Childhood Diseases Reaching Out to Adults

16 12 2014

Angelina Jolie has chickenpox, and a passel of NHL players suffers at home with mumps. What’s going on?

Adults are getting knocked sideways by childhood illnesses because (1) when they were children, they missed one or more recommended vaccines, (2) there were no vaccines for certain diseases when they were young, or (3) the protection they received as children from vaccines is waning.

It’s also possible that a vaccine simply didn’t work for this or that person. It happens.

I was already an adult when the chickenpox vaccine first became available. A couple of years prior to the release of that vaccine, my little nephew became infected. He was miserable, and as his parents were out of town, I was the go-to person.

I bathed him in cool water to help bring down his temperature (does that really work?). I cuddled with him, and generally took care of him until his parents came home.

A couple of weeks later, my face erupted in what I thought were spectacularly huge pimples. They flattered my shiny new adult braces and first-ever pair of glasses.

I could not understand why I was breaking out, and then I remembered. My nephew.

I called my mom to see if I’d had chickenpox as a kid, and you already know the answer.

Well, that was a long time ago, and I can happily report my nephew and I had complete recoveries.

All this is to say that diseases lurk. It doesn’t matter how old or young we are, if we’re not protected, we’re open to infection. And, diseases from our childhood pose just as much risk to us as adults.

It takes one phone call or email to the healthcare provider’s office. Ask about all vaccine-preventable diseases, and where you are in your level of protection.

 

 

by Trish Parnell





Summer + Mosquitoes = Dengue Fever?

13 05 2014

The dengue fever virus is the most common virus that mosquitoes transmit and infects about 100 million people worldwide every year, killing about 25,000. In spite of this frequency, though, the United States, with the exception of Puerto Rico, has been mostly dengue-free for decades—until 2009.

image by infidelic

That year, a woman in New York turned up with a dengue infection, having just returned from a trip to the Florida Keys. Her case was the first of a handful that led public officials to conduct a survey of the Key West population. To their shock, they found that about 5% of residents, or about 1000 people, showed evidence of dengue exposure in 2009.

The mosquito that carries the virus occurs in warm areas of the country, including Florida and Texas, and indeed, isolated cases of dengue have cropped up a few times since the 1980s along the Texas–Mexico border. But the cases in 2009 and more in 2010 have authorities concerned that dengue now has achieved an intractable foothold on the continental United States.

Work on a vaccine against dengue is ongoing, but in the meantime, the only preventive is to avoid the bug that carries the virus: the mosquito.

Wearing repellent when in areas where they occur is one tactic. Another is removing breeding places, such as any containers with standing water. The precautions apply wherever you’re going, whether to areas where dengue is already endemic or where it is emerging. The CDC provides regular updates for travelers, including a page specific to the Florida cases.

Dengue fever can hit hard or harder, depending on the symptom severity. The “mild” version of the disease can involve a high fever, a rash, severe headache and pain behind the eyes, and nausea and vomiting.  Given that these symptoms are largely nonspecific, if you see your doctor about them and have traveled in a place where dengue fever occurs, be sure to mention it. A more severe form of dengue fever is dengue hemorrhagic fever, which begins much like the “mild” form but then progresses to symptoms that can include nosebleed and signs of bleeding under the skin, known as petechiae.  This form of dengue can be fatal.

The most severe manifestation of the disease, dengue shock syndrome, includes the symptoms of the milder forms along with severe abdominal pain, disorientation, heavy bleeding, and the sudden drop in blood pressure that signals deadly shock.  Onset is typically four to seven days after exposure, and the mild form usually lasts only a week, while the more severe forms can involve either a progressive worsening or a sudden worsening following an apparent improvement.

Oddly enough, having dengue fever once does not mean you’re safe from it. Indeed, some studies indicate that a second bout of dengue fever often can be worse than the first, with a greater risk of progressing to the hemorrhagic form.





Meningitis Outbreaks This Holiday Season

25 11 2013

What’s going on with meningitis at Princeton and UC Santa Barbara?

Both universities are experiencing an outbreak of meningitis—specifically, serogroup B (that’s the genetic fingerprint of the particular strain of meningitis).

In the US, we don’t have an approved vaccine against this serogroup or strain, but we do have vaccines that fight other strains of meningitis, such as C and Y. Those vaccines are working great!

