When the care you’re receiving just isn’t good enough

The other day I received a call from a distraught sister-in-law who was visiting my niece, her daughter, in a developing country where this lovely young woman had gone to have adventures and live in a rural setting. My niece had developed a high fever, chills, vomiting and pain in her back, over the kidneys. From a faraway doctor’s point of view, the most likely diagnosis was pyelonephritis or a kidney infection. There followed a mad scramble, carried out with me on the phone on one end and her mother on the other, trying to get help in a language we do not speak.

A treatable condition in a region with limited resources

Pyelonephritis is a treatable (though serious) condition that, in this country, would be treated with antibiotics and “analytics” – that is, an antibiotic would be started AFTER blood and urine had been obtained for culture, and the type of antibiotic adjusted to fit the organism that grew in culture. Antibiotics would be given either orally, intra-muscularly (a shot) or intravenously, depending on the clinical condition of the patient, and they would be treated in the emergency room, in the hospital or at home, again strongly depending on their clinical condition. Their condition could range from “uncomfortable” to “life-threatening septic shock.” And, of course, one condition could evolve into the other and require critical, ongoing reassessment. Later, further analytics could be performed to try and figure out why the kidney had become infected in the first place.

But this was rural Central America, and not one of those places filled with tourists and their amenities. “Get to a doctor now,” was my first advice.

“He’s out to dinner with his family,” I was told. I kept insisting. My niece didn’t want us to “over-react.” Her mother handled it well, but I know she wanted to jump out of her skin with fear. A few hours later they were seen in the local, public hospital (“terrifying” my sister-in-law reported) and given an oral antibiotic and a prescription for “X-rays” the next day. “Get out of there,” was my next piece of advice. “Get on the road and drive the three or four hours to the capital city where there are better hospitals.”

Despite her fever, chills and pain, my niece was reluctant but her mother was insistent. “If she is stable,” I said, “drive straight to the airport and fly home to the US. If she is worse and seems unstable, drive straight to the emergency room.” Dr. Google, accessed via that blessing called a cell phone, had given us the names of the best hospitals in the capital city as well as their addresses and driving directions. My sister-in-law, alone in a foreign country but determined to get help, drove my niece straight to the airport and they flew home.

How does this relate to my experience at Kartini Clinic?

Similar crises, closer to home 

There are many similarities to my sister-in-law’s situation and that of some parents who find that their child has an eating disorder. “Do not visit rural public hospitals in this country,” the online advice read. Right. But what if it’s all you have? You are a layperson; how much should you question and challenge local staff trying to help you? Well, I guess the answer is, as much as is necessary to get immediate help and, then, if the child is worse, get the hell out of there. Remember, in the past people did actually die of infectious disease such as pyelonephritis, pneumonia, gangrene and tetanus before we had immunizations and antibiotics and good hospital treatment for shock.

This experience made me think about the many families who write Kartini Clinic to ask, “If there is no good treatment where we live, what should we do?” They are not kidding. There is no good treatment where they live.

The FEAST forum and the advent of home-based re-feeding has made it possible for many people to contemplate rescuing their own child with anorexia nervosa at home and to be successful at it. Like oral rehydration for diarrhea, it can be safely and effectively done by parents – it saves lives. But it cannot always be done successfully, and recognizing when it is not working and/or when the child is too compromised for this approach is critical to the safety of the child.

A child who is extremely starved, has barely taken in food or fluids for weeks, has a very low blood pressure, a very low heart rate and whose thinking seems slowed down or altered probably needs a higher level of care. One whose caloric intake has been very low (say less than 1000 kcals a day) for a prolonged period and who has lost a great deal of weight, should probably have their phosphorus monitored if they are going to be re-fed at home. And even those who are re-fed at home need useful guidelines and constant re-assessment. How to do that?

Set a weight gain goal and stick to it. Do not allow your child to gain a pound, then lose a pound, then gain a little, consoling yourself that “at least they are eating.” Set a weight gain goal of 0.3 lbs a day (averaged over a week) and if you do not get it, seek further help. Set a goal and stick to it. Think what’s at stake.

And then sometimes you just have to get the hell out of there.