The Informed Parent

28 03 2016

The Informed Parent is about to hit the streets, and it’s perfect for parents and parents-to-be.

Science writers Tara Haelle and Emily Willingham, PhD, pooled their strong individual talents and produced “a science-based resource for your child’s first four years.”

It is definitely that, and wow, what a resource.The Informed Parent

I got my hands on an advanced copy and started flipping through it last night. It’s a condensed encyclopedia covering everything from Accutane to marijuana, and poky labor to vasospasms.

Are you concerned about childhood obesity and diabetes? These days, that’s not an irrational worry. Haelle and Willingham interviewed experts in the field, dug deep into available research, and then broke it all down for us so that we can understand the science and make informed decisions for our kids. Well, it is aptly named The Informed Parent.

Are you breastfeeding and find you have, oh, about nine million questions? Tongue-ties and lip-ties are discussed, D-MER (dysphoric milk ejection reflex) is explained, and secondary lactation insufficiency is explored, along with so many other issues that can crop up about or around breastfeeding.

This book covers your child from the time he or she was a wishful thought in your head through gestation, birth, infancy (possibly the scariest time for new parents), solid foods, crawling, walking (waddling, really), sunscreen and mosquito repellent, air pollution, TV, mobile devices, discipline, toilet training (we all have our favorite toilet stories, don’t we?), preschool, and, well, it’s easier if you simply read the book.

It’s 309 pages of reliable, science-based information.

This is my new gift for parents of young ones, and parents-to-be.

 

 

by Trish Parnell





Travel in Good Health – Part 2 of 3

25 07 2014

All the prep and stress of getting out your front door is over. Now it’s fun, sun, and bugs.

Wait. What?

Oh yes, wherever your journeys take you, you can be sure that pesky critters will be flying or crawling around, biting, stinging and more…so much more.

Some bugs carry certain diseases, such as West Nile virus, malaria, dengue and others. Whether you’re in Napa Valley, the Sahara or the Alps, there are steps you can take to avoid infection.

  • Use an insect repellent on exposed skin to repel mosquitoes, ticks, fleas and other arthropods. EPA-registered repellents include products containing DEET (N,N-diethylmetatoluamide) and picaridin (KBR 3023). DEET concentrations of 30% to 50% are effective for several hours. Picaridin, available at 7% and 15 % concentrations, needs more frequent application.
  • DEET formulations as high as 50% are recommended for both adults and children over 2 months of age. Protect infants less than 2 months of age by using a carrier draped with mosquito netting with an elastic edge for a tight fit. There are DEET-free solutions available, but check with the pediatrician for a final recommendation. Protection against mosquito bites is the goal.
  • When using sunscreen, apply sunscreen first and then repellent. Repellent should be washed off at the end of the day before going to bed. Put repellent only on exposed skin and/or clothing and don’t apply repellent to open or irritated skin. Don’t let children handle the repellent. Rather than spraying it directly on children, adults should apply it to their own hands then rub it on the children. Don’t get it near a child’s mouth, eyes or hands and don’t use much around a child’s ears.
  • Wear long-sleeved shirts which should be tucked in, long pants, and hats to cover exposed skin. When you visit areas with ticks and fleas, wear boots, not sandals, and tuck your pants into your socks.
  • Inspect your body and clothing for ticks during outdoor activity and at the end of the day. Wear light-colored or white clothing so ticks can be more easily seen. Removing ticks right away can prevent some infections.
  • Apply permethrin-containing (e.g., Permanone) or other insect repellents to clothing, shoes, tents, mosquito nets, and other gear for greater protection. Permethrin is not labeled for use directly on skin. Check label for use around children. Most repellent is generally removed from clothing and gear by a single washing, but permethrin-treated clothing is effective for up to 5 washings.
  • Be aware that mosquitoes that transmit malaria are most active during twilight periods (dawn and dusk or in the evening). Stay in air-conditioned or well-screened housing, and/ or sleep under an insecticide-treated bed net. Bed nets should be tucked under mattresses and can be sprayed with a repellent if not already treated with an insecticide.
  • Keep baby carriers covered with a mosquito net.
  • Daytime biters include mosquitoes that transmit dengue and chikungunya viruses, and sand flies that transmit leishmaniasis.

Don’t forget to come back for Part 3, where we talk about more fun times for traveling parents.

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Travel in Good Health – Part 1 of 3

24 07 2014

[Editor’s note: We posted this a few years ago, but find the info timely, so what the heck, we’re running it again! Parts 2 and 3 run 25 and 26 July.]

Traveling with children, no matter their age, can be a joyful, tiring, exciting, and exhausting endeavor. Traveling with children who get sick on the trip is just plain exhausting and, sometimes, exciting in a way that we don’t want to experience.

Although dealing with illness in the midst of a family trip isn’t ideal, you can take steps to prevent illness before traveling and equip yourself with supplies to make the treatment of illness easier and more comforting.

Prevention is key, and no one does that better than the CDC. This article captures some tips for traveling families from CDC’s website, and a few other places.