We’re seeing more serogroup B infection right now because there’s no vaccine available in the US to control transmission. And, we’re seeing an outbreak because that just happens sometimes, particularly when there’s no vaccine to prevent it.

As of 25 November, there have been seven cases identified at Princeton, with a probable eighth case not yet formally identified. Three cases have been identified so far at UC Santa Barbara.

Some of the cases have been serious, but to date there are no deaths. Dr. Amanda Cohn, a pediatrician and expert in meningitis with the CDC, talked about these outbreaks today in a teleconference.

She said that while health departments and healthcare providers should be aware of symptoms and think about meningitis should they see indications, it is safe for the college kids to come home for the holidays.

CDC is not expecting transmission in the home. It tends to occur with very close contact (“french” kissing, sharing a room and coughing all over a roommate). Generally, you might get either meningococcal meningitis or meningococcal septicemia from a meningococcal infection.

Symptoms of meningococcal meningitis as noted by CDC include:

  • Sudden onset of fever
  • Headache (severe)
  • Stiff neck (hurts to move it)

Other symptoms might include:

  • Nausea
  • Vomiting
  • Photophobia (increased sensitivity to light)
  • Altered mental status (confusion)

The symptoms of meningococcal meningitis can appear quickly or over several days. Typically they develop within 3-7 days after exposure. This infection can be serious with long-term consequences such as hearing loss or brain damage, and it is at times fatal.

Symptoms of meningococcal septicemia may include:

  • Fatigue
  • Vomiting
  • Cold hands and feet
  • Cold chills
  • Severe aches or pain in the muscles, joints, chest or abdomen (belly)
  • Rapid breathing
  • Diarrhea
  • In the later stages, a dark purple rash

These symptoms can come on in a matter of hours and the infection is very dangerous.

Prevention means washing your hands and covering your coughs and sneezes. Get up-to-date on your immunizations (no matter your age) and know that, if a healthcare provider suspects someone in the home may have an infection, those in close contact will receive antibiotics to prevent the spread of the disease. There are some manufacturers working on vaccines that include serogroup B for approval in the US, but they are not yet at the final stages of development on those vaccines.





Here Come the Germs!

24 09 2013

I love my kids. I do. But, may I just say, entre nous, that my heartbeat slows and I’m immersed in a narcotic sense of freedom when they toddle off to school each September.

That euphoric bliss lasts about two weeks. Maybe. Then come the colds, the aches, the lethargy, the sniffles, the who-knows-what.

Does your family experience the same thing? Here’s what’s going on:

  • In the US, kids under 17 years of age experience over 50 million colds each year. M-m-million!
  • Kids miss almost 22 million (there’s that “m” word again) days of school due to colds.
  • Diarrhea is no slouch when it comes to affecting the health of our kids—it’s a big contributor to missed school days.
  • Bacteria and viruses can survive on desktops, doorknobs, walls, water spigots, cafeteria trays, shoes, backpacks, purses, and other surfaces for minutes or even hours. A few even longer, depending on the environment. The germs lurk on surfaces, waiting for unsuspecting hands to slide by and pick them up.
  • Some kids and teachers don’t cover their coughs and sneezes, and they don’t clean their hands when it’s important to do so. Depending on the germ, it may float in the air and wait to be inhaled, or drop on a surface and wait to be picked up, or transfer from germy hands to surfaces or the waiting hands of others.

What can we do? We can’t completely protect our kids from the germs in the world (and there’s no way I’m homeschooling), so we teach them how to protect themselves and live with the fact that they’re occasionally going to pick up germs. Picking up germs is not a bad thing. That exposure helps strengthen the immune system and does other good things for the body that are best left to another blog post.

