My sons are 16 and 18 and have Hereditary Spherocytocis, a disorder that makes the red blood cells spherical instead of "bialy" shaped like they should be. The condition is essentially cured my removing the spleen. They both have had their spleens removed and were prescribed prophylactic penicillin twice a day for an indefinite period of time. This is supposed to protect them in case they become infected with certain bacteria that can be a serious threat for a person without a spleen. With the latest information on the overuse of antibiotics and how it's affecting our health (e.g., healthy bacteria in the gut is killed, resistance builds to other antibiotics, etc.), I'm concerned about this. I've stopped giving them the penicillin daily. What is your understanding of this trade-off? Which is more harmful in the long run, not taking penicillin at all or taking it every day of their lives?
There are often difficult trade-offs associated with taking medicines; you’re smart to educate yourself on this matter and to look at all the pros and cons of your sons' drug regimen. As you described, spherocytosis is a genetic condition that causes the red blood cells to be spherical instead of looking like a flattened disk. The spleen removes the misshapen red blood cells from circulation and destroys them. As a result, the body doesn’t have enough red blood cells — which is concerning because they carry oxygen throughout your body. The condition is often remedied by a splenectomy, a surgical removal of the spleen. Though it’s a safe procedure, those who've had their spleen removed have a life-long risk of developing overwhelming post-splenectomy infection (OPSI), also known as sepsis. This risk is typically managed through prophylactic antibiotics. But taking them for a prolonged period of time is not without its own set of risks and those risks are taken into consideration when the medication is prescribed (more on that in a bit).
Here’s a bit more about OPSI: A few different microorganisms can cause OPSI, but the most common one is called Streptococcus pneumonia. Unfortunately, the mortality rate of OPSI is high; 68 percent of people die within 24 hours of developing OPSI, and 80 percent die within 48 hours. Preventing OPSI relies on constant vigilance through (1) education on risks and how to respond, (2) immunizations as recommended by a health care provider — particularly the pneumococcal, meningococcal, and influenza vaccines, and (3) antibiotics, which may be prescribed for a short time, for life, and/or for keeping on-hand in order to immediately respond to possible infections. Some people also choose to wear a medical bracelet that will let others know that their spleen has been removed. Individuals without spleens should contact their health care provider immediately in any of the following situations:
- They suspect they may have an infection, especially when traveling to tropical countries (where parasitic infections may be more likely).
- They develop a fever.
- They are bitten by an animal.
While educating yourself and receiving recommended vaccines are undoubtedly helpful, as you noted, taking antibiotics for an indefinite period of time has some risks involved. There is some uncertainty on how effective antibiotics are when they are taken as a preventative measure for this condition (rather than taken to treat an existing bacterial infection) and on how long they should be taken. Risk of antibiotic use and overuse ranges from allergic reactions (like a rash) to antibiotic resistance. Prolonged use of antibiotics could also lead to infection from Clostridium difficile (bacteria that can cause diarrhea and sometimes more serious intestinal issues like colitis). It's good to note, however, that health care providers are aware of the pros and cons and are trained to only prescribe antibiotics for the shortest amount of time that is deemed medically necessary for a given patient and condition.
Reader, you ask which option is more harmful in the long run for your sons — taking antibiotics for an indefinite period of time or stopping them altogether — and unfortunately, there is no easy answer. Only a health care provider can make the most informed decision based on your sons' specific medical history. If you’re questioning your health care provider’s decision, it might be best to talk to her/him directly or to get a second opinion from another provider. Best of luck to you and your family!Alice!