If anyone in your travel group has an existing condition that may affect his or her health, it’s important to discuss travel health safety with a healthcare provider.

If you’re traveling outside the United States and you love detail, download a copy of CDC’s Yellow Book . It’s written for healthcare providers, but many people find it useful. Wherever you’re traveling, these suggestions may help you and yours avoid infectious diseases on the road.

There are steps you can take prior to departure that will protect you and your kids, and many things you can do while traveling. First, the pre-departure list:

Time Zones and Rest

If you’re changing time zones, spend a few days just before travel adjusting your sleep/wake periods to match the destination’s time zones. When you arrive, get out during the sunny periods so that you body realizes it’s time to be awake. Good sleep is critical to good health. Make sure everyone gets lots of rest a few days before and then during the trip.

Vaccinations

You and your kids should be up-to-date on currently recommended vaccines in the U.S.

If you’re traveling outside the United States, you need to check the destination country for recommended vaccines for you and your children, and if you have special health concerns, you need to determine which vaccines to get and which you should not have. Not all vaccines recommended for international travel are licensed for children.

Health Notices

If you’re traveling outside the U.S., read the CDC’s Health Notices first to get the latest updates on infectious diseases in various areas of the world. What you learn may affect your travel plans.

First Aid Kits

Prepare a first aid kit for the trip or purchase one from a commercial vendor. This is a sample list, as not all destinations require the same things.

  • 1% hydrocortisone cream
  • Ace wrap
  • Acetaminophen, aspirin, ibuprofen, or other medication for pain or fever
  • Address and phone numbers of area hospitals or clinics
  • Adhesive bandages
  • Aloe gel for sunburns
  • Antacid
  • Anti-anxiety medication
  • Antibacterial hand wipes (including child-safe) or alcohol-based hand sanitizer containing at least 60% alcohol
  • Antibacterial soap
  • Antibiotic for general use or travelers’ diarrhea (azithromycin, cefixime)
  • Antidiarrheal medication (e.g., bismuth subsalicylate, loperamide)
  • Antifungal and antibacterial ointments or creams
  • Antihistamine (such as Benadryl)
  • Antimalarial medications, if applicable
  • Anti-motion sickness medication
  • Commercial suture/syringe kits (to be used by local health-care provider with a letter from your prescribing physician on letterhead stationery)
  • Cotton-tipped applicators (such as Q-tips)
  • Cough suppressant/expectorant
  • Decongestant, alone or in combination with antihistamine
  • Diaper rash ointment
  • Digital thermometer
  • Epinephrine auto-injector (e.g., EpiPen), especially if anyone has a history of severe allergic reaction. Also available in smaller-dose package for children.
  • First aid quick reference card
  • Gauze
  • Ground sheet (water- and insect-proof)
  • High-altitude preventive medication
  • Insect repellent containing DEET (up to 50%)
  • Latex condoms
  • Laxative (mild)
  • Lice treatment (topical)
  • Lubricating eye drops
  • Malaria prophylaxis and standby treatment, as required by itinerary
  • Medications that the child has used in the past year
  • Moleskin for blisters
  • Mosquito netting, if applicable
  • Oral rehydration solution (ORS) packets
  • Personal prescription medications in their original containers (carry copies of all prescriptions, including the generic names for medications, and a note from the prescribing physician on letterhead stationery for controlled substances and injectable medications)
  • Safe water
  • Scabies topical ointment
  • Sedative (mild) or other sleep aid
  • Snacks
  • Sunscreen (preferably SPF 15 or greater)
  • Throat lozenges
  • Tweezers
  • Water purification tablets

Discuss with your family’s pediatrician any special needs your children might have that require you to prepare beyond this basic list. Also, your pediatrician may be able to give you sample sizes of antibiotics and other meds that may be useful for your kit.

Health Insurance

Before traveling, check your health insurance policy to see what it pays for. It will probable reimburse you for most of the cost of emergency medical care abroad, excluding any deductible or co-payment. For non-emergency care overseas, you may be covered, but check with your health plan about this before you leave home. Failure to get authorization may mean denial of reimbursement.

Travel Regulations

Check travel regulations and carry what you can onboard the plane, particularly prescription medication. Put the rest in your checked baggage. Put your first aid kit in a fanny pack or backpack that you take with you everywhere you go. There’s no sense bringing the kit if you don’t have it when you need it.

Now that you’ve done your pre-departure prep, stay tuned for Part 2 for some tips on problems you may encounter on the road.

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Oops Not Acceptable!

5 08 2013

One of the many reasons our family likes to stay out of hospitals is to avoid nosocomial infections.  Those are infections you get while you’re in the hospital (not what sent you to the hospital in the first place).

And there are other reasons to steer clear of hospitals.  Do you recall the study in the April 2008 issue of Pediatrics that tells us one out of 15 hospitalized kids are harmed by hospital errors, including mix-ups of medicines, bad drug reactions and overdoses?

As parents, we ask of no one in particular and everyone in general:  What are we supposed to do?  We want to take our sick or hurt children to a place that will, at the bare minimum, do no harm, and in theory, do some good.  But the risks associated with a hospital stay are pretty serious.