To keep illness down to a manageable level, share these tips with your family:

  • Wash hands with soap and water after coughing, sneezing, playing inside or outside, going to the bathroom, or touching animals, and before preparing or eating food and at any time that the hands look dirty. And, wash those hands as soon as you come home from school or, well, anywhere.
  • Use hand sanitizer in place of soap and water if no soap/water is available, but soap and water are preferred. Remember that hand sanitizer kills many germs, but only while it’s being rubbed onto the hands. Once it’s dry and the hand touches something germy even two seconds later, germs will live on the hands again.
  • Cough and sneeze into the crook of the elbow. Coughing and sneezing into tissues is OK, but not ideal. The tissues are thin and the germs blast right through onto the hands, requiring an immediate hand cleaning. Plus, the germs are more likely to escape the tissue and float around waiting to be inhaled, or drop onto surfaces, waiting to be touched.
  • Don’t share with others anything your mouth touches. This means don’t share forks, spoons, water bottles, food, drinking glasses, straws, lipstick or any other makeup, come to think of it, and don’t use anything that’s touched another person’s mouth, such as their pen or pencil or any item already listed. This is not a complete list, just one to get you thinking about how germs can be passed from one person to another.
  • Keep your hands away from your eyes, nose, and mouth, as these are entryways for germs.
  • Walk around your home with a disinfecting wipe and clean doorknobs (interior and exterior), light switches and the wall area around them if the wall surface will hold up to the moisture, keyboards, remote controls—anything around the house that gets touched a lot.
  • Call your provider and your child’s provider and make sure the entire family is up-to-date on immunizations.

Share your tips in the comment section. Let’s try to have a healthy school year!

 

By Trish Parnell

 

 





CDC – Working 24/7

20 04 2013

Welcome to NIIW!

Every 20 seconds, a child dies from a disease that could be prevented with a safe and effective vaccine. Millions more children survive, but are left severely disabled. Vaccines have the power not only to save, but also transform lives by protecting against disease – giving children a chance to grow up healthy, go to school, and improve their lives.  Vaccination campaigns sometimes provide the only contact with health care services that children receive in their early years of life.

Immunization is one of the most successful and cost-effective health interventions—it currently averts an estimated 2 to 3 million deaths every year in all age groups from diphtheria, tetanus, pertussis (whooping cough), and measles.

cdc blogImmunization is a global health priority at CDC focusing on polio eradication, reducing measles deaths, and strengthening immunization systems. CDC works closely with a wide variety of partners in more than 60 countries to vaccinate children and provide technical assistance to ministries of health to strengthen and expand countries’ abilities to create, carry out, and evaluate their national immunization programs.

Too few people realize that the health of Americans and the health of people around the world are inextricably linked. Viruses don’t respect borders, so they travel easily within countries and across continents. By helping to stop vaccine-preventable diseases (VPDs) globally, CDC is also helping to protect people in the United States against importations of VPDs from other countries.

For example, in 2011, there were 220 reported cases of measles in the United States—200 of the 220 cases were brought into the U.S. from other countries with measles outbreaks.

The most effective and least expensive way to protect Americans from diseases and other health threats that begin overseas is to stop them before they spread to our shores. CDC works 24/7 to protect the American people from disease both in the United States and overseas. CDC has dedicated and caring experts in over 60 countries. They detect and control outbreaks at their source, saving lives and reducing healthcare costs. In 2012, CDC responded to over 200 outbreaks around the world, preventing disease spread to the U.S.

CDC’s global health activities protect Americans at home and save lives abroad. They reduce the need for U.S. assistance and create goodwill and good relationships with global neighbors.

Thanks to the CDC for sharing this information.





Reporters – Follow The Science (Please!)

12 12 2012

Immunizations are a perpetually hot topic. We’ve been getting questions from reporters for over a decade about the need for vaccines, the efficacy of vaccines, and invariably the safety of vaccines.

Reporters have been doing stories on vaccines for a lot longer than a decade, but I remember 1999 as the year that things kicked off on the national scene. The television program ‘20/20′ ran shows featuring parents who claimed that various vaccines caused SIDS, multiple sclerosis, autism, and a variety of other illnesses in themselves or their children.

All these years later, when study after study after hundreds of studies have proven the safety of vaccines, many reporters still insist on representing the “other” side of the story when the subject is vaccine safety.

When I get a call from a reporter asking to speak to a parent whose child has been affected by a vaccine-preventable disease, I ask if they are also speaking to parents who believe their child has been adversely affected by a vaccine.

The answer is always yes.

The reporter will say that he or she just wants to present a balanced story.

After all of these years, and after all of these studies, I can’t help but wonder what their definition of balanced may be.

When I read a story about the importance of wearing a helmet when riding a bicycle or a motorcycle, there is often included in the story an anecdote about someone not wearing a helmet while riding who was consequently harmed by the lack of said helmet.

