Management

Health and Lifestyle

There are a variety of supportive therapies; only the most important are addressed below:

• Mouth Care: This should include regular dental check ups. Excellent oral hygiene is very important and the use of an antibacterial mouthwash is recommended.
• Immunizations and Vaccinations: People with SCN have an intact immune system that allows them to make normal antibodies protecting from the devastating effects of viral illnesses. Therefore all routine immunizations according to the standard vaccination schedule of your country are recommended.
• Monitoring Temperature: If you have a fever above 38.5°C/101.3°F you must seek medical attention.
• General Hygiene: This includes thorough hand washing and attention to scrapes and cuts on the skin.
• Oral Prophylaxis: Antibiotics/antifungals, either oral or intravenous, may be given to SCN patients but this is very much based on individual physician choice.
• Prompt Contact of Hospital / Clinic: It’s important to have the contact telephone numbers of your physician and clinic.
• Foreign Travel: Travel is an option but should always be considered with the counsel of your physician

Advice on H1N1 Vaccine

This question came to NNN president Lee Reeves via email. She forwarded it to Peter Newburger MD, Vice Chair of Pediatrics at the University of Massachusetts, SCNIR advisory board member and medical advisor for the National Neutropenia Network Board of Directors.

Question: I am writing to get some information on the recommendation of the H1N1 Vaccination. Our daughter has AIN. She gets the G-CSF injections twice a week at 0.2ml. We talked to our doctor and he highly recommends getting this vaccination when it comes available. I have talked to others in the same situation whose doctors told them NOT to get it because it has not been tested enough for the possible side effects. We just don’t know what to do. Is there any more information or recommendations on what we can do to prepare for this? Is it HIGHLY recommended that children with neutropenia get this vaccination? We are scared and do not know which way to go. Thanks for your help! Recommendations.

Answer: I have checked with an infectious disease specialist and also with other SCNIR advisory board members. Here is our recommendation: All neutropenia patients receive the H1N1 vaccine. For those on G-CSF with good responses, that is just part of being treated like normal children, who should also receive the vaccine. Those who are still neutropenic, on or off G-CSF, are particularly at risk for bacterial superinfection if they get H1N1 influenza, so they too should receive the vaccine. The known risks of NOT having the vaccine surely outweigh the unknown, speculative risks of receiving it.