The National Initiative for Children’s Healthcare Quality worked on a tool that helped investigators get a more accurate count of numbers of children harmed while in the hospital.  Prior to the use of this tool, the count of children harmed by hospital error was much lower because errors were supposed to be voluntarily reported, and we now know that wasn’t happening.

I can accept the fact that no one is perfect, but the bar for standard of care is pretty low.  As our children’s advocates, we have the responsibility to insist that bar be raised.

Hospital staff: please worry less about political fall-out and more about doing what you have to do to stop mistakes from occurring, or worse, reoccurring.  And strive for transparency – it will relieve unnecessary suspicion and mistrust on the part of patients and their families and will serve to keep everyone working toward an error-free environment.  Ask questions, involve the family in patient care, stay focused on the tasks at hand, and communicate thoroughly with those taking over your patients when shifts change.

Families: as much as possible, stay with your loved one in the hospital and ask questions about everything that is being done. If something doesn’t seem right, don’t be afraid to ask about it. If someone’s feathers get ruffled because you ask questions about what they’re doing, just remember: better that than a mistake.

 

By Trish Parnell





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





Vaccine Education Center

28 04 2011

Dr. Paul Offit, Director, VEC

The science of vaccines can be . . . daunting. The lists of ingredients and potential side effects make us want to second guess ourselves and our children’s providers. We need to be sure we’re making safe choices.

And the complicated schedules! They’re enough to make sane people pound their heads.

The folks at the Vaccine Education Center (VEC) at Children’s Hospital of Philadelphia have a gift for presenting the complexities of vaccines and attending issues in a way that’s easy to understand yet comprehensive in scope.

The VEC website has a special section for parents and adults of all ages.  While there, you can sign up for the Parents PACK newsletter to get monthly immunization updates.  In the March issue, there’s a timely post on measles and the dangers of rubella parties.

You’ll also find age-specific information on vaccines and the diseases they prevent. There are FAQs, but if you can’t find your question, you can send it in via a form provided on the site.

The VEC has created a library of educational materials on specific vaccines and commonly asked questions. These resources range from information sheets to more consumer-friendly bookmarks and brochures.

They also maintain essential tools, including vaccine schedules, facts about vaccine preventable diseases, and the latest in vaccine science.

To keep information fresh, the VEC pens a monthly “Ask the VEC” on a myriad of topics.

Starting in 2011, the VEC will present three or four webinars a year addressing evolving issues, recent ACIP meetings, new science and media reports.

There are layers and layers of information available on the website, for those of us who feel more is better.  And what parent doesn’t?

The VEC staff constantly works at sifting vaccine fact from fiction and explaining the difference in ways we can all understand.  If you have questions, they’re worth checking out.





Spring Has Sprung, & so Have the Microbes

4 04 2011

Photo Credit: James Gathany, CDC

“Sweet spring is your time is my time,” wrote poet e.e. cummings. It also happens to be the time for ticks that harbor the bacteria that cause Lyme disease, and sweet springs that harbor Giardia lamblia, an intestinal parasite guaranteed to get your intestines roiling.

Beautiful weather and warming temperatures draw people to the great outdoors, where they’ll put hiking boot to path in many places where these threats lie in wait. Borrelia burgdorferi, the bacterium responsible for Lyme disease, lurks in the blood of two of its hosts, mice and deer. Ticks take up the microbe along with their blood snack, and when they snack on you, the microbe transfers along with some tick saliva. Ewww.

While you are most at risk of encountering a Borrelia-toting tick in the northeastern United States, the ticks that carry it live throughout the country, anywhere their hosts and good weather await.

If you find a tick, gently tweeze it out by grasping it near the head (that old “match to the tick” solution will only singe your body hair). Watch for the telltale signs of a Lyme infection, which can include a bullseye rash that forms around the bite. Note also that you can pick up a tick bite not only from hiking or hunting where ticks occur, but also from walking in tall grasses, gardening, or from a pet that’s carrying them around.

If a tick bites you, keep an eye out for symptoms for 30 days. The good news about Lyme is that most people with tick bites don’t develop it, and an antibiotic treatment will usually take care of the disease if you do get it.

Ticks can be practically invisible and difficult to avoid in some places, but you can always be careful about the water you drink. And careful you should be, because in many of the most beautiful places in the U.S., swimming in that cool mountain stream is a nasty little pathogen, Giardia lamblia. While it has been associated with food-borne outbreaks and oro-genital contact, in the wild, this unwelcome microscopic protist emerges from the intestines of woodland creatures via poop to end up in water sources.

If you drink that water without filtering it first, using a water filter that keeps G. lamblia out of your mouth, you’ll swallow Giardia cysts along with that cool drink. Giardia will take advantage of the homey environment of your intestines, and in a week or two will start reproducing. Your end of the bargain is debilitating intestinal symptoms that can last for weeks. Treatments are available, but giardiasis can often resolve on its own, if unpleasantly.