Never, in the same story, do I read about riders who were saved from harm by not wearing helmets, although I’m sure there are people in this world who believe it is safer to ride without helmets. For some reason, reporters don’t feel the need to present the anti-helmet point of view in order to have a balanced story.

The use of seat belts in cars has been mandatory in all states since the 1980s. When writing about car accidents, reporters frequently include stories about the injuries sustained when so-and-so was not wearing a seat belt.

I don’t believe I’ve ever read such a story where the reporter also highlighted incidents of those saved from harm by not wearing seat belts. I know of at least one person who firmly believes that not wearing a seat belt is safer than wearing one, but I have not yet seen her anti-seat belt view used to provide balance in a car accident story.

Reporters who include opinions from parents who believe their children were adversely affected by vaccines, and who include junk science from those pretending to be scientists, all in the name of having a “balanced” piece on vaccines, simply haven’t done their homework.

They are behind on the science, and the stories they write end up creating fear and confusion on the part of parents.

If a reporter feels that it is important to present views not substantiated by science, they should do an opinion piece rather than a news story.

At PKIDs, we sincerely appreciate those writers who look for and use the facts. As parents of children affected by disease, it’s easy for us to have lab work done and determine by the results that our child is infected with a particular disease.

If there is a vaccine to prevent that particular disease, we can say that it’s probable that, had our child been vaccinated, he or she would not have become infected. But, since not all vaccines work for everyone, we cannot say for certain. We can only talk about what vaccine-preventable diseases have done to our families.

We’re not painting all reporters with the same brush. Many reporters follow the science and come back with a fact-based story.

For those who do not, we ask that you make clear in your next story which parts are unsubstantiated, and which are based on fact.

Let’s stop the unnecessary scaremongering of the public.

 
By Trish Parnell





Why Vaccinate? I Never Get Sick!

5 11 2012

No matter your age, if you’re sitting in a moving vehicle you’re required to wear a seatbelt or to be in a size-appropriate car seat.

Most states require that anyone riding a bicycle or a motorcycle wear a helmet. And again, it doesn’t matter what age you are.

Kids going to public schools are required to be immunized against several diseases for school entry. How many immunizations they’re required to get depends on the state they live in, and the school they attend.

I suppose I could think up a few public health scenarios that would require adults to be immunized against a particular disease. But as a rule, unless our jobs require it, we adults are exempt from this particular requirement.

There are lots of protections in place for kids, as there should be. For instance, if I don’t feed my daughters, or provide adequate shelter for them, they’ll be taken away from me and placed in a foster home, where they’ll get the care they need. We need that oversight in place, so that no kids fall through the cracks. The heartbreak is that there are still kids falling through the cracks, but we do know that the oversights in place keep that number from being astronomical.

Most adults don’t need that kind of micromanagement when it comes to their health. But, they do need information. Before I became involved with PKIDs, I wasn’t even aware that there were vaccines for adults, other than the flu vaccine.

Now I know.

I don’t have time to get sick. I get vaccinated for me. I also wash my hands, try to get enough sleep, make myself eat green vegetables, and generally do whatever I need to do to keep myself healthy. But because I’ve met and talked with so many families affected by preventable diseases and I know how awful those infections can be, one of my motivations for getting vaccinated is so that I don’t accidentally infect someone else.

For example, it’s the infected adults and teens around babies who infect them with whooping cough, and it’s the infected birth moms who infect their newborns with hepatitis B. Babies infected with whooping cough can end up hospitalized, or worse. And babies infected with hepatitis B usually stay infected for life. This can lead to liver cancer or transplantation—if they’re lucky.

If you’re one of those people who never gets sick and figures you don’t need to be vaccinated—well, who knows, you might be right. But not getting sick is not the same as not being infected. You can and do pass on those germs to little babies who haven’t gotten all of their vaccinations yet, and others whose immune systems are not robust, for one reason or another.

So, you know where I’m going with this. Take just a few minutes the next time you’re at the pharmacy or your doctor’s office and ask what vaccinations you need. Do it for you, but also do it for the vulnerable in your life.

By Trish Parnell





London!

