Living with Hyper IgM
Expect to make some lifestyle changes.
Changes to lifestyle vary in approach and severity. Mostly, it will come down to the comfort level of parents, the severity of the presentation of Hyper IgM related manifestations, and overall risk tolerance. We recommend adopting the following lifestyle changes, but encourage patients to discuss with their physician:
a. Boiled or Filtered Water Only:
There is little argument about the need to avoid intake of most water sources that have not been boiled or filtered with reverse osmosis filtration. The risk, and potential morbidity of waterborne Cryptosporidium infection justify avoidance of water sources that may become contaminated. People with functioning immune systems can generally recover from cryptosporidium. Patients with Hyper IgM, however, are not protected against cryptosporidium and the parasite will continue to grow un-checked.
There is currently no effective treatment for cryptosporidium, and without any defenses against this parasite, it can cause permanent damage to the liver and lead to death. Accordingly, even in municipalities that have good water sources that are tested for Crypto, the general approach is still to avoid any intake of water sources that are not boiled or filtered with reverse osmosis filtration.
Lakes and communal pools should be avoided. The CDC recently found that “The majority of Cryptosporidium outbreaks were associated with treated recreational water such as swimming pools and hot tubs and involved Cryptosporidium. The parasite can survive for 10 days or more even in water that’s chlorinated to kill germs” . . . as cryptosporidium is “extremely chlorine resistant.” See CDC Website.
The CDC further instructs that Cryptosporidium is one of the leading causes of waterborne disease, or disease caused by contaminated drinking water or recreational water. Recreational water is water from swimming pools, hot tubs, fountains, lakes, rivers, springs, ponds, or streams that can be contaminated with sewage or feces from humans or animals. Crypto is not spread by contact with blood. Crypto can be spread by:
- Swallowing recreational water contaminated with Crypto. You share the water—and the germs in it—with every person who enters the pool. This means that just one person with diarrhea can easily contaminate the water. Swallowing even a small amount of pool water that has been contaminated with the Crypto germ can make you sick.
- Putting something in your mouth or swallowing something (such as food) that has come in contact with the feces of a person or animal infected with Crypto.
- Swallowing Crypto picked up from surfaces (such as lounge chairs, picnic tables, bathroom fixtures, changing tables) contaminated with feces from an infected person.
Many common brands of bottled water are safe for consumption because they undergo reverse osmosis filtration. These brands include, but are not limited to, Nestle Pure, Dasani, and Kirkland (but always check the label before drinking).
Note: Although it is recommended to avoid drinking non-purified or sterilized water, it is considered safe to shower, bathe and brush teeth with tap water depending on (a) the quality of water in your municipality, (b) the age of the patient, and (c) your comfort level. Discuss this with your physician.
b. Crowds, People and Germs:
This is one area where the approach will vary the most. We recommend sitting down for a discussion with your immunologist and finding the best balanced approach. While it makes perfect sense to feel the need to retreat into isolation after first diagnosis, every family will learn as time goes by how to best protect themselves from the germs and viruses that people carry without living in a bubble.
It is mostly recommended that Hyper IgM children avoid daycare and early preschool, a time where the other children are very often sick (part of a normal child’s immune system’s process of learning and training their adaptive immune system to fight off pathogens, which is done through exposure and creating antibodies to every germ they encounter). For Hyper IgM kids, it makes more sense to try to avoid this stage. Still, with good levels of IgG on board and overall low numbers of infections, parents can generally send their children to kindergarten and school. Many of our parents report that their kids are well protected from common illnesses with IgG therapy and may only pull their kids from school if a nasty flu epidemic or unknown virus is going around.
It is also recommended that the child’s teachers are informed about his vulnerability to germs. Early detection of contagious illnesses in the classroom can be essential to keeping your child safe (and keeping them home from school when a teacher reports an incidence of a contagious illness).
It is also recommended to avoid dense crowds, especially indoors.
