I too have had this same event recently. My now 5 month old son was diagnosed at age 4 days with SWCAH with a potassium of 9.6. The medical team did the same thing with increasing the Hydrocortizone, Florinef, and Sodium Chloride.
Your sister's team is doing the right thing. When the Potassium is that high for a few days or even weeks, the heart and body starts to adapt. Therefore, if you lower the potassium too quickly it can have a shock effect on the body especially the heart. Therefore, the team is lowering the potassium slowly but steady. (For example, if a 3 pack a day smoker were to stop smoking in one day, the body would go into withdrawal from the "toxin" and shock effects such as tremors, GI distress, and even heart palpitations could occur.......The same thing goes for Potassium) The elevated potassium is a "toxin" to the heart, however lowering the level too quickly could have additional adverse effects. Therefore the health care team is taking a cautious approach and lowering it slowly.
Your sister will also notice this effect with the 17ohp (17 oxy-hydroxy-progesterone?) levels in her infant. During the CAH diagnosis the levels tend to be very high. But with treatment, the levels slowly come down over a few weeks.
The best advice for your sister....ASK QUESTIONS of the health care team!!! You can never ask too many questions, especially to clarify their course of treatment. When my son was born with this condition 5 months ago, I had never heard of it. THis is unusual in my case because I have been a Master's Degree prepared critical care/trauma nurse for 10 years. The only way I learned about CAH was to ask many questions, keep a journal of the questions and answers, and then ask again if I still didn't understand.
Hope this helps!!
Sara