9 07 2012

Are you going to London for the OlympicsI lived in Calgary when the Games were held there. It’s chaos and fun and nothing like you’d expect, if you’ve never been.

You’ll meet people and germs from scores of countries—about 11 million people, to be specific, and each one teeming with his or her own microbes. Olympics health director Brian McCloskey says they’re ready to go and will be on the lookout primarily for GI bugs “and infectious diseases such as measles.”

Want to bring home souvenirs that won’t make you sick? Use this CDC piece as a checklist on staying healthy in London during the Olympics:

Be Up-to-Date on Your Jabs

Some illnesses that are very rare in the United States, such as measles, may be common in other countries. Make sure that you and any children traveling with you have had all shots. Even if you had all routine vaccines as a child, ask your doctor if you need a tetanus/diphtheria/pertussis booster.

Watch Out for that Lorry!

In the United States, you’re taught to look left, look right, and look left again before you cross the road. In England, however, they drive on the left side of the road. That means you should always look right, look left, and look right again to avoid stepping into the path of traffic driving on the left.

Get Thee to an A&E

If you get hit by a lorry, don’t call 911, call 999, and don’t ask to be taken to the ER, ask for the A&E (Accident and Emergency). Only call 999 in the event of a serious illness or injury. For cuts and scrapes, muscle strains, or minor illnesses, visit a pharmacy or walk-in center (no appointment needed). To find a pharmacy or walk-in center, visit www.nhs.uk/London2012  or call 0845-4647.

Note that the health insurance that covers you in the United States probably won’t cover you while you’re overseas, so you may have to pay out-of-pocket for any care you receive in London. Consider purchasing travel health insurance that will reimburse you for any costs you incur.

Go on Holiday (But Not from Healthy Habits)

Have a great time in London, and make sure you take your healthy habits with you:

  • Always wear a seatbelt.
  • Wash hands frequently, or use hand sanitizer.
  • Cough and sneeze into a tissue or your sleeve (not your hand).
  • When outdoors during the day, wear sunscreen, stay hydrated, and seek shade if you get too hot.
  • When indoors or at large events, know where emergency exits are.
  • If you drink alcohol, do so in moderation.
  • Use latex condoms, if you have sex.

Speak Like a Native

Some terms, including health-related terms, differ between British English and American English. Be familiar with these to avoid confusion if you need medical care.

British English/American English

  • A&E (Accident and Emergency)/ER (Emergency Room), ED (Emergency Department)
  • Chemist/Pharmacist
  • Consultant/Attending Physician
  • Giddy/Dizzy, Unbalanced
  • Gip (“My back is giving me gip.”)/Aches, Pains (“My back hurts.”)
  • Holiday/Vacation
  • Jabs/Shots, Vaccinations
  • Lorry/Truck
  • Loo/Restroom
  • Paracetamol/Acetaminophen
  • Plaster, Elastoplast/Elastic Bandage, Band-Aid
  • Surgery/Doctor’s Office
  • Surgical Spirit/Rubbing Alcohol

More Information

Thanks to CDC for excellent info, as always.

Image courtesy of Flickr user kh1234567890





Ask Emily

26 04 2012

What’s the deadliest infectious disease ever and what currently is the most deadly infectious disease?

The answer to this question is more complex than simply counting up numbers of people who die from infection. For example, diseases like measles and smallpox have proved to be far deadlier in some populations—such as Native Americans—than in others, because of population differences in disease resistance.

Another variable is intensity of the illness a pathogen causes. Influenza comes in many forms of virulence, and as the Spanish flu pandemic of the early 20th century made clear, even that virulence can vary depending on specific population features; the Spanish flu, which took an estimated 50 million lives, killed the young most relentlessly.

Even an individual disease vector can wax and wane in terms of how virulent it is or which tissues it invades. For example, Yersinia pestis, the bacterium responsible for the infamous Black Death that swept through Europe in the 14th century, may vary over time in its virulence and is far more deadly when transmitted as an aerosol to lung tissues than when it invades the lymph and causes the bubos that characterize it.

Another issue is, how do we calculate “deadliest?” Is it in terms of sheer overall numbers, or do we calculate it in terms of how many people it kills among the number infected? For the sake of addressing this question, let’s talk about both.

