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Sickle Cell Disease

Sickle-cell is an inherited disease. It is a blood disease caused by inheriting the gene from both your mother and father. A person is thus born with Sickle-cell disease.

You can be a carrier of the gene and not have the disease. If only one parent has the gene they can pass the gene on to their children. A child who inherits only one gene for Sickle-cell becomes a carrier of the disease but does not have the actual disease.

Sickle-cell is when the red blood cells are misshapen. Rather than round concave, convex smooth shape the red blood cells are in the shape of a sickle or half-moon.

This abnormal cell shape impairs the blood cells’ ability to carry oxygen throughout the body. The abnormally shaped cells can get stuck inside the blood vessels and cause intense pain throughout the body. When our organs such heart, liver, kidneys and our tissue in general does not get adequate oxygen it leads to very intense pain.

Sadly, there is no cure for Sickle-cell disease.

Some of the ways of managing sickle-cell disease:

  • high fluid intake
  • heathly diet
  • folic acid supplements
  • pain medication
  • vaccination and antibiotics for the prevention and treatment of infections
  • Blood transfusions when anemia is severe and life threatening

via WHO | Sickle-cell disease and other haemoglobin disorders.

Here are some things that you also might want to know about Sickle-cell disease:

1. Sickle cell disease is the most common genetic disorder in the United States.  World wide it affects  about 500,00 babies a year, about 100,0oo Americans have sickle cell disease. In the US as many as 2 million people carry the sickle cell gene.

2. Sickle cell disease is chronic but treatable and is not a death sentence. Sickle cell disease is a chronic illness and can be debilitating but with treatment people are living longer into their 40’s and 50’s. Twenty years ago, in many cases children did not live to be adults.

3. Sickle cell disease affects people of many different races.  This is not an African-American disease…it affects other races as well, including Mediterranean, Indian, and Middle Eastern heritage.

4. Patients with sickle cell disease require comprehensive care.   “A lot of day-to-day care can be done by a generalist,” says Dr. George Buchanan, professor of pediatrics at UT Southwestern Medical Center at Dallas. “But it is important to have a team of experts who work together and are in ongoing consultation with a large institution or center that specializes in sickle cell disease.”

via Sickle Cell Disease – 5 Things to Know – NYTimes.com.

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As a social worker and maternal child nurse my work efforts have always advocated for the well-being of mother and child.

I am frequently drawn to humanitarian causes that focus on the mother child dyad. I read so much on social media sites and in newspapers that sometimes the “bad” news often becomes overwhelming and triggers an episode of compassion fatigue.

Personally, I have to pick my causes carefully. I rely on journalistic sources to fill in some of the gaps in my knowledge of what is going on world-wide in the lives of women/mothers and children.

The recent controversial Kony 2012 video overlaps social media and journalism in the reporting of the horrific conditions that are inflicted on young children and their parents. I found myself confused with all the comments on social media sites…but Jessica Gottlieb‘s post has helped shed light on why I am feeling this way.

My critical thinking was being overwhelmed by my compassionate, empathic spirit…this was not a good thing for someone like myself who works in the service of others. I found some balance after reading Jessica’s post which is linked below.

If you are not familiar with Invisible Children and the Kony 2012, viral video you should read Jessica Gottlieb‘s post on this type of journalism and draw your own conclusions about the intersection of credible journalism and social media.

In this era of intense social media exposure the need to be critical readers/listeners/viewers is mandatory lest we believe everything we read, view or listen to or lest we throw away a good message because of the messenger.

There are many good journalists in America. There are talented documentarians too. Great journalists and biographers aren’t typically found in social media. Sure there are some, but not the majority.

http://jessicagottlieb.com/2012/03/this-american-lie-kony2012-and-the-problem-with-messengers/

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Highlights of the week…sharing some of the videos and reads of the last few days.

Please enjoy this beautiful time-lapse video!

Exclusive breast-feeding may just be too hard, study says:

Progesterone…questionsl and answers.

It was a great week here in Chicago with weather that was over the top….I hope you have a wonderful weekend.

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NOTEWORTHY WEDNESDAY!

 Children, Obesity, Epidemic

Sadly, these words can all be used together to describe the plight of many youngsters today. Nearly every week there is something significant written about the obesity epidemic. It has even been related to child neglect and abuse with some states wondering if morbidly obese children should be put into foster care.

The goal is primary prevention ….prevention that starts with education of parents and preventing children from becoming overweight as infants and continuing to be overweight in childhood on into adulthood.

It has been found in some studies that a high percentage of parents do not realize that overweight children face the same health risks as overweight adults…high cholesterol, high blood pressure, heart disease and diabetes. All of these medical problems have the potential of shortening a person’s life. For some reason the message and myth that a fat baby is a healthy one is still prominent in the minds of many parents and grandparents. Back in the day this was thought to be a truth that was widely accepted. For many years, it has been scientifically known that this is a false belief.

“Obesity is likely going to limit a person’s life expectancy and increase their future health care costs,” she said. “So for us, it was a realization that we need to help parents better understand that childhood obesity does track into adulthood.”