Still, for many parents considering transplant or dealing with other complications of Hyper IgM, it may be recommended to limit exposure to people to a greater extent in the short term to minimize risks before a procedure or while recovering from illness.
c. Air Quality:
While IgG replacement therapy provides very good protection against many of the dangers Hyper IgM patients face many doctors recommend using an HEPA air filter in the home. The level of filtration and quality of the HEPA filters varies widely and every family should make their own decisions on the purchase of these filters. Here are some of the brands that our families have had some experience with and work well:
d. Household pets and other animals:
Recent Journals articles have stated that patients with Hyper IgM Syndrome should avoid household pets and live cattle. It is believed that these animals can be carrying certain pathogens that are not as common and therefore antibodies against them are not in abundance in the IgG replacement therapy. That said, many Hyper IgM families report having household pets and finding a balance between risk and the therapeutic aspects of having a pet. Every family will make a decisions on household pets together with their immunologist based on factors such as recent infection, proximity to transplant and type of pet. In general petting farms should probably be avoided, but many doctors permit Zoo visits where there are barriers between the animals and visitors.
e. Parks, Playgrounds, Gymborees
As with anyone that is immune compromised, avoiding large crowds is advisable, more so during flu and RSV season. While most families do not restrict outdoor playground activities, it may be advisable to avoid indoor playgrounds and gymboree’s at young ages. Furthermore, playing in sandboxes or soil is not advisable as they can contain and serve as a breeding ground for microbia that Hyper IgM patients do not have defenses against, even with IgG replacement therapy.
f. Fresh Fruits and Vegetables, and other Food Restrictions
- Fresh fruit and vegetables are generally considered safe to eat as long as they can be adequately washed. For this reason, some patients like to avoid vegetables like broccoli or lettuce, which has many crevices and can be difficult to wash. Some doctors advise washing fruits and vegetables with a drop of dish soap, others advise simply scrubbing under running water for at least 30 seconds. It is important to wash the fruit or vegetable before it is peeled or sliced. Peeling and slicing the fruit or vegetable introduces any bacteria that was living on the outside into the flesh.
- Raw meat, eggs and fish should be avoided entirely as they can carry disease and bacteria that a Hyper IgM patient is not protected against.
- Some immunologists also recommend avoiding unpasteurized cheese and dairy products.
g. Restaurant, Fast Food and Buffets:
While there are not clear lines what is safe when to comes to eating out one clear red flag is buffet style eateries. There is little control over what can be introduced into the food at these eateries and for children and adults with Hyper IgM who are already at risk for chronic diarrhea it is advisable to avoid. Some cities have very strict public health laws and grading systems in place and it is worth taking the time to look into the rating restaurants get before choosing a location to eat with your family.
It is generally recommended to limit airplane travel or to take certain precautions when air travel is necessary. The most common sources of germs on an airplane and at an airport are surfaces. Contrary to common belief, the air in the airplane is actually HEPA filtered. Most people get sick from touching the backs of the seats, door knobs, and faucets. Make sure to carry Purell and use before eating or touching your face. Clean your seat, seatbelt, and tray table with a clorox wipe.
And remember, when you’re traveling, be sure to drink bottled water and avoid fresh fruits and vegetables (and anything washed with tap water), and ice.
i. Hand Washing and Purell:
This is by far the most important preventative step you can take to protect yourself. Teaching a child with Hyper IgM the importance of hand-washing before and after eating, using the bathroom, and sneezing or coughing, is a critical step that every Hyper IgM patent and their entire family should follow.
There is a proper way to wash your hands. Scrubbing your hands with soap for at least 15-20 seconds under warm water and using a paper towel to turn off the faucet is the best method. The sink faucet is a source of contagion, as is the doorknob of the bathroom. When using public restrooms, make sure to carry Purell and use it immediately after exiting the restroom.
j. Vaccines and the Flu Shot
Live vaccines are very dangerous to Hyper IgM patients, both if administered and if in contact with someone who has recently had a live vaccine. Although it is highly recommended that anyone regularly in contact with Hyper IgM patients be up-to-date on all their vaccines, it is important to avoid anyone who has had a live vaccine within the past 3 days or so. The pediatrician or doctor can provide exact instructions on how long a live vaccine is dangerous to someone who is immune compromised.
Although Hyper IgM patients do not make a normal response to vaccines, it may be beneficial to get a flu shot because other parts of the adaptive immune system might be primed to recognize and fight those flu strain. The flu shot should be administered as a shot and not as a nasal spray, which has live bacteria and can be dangerous.