Historically, in terms of sheer numbers, the deadliest diseases were smallpox, measles, tuberculosis, plague (e.g., the Black Plague), and malaria. According to a handy Website, the Book of Odds, which calculates odds for us, measles has killed about 200 million people worldwide in the last 150 years and still kills hundreds of thousands in the developing world. Thanks to vaccines, the odds of contracting measles in the United States today are very low unless you are an unvaccinated person living in areas where vaccine uptake is low.

The story on smallpox is similar—it may have killed more people by percent or sheer numbers than any other infectious disease in history, including 300 million in the 20th century alone by some estimates. Yet smallpox as an infectious disease no longer exists thanks to its total elimination through vaccine campaigns.

Thus, along with the plague, smallpox and measles have, for millennia, been the historical killers of humans and would still be among the deadliest infectious diseases today were it not for vaccines. What we have left are some old killers on the list—tuberculosis and malaria—and a newer entity, HIV, the virus that causes AIDS.

We have yet to develop efficient vaccines against any of them. According to USAID, in terms of absolute numbers of deaths, AIDS kills the most people each year, with 2.8 million AIDS-related deaths in 2004, followed by tuberculosis and malaria.

Indeed, AIDS and tuberculosis are often co-conspirators in death, as infection with the HIV virus makes people 20 to 30 times more likely to develop active TB with TB infection. Research for vaccines against HIV and malaria has been feverish but as-yet incompletely successful, one reason these diseases remain the top global killers.

But what about the deadliest disease in terms of how many of infected people die? In the absence of effective treatment, HIV might be one candidate. But the ones that come first to mind are the viruses that cause fast-moving hemorrhagic fevers, such as the Marburg or Ebola viruses.

The Marburg virus, named for the location of the first outbreak and a virus that may reside without symptoms in fruit bats, has caused death rates as high as 90% in some areas, although the average is 23–25%. It is a filovirus, in the same viral family as the five Ebola viruses. One of the Ebola viruses, Ebola-Reston, is perhaps the most notorious of the hemorrhagic fever viruses, having led to death rates as high as 89% in outbreaks.

A near-100% mortality rate is about as deadly as an infectious agent can be if that’s the measure of “deadly” we’re using.

By Emily Willingham

Image courtesy of Wikimedia Commons





Telling Our Kids They’re Infected With Hepatitis or HIV

16 01 2012

If hearing your child is infected with HIV or hepatitis B or C is the worst that can happen to a parent, telling your child about the infection runs a close second.

When should a parent disclose? How should they tell them? What will a child ask? Will they ever forgive the parents who infected them? Are silence and secrecy justified to protect a child from a painful diagnosis?

Two pioneers who have peered into the disclosure cauldron are Lori W. Wiener, coordinator of the Pediatric HIV Psycho-Social Support and Research Program at the National Institutes of Health, and Heidi Haiken, coordinator of Social Work at the Francois Xavier Bagnoud Center in Newark, N.J., an innovative program that works with parents and children with HIV.

For more than 10 years, Haiken and Wiener have worked with hundreds of families infected with and affected by HIV on the emotional and social issues related to the disease. Wiener, who has a PhD, has researched and written about the impact of disclosure on family members.

Their combined experiences have produced two cardinal rules for parents of children infected with chronic, viral infectious diseases:

  1. Never lie. You don’t have to name the disease if children are very young, but never, never lie. The damage to the parent-child relationship will surpass any short-lived benefits gained by deceit.
  2. Disclose as early as you can, especially once kids start asking questions. The longer you wait, the harder it gets and the greater your chance of undermining your child’s trust in you.

“We even tell parents who come to the center that if they don’t tell the kids by the time they reach sexual maturity, we will,” Haiken said. “But of course it’s much, much healthier to have this information come from the parents.”

Both women acknowledge that disclosing is very traumatic for parents. “For some parents, it’s just devastating,” said Haiken. “They feel guilt because they infected the child because of their past sexual behavior or drug use. They feel guilt that the child has to suffer. Even for parents of children who contracted it from transfusions or are adopted, disclosure is extremely difficult.”

Wiener, who has written several research papers on this topic, found the longer parents withheld the diagnosis, the more embedded the lies became and the harder it became to disclose the truth. “Parents often fear that once they disclose new and different information, that their child will no longer trust them,” she said. “Following disclosure, many of these children feel embarrassed that other people in their family have been aware of the diagnosis before they had been informed. Once disclosure takes place, these issues and feelings can be successfully dealt with in individual and group counseling sessions with parents and children.”

