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Childhood Alzheimer's: 4 things you need to know
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These are the things every parent should know. - photo by Melinda Fox
Imagine your little one forgetting the things she just barely mastered: the ability to feed herself, identify shapes and letters, and to walk and talk. You had hope that she'll live a long life before going through the challenges of a declining mind and body but for kids with "childhood Alzheimer's" these effects come sooner.

Officially titled "Sanfilippo syndrome," "childhood Alzheimer's" is so nicknamed because its symptoms mirror Alzheimer's disease. Since most parents are unaware of Sanfilippo syndrome, and therefore unable to recognize it. To make sure you aren't one of those parents, here are a few things you should know:

Sanfilippo is passed through parents

Sanfilippo is an inherited disease, meaning it is caused by gene mutations and passed to a child through parents' DNA. Specifically, Sanfilippo syndrome is autosomal recessive which means that two copies of the abnormal gene (the gene causing the disease) must be present in order to cause Sanfilippo. If both parents are carrying the mutation, the child has a 25 percent chance of having Sanfilippo syndrome.

If you think that you and your spouse may be a carriers of Sanfilippo, consider seeing a a genetic counselor so you can be aware of your child's chances of being born with Sanfilippo.

Symptoms generally arent apparent until age one

Usually, symptoms of Sanfilippo arent obvious for about a year. Occasionally an infant with Sanfilippo will have a bigger head than average but this isnt always the case. In general, children with Sanfilippo develop normally for a couple of years. Usually it's not until around age two or six that children with Sanfilippo begin missing developmental milestones, making their disease apparent.

Symptoms mirror Alzheimer's

As is apparent from its nickname, Sanfilippo syndrome is similar to Alzheimer's disease. Sanfilippo usually begins to be manifest through behavior issues, excessive activity and sleeplessness. Also, early on, children with Sanfilippo often get diahrrea, sinus infections and ear infections. Over time, kids with "childhood Alzheimer's" lose their ability to form words and sentences, eat on their own, walk and talk.

There is not a cure yet

Although there are some cases of people with Sanfilippo surviving into their thirties, most children with Sanfilippo Syndrome die in their late teens.

However, doctors are working to find a cure. In fact, several potential cures have already moved towards trial. You can help by donating to organizations that are researching cures, advocating for legislation that enables organizations to research cures, spreading awareness and offering support to families affected by this disease.
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How to avoid 'sharenting' and other paparazzi parenting habits
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A recent study revealed parents often spend up to two hours staging a single photo of his or her child to post online. - photo by Amy Iverson
Before having kids, some people just dont appreciate their friends baby posts. But after having a child of their own, three fourths of new parents jump right on the parental social media bandwagon. If you have become a member of this group, there are some rules to follow for posting responsibly.

Much of a parents worry is how to teach their children to use social media responsibly. We talk with our kids about privacy, oversharing, and setting restrictions on their devices to keep them safe. But parents themselves need to look in the digital mirror once in a while. Before having children, it doesnt take as much effort to think about what to post online. Its up to us to decide what we share about our own lives. But once you become a parent, there are many questions to think about regarding what is appropriate to post about your kids on social media.

In a recent survey, kids clothing subscription company Mac and Mia surveyed 2000 new parents to find out how they are documenting their kids lives on social media, and what concerns they may have.

First of all, people without children seem to feel a bit differently about the onslaught of baby pictures online than those who are parents. 18 percent of people say before they had kids, they were annoyed by their friends baby posts. But after having children of their own, 73 percent admit they post progress pictures of their little ones every single month.

Not only are new parents letting the world know each time their baby is a month older, but they are posting about their kids every few days or so. Men and women report they post 6-7 times per month about their baby.

And while 70 percent of new parents say the benefit of using social media is how easy it is to help family and friends feel involved, there are some downsides. Here are a few tips to avoid the pitfall of becoming paparazzi parents.

Dont miss the moment

In the Mac and Mia survey, some parents admitted to spending up to two hours to get the perfect shot of their baby. That seems a little extreme. New and old parents alike should be careful about spending so much time taking pictures and videos that they dont enjoy the moment. Years ago, I decided to never live an experience through my phone. A study by Linda Henkel, a psychology professor at Fairfield University in Connecticut, found that when people took pictures of objects in an art museum, they didnt remember the objects as well as if they simply observed them.

This photo-taking impairment effect can happen to parents as well. If we are so consumed by getting the perfect photo, we can miss out on the moment all together, and our memory of it will suffer.

Dont forget about privacy

60 percent of couples say they have discussed rules and boundaries for posting their babys photos, according to the Mac and Mia survey. Even so, men are 34 percent more likely to publish baby posts on public accounts. If parents are concerned about their childrens privacy, keeping photos off of public accounts is a given.

In the Washington Post, Stacey Steinberg, a legal skills professor at the University of Florida, and Bahareh Keith, a Portland pediatrician, wrote that sharing too much information about kids online puts them at risk. They write that all that sharenting can make it easier for data thieves to target out kids for identity theft. Check that your privacy settings are where they should be and never share identifying information like full names and birth dates.

Dont be paparazzi parents

36 percent of parents say they take issue when their childs photo is posted online by someone else. Responsible social media users will always ask permission before posting a photo of another child. But parents should also think about whether their own children will take issue with their own posted photos a few years down the road.

When parents are constantly snapping pictures and throwing them on social media, it can be easy to forget to pause and make sure the post is appropriate. I always use the billboard example with my kids. I ask them to picture whatever they are posting going up on a billboard in our neighborhood. If they are okay with that, then their post is probably fine. Parents should ask themselves this same question when posting about their children. But they should also ask themselves if their child would be OK with this post on a billboard in 15 years. If it would cause embarrassment or humiliation, it might be best to keep it private.

Once children reach an appropriate age, parents should include them in the process of deciding what pictures are OK to post. Researchers at the University of Michigan surveyed 10- to 17-year-olds and found children believe their parents should ask permission more than parents think they should. The kids in the survey said sharing happy family moments, or accomplishments in sports, school and hobbies is fine. But when the post is negative (like when a child is disciplined) or embarrassing (think naked baby pictures or messy hair), kids say to keep it off social media.
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