Comment by throwawaysadly | Hacker News Reader

Comment by throwawaysadly | Hacker News Reader

This hits close to home for me. My 3 year old daughter was recently diagnosed with a rare form of cancer (with a rather poor prognosis).

We brought her to a pediatritian in two states, both thought it was nothing but "growing pains". Her limp got worse, she was in incredible pain for days. She would develop fevers with no other symptoms.

She would mysteriously get better, then a month later it would happen again. Each time it got worse and her pain increased, the limping was more pronounced.

They misdiagnosed her and wanted us to see a specialist for it. We refused to wait a couple months to get an appointment with one and demanded to see someone, anyone else.

We eventually got to see a doctor (not a pediatritian) that at least done their done and ordered proper tests. Unfortunately they found bone lesions. Upon closer inspection they found a primary tumor in her abdomen, the cancer has already spread to her bone marrow (hence the bone pain/lesions and limping).

She's doing pretty good now-- still along ways to go for treatment though.

All in all-- as a parent you need to follow your gut and don't trust everything doctors say or feel. We lost a few months due to poor pediatricians that couldn't do their job (these were pediatricians at well known places).

Not pediatrics, but I had hand issues and went to a handful of doctors over the couse of two years who dismissed me after poking or prodding my hands a couple times.

AFAICT there's no way to _know_ a doctor has experience and wisdom, but it's crazy that doctors won't even order relevant tests done. It's not a matter of costs - all they need to do is ask first.

In the end I went to the Mayo clinic in Minnesota where they performed a thorough battery of tests and gave me a proper diagnosis within a couple days. If you're at your wits end, at least I can recommend them as being diligent.

My GF's gone through the same windmill, over the span of seven (or more) years before finally getting a diagnosis. Multiple ones actually.

Her abdominal pain issues and discomfort were blamed on period pains first, then IBS (because her mother has that too), until finally, after she herself asked for it, she was diagnosed with endometriosis (and an ultrasound revealed a 10cm cyst).

Likewise, she's struggled with being punished for being a naughty child during her upbringing, school problems, and later depression and suicidal tendencies when put on medication for either depression or birth control. It was only once her son was diagnosed with ADHD that she recognised those symptoms and got herself a similar diagnosis. Both are on proper medication for that now and it's a huge improvement for both.

TL;DR there's still a lot of ailments that aren't easy to diagnose.

Your girlfriend also made the "mistake" of being a woman, and I wish I were kidding about that.

The fact that "borderline histrionic" is diagnosed much more often in women echoes back to the Victorian diagnosis of "hysteria", and pain reported by women is often discounted.

And unfortunately for her, ADHD also falls into the category of doctors ignoring women. It's slowly getting better, but essentially, all diagnostic tools were tailored to boys, and the first studies for girls' symptoms were beginning to come out in the early 2000s.[1] If you read that article, you'll also find that her way to discover ADHD is common for women - you find out because your child is diagnosed.

It's not only that ailments are hard to diagnose, it's that most medical research is tailored towards white males. (And most experiments are geared towards the college age group, due to ready availability).

The further you're outside of that group, the more work you'll have to do on your own.

[1] http://www.apa.org/monitor/feb03/adhd.aspx

First, I'm sorry to hear about your daughter's diagnosis. I'm also sorry you and your daughter had to go through that experience in the first place. If you're comfortable, I'd love to hear more about your experience.

For example, what were your expectations going into the appointments with the first two pediatricians? What were you hoping they would do that they didn't? What did they miss that the eventual doctor got right? Did you and your daughter felt heard or ignored by all of them?

Reply on news.ycombinator.com