Haiken and other social workers at the center work hard to help parents work through their guilt, or at least face it without flinching, before they disclose.

“I tell them you didn’t mean for this to happen, it’s clear you never wanted to hurt your child, look at all the wonderful things you’ve done for your child,” said Haiken. “After a while they get there, they see it, but it’s still very difficult. No parent ever wants to infect her child. It’s something they felt they had no control over.”

In terms of disclosure, parents who are themselves living with HIV have additional challenges to face. They fear disclosing their own life-threatening disease to their children. But generally, says Wiener, by the time children reach ages 6 to 10, they realize the consequence and finality of death. It is useless to shield children this age from the knowledge that their parents have a serious or terminal illness.

The disclosure process, timetable and style are often dictated by the parents’ health. Can they focus on their kids and execute disclosure, or are their own health problems overwhelming? Are they getting the support and time they need or are their own medications, insurance forms and other factors too overwhelming?

“Foster or adoptive parents have the luxury of not having to worry about their own illnesses, so the emotional and financial stress on the entire family may not be as intense,” noted Haiken.

The journey to disclosure begins early, says Wiener. “The child and parent should first have a sense of trust—that is the highest priority.” Disclosure occurs little by little in age-appropriate ways as soon as a child can communicate. Just like talking about adoption, it’s always on the table, though not all the details or medical terms may be exposed just yet.

Ideally, when the parent discloses the conversation should go something like this, suggests Wiener.

“Do you remember when I told you that you had a germ in your blood? That’s why we have blood work done every year. (And) Do you remember I told you that you got the germ from blood? Well, that germ is a virus that is called HIV or hepatitis….”

“You see, the disclosure dialogue is a constant building process,” she said. “If the child asks why the parent didn’t tell them earlier, the parent needs to be able to say, ‘I never lied to you, I told you what was wrong, I just hadn’t told you name of the virus.”

It may take a child weeks, months or years to absorb the diagnosis. “Try to be where the child is at when they ask questions,” wrote Wiener. “Let the child know that no matter how difficult the subject matter, he or she can always ask questions or share feelings. Be careful, however, not to provide more information than the child wants or is prepared for. They may not be ready for a virology discussion.

“You never want to be in the position of telling a 12 year-old about his or her disease that you have never even referred to before,” she added. “That is my main concern in the disclosure process. We’ve interviewed a lot of children who have been disclosed to. Most felt they had been told at the right age and by the right person except those whose parents had a doctor tell them. Those were the only kids who remained upset about the disclosure process.”

At NIH, counselors work intensely with parents of HIV-infected children to prepare them for the disclosure discussion. Social workers even have parents write out what they will tell their children and then play the part of the child in role-play situations. Generally, parents should be prepared to answer the following questions, depending on the child’s age and development. (Some questions apply if the parent is infected also.)

Why did this happen to you?

Where did you get it from?

Are you going to die?

Am I the reason you got sick?

Who else in the family has it?

Why do I have it?

Why don’t (siblings) have it?

Am I going to die?

Will this hurt?

Who else knows I have this?

Who can I tell?

What will happen to me and (siblings)?

Can I get married?

Can I have children?

Here are some general guidelines Wiener has identified for parents to consider as they prepare for the disclosure discussion.

Where do you want to make the disclosure and who should be part of the discussion?  

“You don’t want to have a ton of people there, just those whom the child trusts and feels most comfortable with,” cautioned Wiener. “Try to anticipate the child’s response based on his or her emotional age and maturity. Be careful never to disclose when you’re angry, or during an argument. Have the discussion in a safe, comfortable environment.”

What is the most important message you want your child to walk away with from this discussion?  

Possibilities include: Nothing is going to change… I am just now giving you the name of the virus… We will always be there for you… I will never lie to you… Nothing you did caused this disease.

How exactly will you disclose the actual diagnosis?  

“We have parents write out how they’d like it to happen, and they always start out with, ‘Do you remember?’ Weave in pertinent aspects of the child’s life and pick up the threads of your past discussions about infections,” suggested Wiener. “Rehearse the questions and answers, including ‘How did I get it? Can I get married? Can I have kids? Who else knows about it?’”

