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November 24, 2003

Behavior

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Question from New York, USA:

My daughter (age 17) was just hospitalized for 16 days for E.Coli septicemia from a silent kidney infection. She was found to have a resolving renal abscess that was drained under CT guidance, and it has been slowly resolving on CT + ultrasound. She is still being treated with antibiotics (now orally) pending another Ultrasound in 2 weeks. She had an A1C of 13 before admission (very non-compliant and VERY resistant to parental involvement for past 2 years despite a GREAT endo). I tried to get a nephrology consult to see if she should be put on beta blockers to protect the rest of her kidney, but the nephrologists said that since her BUN, creatintine, and BP were normal, it isn’t medically necessary. However, her BP had gone up to 150/78 over two 24-hour periods during her stay. (Her last BUN was 13, her microalbumin was pending.)
My questions are:

So nephrologists only become involved after damage is evident, and
Do we send her to a chronic illness program before she does further damage or does she really just have to “wake up” and care for herself in her own time? (We’ve gone to several therapists, diabetes camp, etc. in the past.)

Answer:

From: DTeam Staff

This is a major problem. First you have a serious life threatening infection that may be just bad luck or may be related to chronic poor glucose control. You should discuss this issue with the endocrinologist as well as the nephrologist and infectious disease specialists with whom you are dealing.
More importantly, assuming that she can finish the antibiotic course and move forward, is the long term enormous risks she is taking. With an older teenager with so many years of such risky and self-damaging behavior, you will need to work closely with the diabetes team and also psychiatrists/psychologists/social workers who are familiar with diabetes self-destruction. The key would likely involve close and frequent parental supervision, long-term hospitalization since this is akin to other abusive and destructive behaviors like suicide, alcohol, drug abuse – only it is being done with omitted insulin most likely. What is the underlying social situation in the family? Has this youngsters been abused physically or sexually and is that the source of her noncompliance, anger, self-destructiveness? This will take a lot more effort on the part of the parents and a lot of close contact with the diabetes treatment team to stay available when and if she decides that she does not want to hurt herself in this fashion. Sadly, at age 17, “tough love” may be required on the part of the adults and care team since there may not be a lot of options available. Being sure that the adults at home are not subtly enabling such risky behavior is always an important issue to address as well.
The other question you raise involves the use of kidney protective medications. Usually these are ACE inhibitors if there is protein leakage or hypertension that persists. With an infection like this, the hypertension may be permanent or may be transient and this needs to be looked after. A separate decision involves whether or not this teen will medication on a daily basis even if a decision is reached by her medical care team that this may be warranted. This also requires a great deal of discussion.
SB