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There’s a lot to think about when you find out you have autosomal dominant polycystic kidney disease (ADPKD).

When do you start treatment?

Will your everyday life change?

How will it affect your children?

The latter can be really tough. But Jillian Warejko, MD, a pediatric kidney specialist at Yale Medicine, says it’s important for children to learn what to expect.

“It’s very important to know your own health history,” says Warejko. “So what we’re trying to do is teach kids to empower themselves and stand up for themselves.”

You should tailor your conversation to your child’s developmental age. And maybe you want to spread your conversations out over a longer period of time.

Here are some topics to get you started.

how to get it

If your kids are teenagers or young adults, you can break down the basics of this autosomal dominant genetic disease. Warejko explains that a faulty gene on a non-sex chromosome causes ADPKD. That means whether your child is male or female, there is a 50 percent chance they will get this mutated gene from you. And if they have the disease, there’s a 50% chance they’ll pass it on to their children.

You may need to give less information to younger children. You can still invoke ADPKD. However, use age-appropriate terms that are not scary.

“They don’t want children to be scared,” says Warejko. “Fear can make people reluctant to go to the doctor.”

In her practice, Warejko describes ADPKD as follows:

“It sounds like some family members have had this condition called kidney disease. And the reason you’re visiting me today is because we want to make sure that if you also have kidney disease, we’re doing everything we can to make sure you stay as healthy as possible.”

She also tells the children that it’s best to treat this disease early, when their kidneys are “good” and still functioning normally. And the best way to do that, she says, is “to make sure you check in with us.”

Symptoms to look out for

If your children have ADPKD, they may not have problems when they are children or young adults.

“The disease can be relatively quiet in these early years,” says Neera Dahl, MD, PhD, a kidney specialist at Yale Medicine.

With that in mind, Dahl thinks parents and kids should know what to look out for.

Tell your child to speak up when they notice:

  • back or side pain
  • Blood or pain when peeing
  • Any other urinary changes
  • Regular headaches

Encourage your kids to keep track of their health records.

“If the doctor tells you that your blood pressure is a little high, write that number down,” says Warejko. “Everyone has a piece of ‘paper’ everywhere because our phones have ‘notes.'”

You can also share how the disease makes you feel. But remember, your child may not have the same experience.

“The difficult thing about ADPKD is that everyone is a little bit different, even among family members,” says Warejko. “But I always encourage families to be open with one another.”

When and how to diagnose

Children may only need regular spa visits once a year. However, your doctor should watch for high blood pressure or blood in the urine.

“If those are off, that’s a reason to investigate further,” says Dahl. “Other than that, it’s okay to monitor kids to see how they’re doing.”

Warejko emphasizes the importance of annual checkups in the late teens and early 20s. Sometimes young adults who may have ADPKD skip these screening tests, she says, because they feel healthy. Although they could have high blood pressure or cysts and not know it.

“The hardest thing about kidney disease is that you don’t feel it until you feel it,” she says.

To diagnose ADPKD you may receive:

Imaging tests. The most common is an ultrasound, Dahl says. It’s a painless test that can take pictures of the urinary tract or kidneys. Other imaging tests include computed tomography (CT) or magnetic resonance imaging (MRI).

genetic test. This is a surefire way to tell if you have ADPKD. But it may not be the right choice for everyone, especially young children. “There’s a lot of debate about what it means to genetically test someone under 18 when they’re not of an age where they can fully agree,” says Warejko. “Not everyone wants to know what their genetic makeup is.”

Ask your doctor to refer you to a genetic counselor. They can help you figure out if this is something you or your family would want to do.

Screening before implantation. This is for your adult children who want to start a family. People using in vitro fertilization (IVF) can be given a special test to check for ADPKD in fertilized eggs. It’s not 100% accurate. But it may be a choice for people who want to take steps to reduce their chances of passing on the gene, Dahl says.

set a good example

You can teach your kids some healthy habits to protect their kidneys. If they ask why, tell them you want to help them achieve their goals. That’s what Wareiko does. She asks children what they want to be when they grow up. Then she tells them, “I want you to be successful, and part of that is being healthy.”

Her tips include:

  • Drink plenty of water.
  • Eat a low-salt diet.
  • Make sure you have enough physical activity.
  • Eat lots of fresh fruits and vegetables.
  • Avoid processed foods and fast foods.

Warejko knows that making these healthy changes isn’t easy for everyone. Some families may not have access to fresh produce or live in a neighborhood where it is safe to walk. That’s why she tries to brainstorm with children and parents. She helps them find ways to get healthy food or exercise in their homes. “I’m trying to specifically ask, ‘What restrictions do we need to have to work indoors?'”

Living with ADPKD

Treatment has come a long way in recent years. In 2018, the FDA approved tolvaptan (Jynarque), the first drug to treat adults with ADPKD. It can slow down the formation of cysts on the kidneys.

“I think tolvaptan will change the course and we won’t see as many people with kidney failure,” says Warejko. “I hope the snowball keeps rolling downhill.”

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