If the diagnosis is to be kept secret, who else can the child talk to?  

“If parents tell a child not to tell anyone, the first thing a child will do is go tell someone,” said Wiener. “They’ll feel resentful if they have no one to talk to. Parents need to find others in the community for the child to talk to. If there isn’t anyone nearby and the child wants to tell his or her best friend, I would tell them to talk with me, the parent, first. I would explain that not everyone is as educated as we are, and it’s important that we make a plan and educate the friend about this infection first. After all, we don’t want anyone to treat us badly.”

Give child a journal or diary or a way to express their feelings about the infection.  

Encourage the child to use art or writing to express feelings. “If HIV had a face, what would it look like? Or start a discussion with, ‘If I had a million dollars, I would get rid of this virus. What would you do with a million dollars?’ Keep those discussions going,” Wiener suggested.

“It is usually not until days or weeks after disclosure that the child has the courage to ask more questions,” she added. However, after finally making the disclosure, some parents feel so relieved and so exhausted from the ordeal that they may not have the emotional energy to talk about it again. This blocks open communication at a time when sharing concerns about the disease and its impact on the family is most important.

Red flags to look for in a child following disclosure.  

These include difficulty sleeping, changes in appetite, withdrawal, ticks, new fears, mood changes, difficulty concentrating or hoarding things.

If you see any such problems, talk to your child and if necessary, seek help from a social worker or psychotherapist. Remember, disclosure is not a one-time event and a child needs constant reassurance that they did not cause the disease.

Don’t forget siblings in the disclosure process.

Whether or not a sibling is told depends on age, said Wiener. “If the sibling is close in age, I don’t make it a choice, the sibling must be told. But, I do give them a choice of whether the infected child tells the sibling or if the parents tell the sibling. You need to give the child a sense of control. Living with secrets in the home does not promote a healthy emotional climate. I try to minimize the amount of secrets or lying that’s going on. However, if there’s a medical procedure or if they’re on interferon which makes them grouchy, it’s important that siblings know why.”

Even after disclosure is made, the full reality of the diagnosis may not come about for years. “It may not be until someone dies, or they get sick for the first time or they can’t go to a party and drink like everyone else that the reality really sinks in,” said Wiener. “At that point, it becomes an emotional reality, not just an intellectual reality.”

Wiener finds most parents do feel relief after making disclosure. The burden of secrecy is lifted, and children who already intuitively know something is wrong often feel better after they are told of their diagnosis. Siblings, especially if they are older, are also relieved when the veil of secrecy is lifted.

“The demands of keeping the family secret is a heavy burden for a young sibling and may threaten healthy development,” Wiener wrote in a study of siblings of HIV-infected children. “As inquisitive peers begin asking siblings why their brother or sister is sick, it becomes increasingly difficult not to tell the secret. One 9-year-old girl describes: ‘I want to tell people. Right when I almost say it, I remember in my head I’m not allowed to.’”

Resentment of the special treatment given to the sick sibling may cause the healthy sibling to feel less loved, Wiener explained, particularly if no explanation for the preferential treatment is provided.

Heidi Haiken, who has worked with more than 400 HIV-infected kids, has found disclosure to be beneficial to parents and kids alike. “By and large, the kids do well and are glad they’ve been told,” she said.

But disclosure is just a step in the journey. Parents must be prepared to ask, probe and continue the dialogue about health safety, standard precautions, medical treatments, good nutrition and the fundamentals of safer sex with their infected children.

“In our program, we start teaching safer sex at age 10 to 13,” said Haiken. “We give out condoms, talk about masturbation and how to keep yourself and your partner safe. We don’t deny they’re sexual beings, we focus on how to be safe with it, how drugs and alcohol can make you do things that aren’t safe.”

That safer sex discussion is just one more elaboration on the discussion that began when parents tell their infected toddlers never to touch anyone’s “boo-boos.”

Most parents of infected children and teens don’t have a Heidi Haiken or Lori Wiener in their hometowns. And, they can’t count on local schools to teach standard precautions or to delve into the nitty gritty of safer sex procedures. Most parents must be open and honest as they continue these discussions, no matter how painful or awkward, throughout their children’s lives.

By PKIDs staff