some of another.

I have seen how complicated his brain chemistry can be – first hand.

For the first time in years, the professionals seemed to understand this as well.  There was no rush to fix. No rush to diagnose. No rush to prescribe medications. No rush to refer.

We all were finally on the same page – this kid is amazing and he is as complicated as it gets.

Sometimes, doctors don't have answers for our children.

I expected the meeting would be devoted to the usual next steps. Referrals and evaluation recommendations are par for the course at this point.

While that was part of it, most of our time was spent discussing how best to help my son right now, just as he is.

We reviewed my schedule for our days and the usual points of stress. We talked about what causes the most difficulty for him and for our family.

They were encouraging and supportive – there wasn’t a hint of judgement or concern, just  genuine interest in what our lives look like outside of the walls of a sterile office.

And then, one of the nurses said something that I have thought about every single day since –

“Reward and recognize what you want to see more of. Encourage him that there is so much he is already doing really well.”

As a mom of children with special needs, this blew my mind. Not because I don’t agree with it.

No, this completely floored me because this NEVER happens. Not in this scenario. The focus is always on how to fix and change problems, or how to medicate and alleviate pain.

A treatment plan for my sons usually reads like a hospital case file.

And there are times where that is absolutely what is needed.

But not this time.

This time, it really was most appropriate to just see what is working and celebrate it.

There is so much he is handling well.

He needs to be rewarded and recognized.

He needs to be encouraged.

He needs to know that he can and will survive this, and live well.

He needs to know that I see him, even when it all seems wrong.

He needs to know he is a beautiful gift, all the time, even in the ugliest moments.

Sometimes, doctors don't have answers for our children.

The treatment team reiterated what I have known along, despite my doubts and failures.

Focusing on the good is how we find our way.

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  1. Jen in Oz says:

    Congrats on finding a good medical team. Enjoy your son!

    Best wishes,
    Jen in Oz

  2. So glad that you had supportive health professionals around you, and praying that they are able to help him more as time progresses

  3. We got neuropysch results back for my boy this week. The report just says everything I know about my boy, with no definite clear answers, except he didn’t make the gifted program cut off (again). I haven’t always believed professionals when they say he’ll be “fine” – really? what does fine look like to you? But this psych did spend 5 hours with him, so I feel like she has slightly more of a clue!

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