Both parents and nonparents cited parents as the group with the greatest role in preventing childhood obesity. But parents were more likely than nonparents to endorse an “it takes a village” approach to limiting childhood weight gain. About 81 percent of parents supported requiring healthy food choices in areas with vending machines, compared with 77 percent of nonparents. Likewise, 77 percent of parents supported insurance coverage of obesity treatment, compared with 69 percent of non parents. http://www.livescience.com/15847-parents-childhood-obesity.html

It is my belief that education beginning in the pre-natal period is where prevention has to begin. A healthy pregnancy and a healthy baby is first…then ongoing education and well baby care is the next step.

 http://www.chicagotribune.com/health/la-heb-childhood-obesity-ads-20120103,0,4311598.story

Here’s what the experts found, with recommendations about exercise for children under the age of five:

— Babies and toddlers spend too much time strapped in car seats and buggies. That should be reduced. Get them out more, and make them walk if they are able and move actively.

— Toddlers should be physically active and allowed to move around freely for at least three hours per day.

— Babies should be active from birth, using activity mats, swimming or through active engagement with another personhttp://www.ibtimes.com/articles/178830/20110712/childhood-obesity-tips-exercise-activity-children-under-five-5.html

 We are currently seeing some efforts to educate parents…there is a current controversial Strong4Life campaign in Georgia to combat childhood obesity. Parent advocates are critical of the billboard and statements of obese children saying that this is a campaign based on shaming overweight children and adolescents. It is also blaming parents for not monitoring what their children eat.

Public Service Announcement on Obesity in Kids

The Strong4Life site offers “Learn,” “Ask” and “Get Started” pages for families, featuring information, resources and tips on exercise, nutrition and losing weight.

My feeling is DO “whatever it takes” to prevent the children of today from having a shorter life expectancy than their  parents.

Bring on the billboards…bring on the controversy…and the arguments…tax sugar loaded products…hold fast food companies accountable for providing healthy choices… go ahead and criticize parents for their own eating habits and the way they feed their kids…if  that’s what it will take to prevent this epidemic from spreading to the next generation…just do it.

Concurrently…develop programs to educate parents and kids to make better food choices from the get go …and if a child is in danger of death from obesity complications then unfortunately Family Services will have intervene to supervise the child’s health care. I am not in favor of taking a child from a family unless it is truly a case of child abuse and neglect with determining factors. But uncontrolled obesity in a child may soon be considered abusive and neglectful.

Nelson TF, Stovitz SD, Thomas M, LaVoi NM, Bauer KW, & Neumark-Sztainer D 2011. Do youth sports prevent pediatric obesity? A systematic review and commentary. Current sports medicine reports, 10 6, 360-70 PMID: 2207139710Share2inShare

via Weighty Matters: After School Sports Increase Junk Food and Total Calorie Consumption.

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l'enfant

NOTEWORTHY WEDNESDAY!

Raising our Children Properly…pour élever ses propres enfants

This week I have been fascinated by the reviews of a new book on parenting…it is reminiscent of how I felt when I read Amy Chua’s “Battle Hymn of the Tiger Mom” last year.

Quite a few articles have been stimulated by this new book…”Bringing Up Bebe

Parenting styles differ so much in various cultures. I imagine it to be a fascinating experience being an American mom trying to raise a family overseas particularly in Paris.

The French do not agree with our American obsession with parenting. Unlike their American counterparts, they seem to manage to get their children to sit still through a meal which is hard to come by here in the United States. We seem to be raising a generation of wanderers who graze on their meals. Generally, we do not expose our children to multi-course meals that are paced for enjoyment and conversation as is typical in France. We seem to be a generation of eating on the run…running to activities from the beginning of the week sometimes through the weekends.

French parents have also learned the art of saying the word “NO”. We seem to spend an inordinate amount of time talking to our children explaining why we are saying no and discussing why a child should not be doing something that is clearly bad behavior….oh and we never say the word “bad”…we describe the behavior as not being nice or acceptable and something that we should not be doing. “French experts and parents believe that hearing ‘no’ rescues children from the tyranny of their own desires”. via New York Magazine

Another interesting comparison is how French babies learn to sleep throughout  the night at about 6 weeks of age. They practice “La Pause”.  ‘La Pause‘ is a period of about 5 minutes that a parent waits to attend to a crying infant. It is somewhat reminiscent of the “crying it out” method of sleep training which teaches a baby to self soothe and not  to expect instant gratification when he/she cries. I am totally not in favor of crying it out…a short cry perhaps…I also do not expect an infant to sleep through the night until at least 8 weeks of age for many good reasons. Co-sleeping is not something that is practiced with any regularity in France. For many families in the United States it is very typical for parents and kids to sleep in the same room, sometimes mom sleeps with one child and dad sleeps with another. Babies may sleep next to the parents or at least in the same room for an extended period of time.

French children are typically not the center of the universe, their parents are good parents but they do not hover over their children. They also do not feel guilty about their parenting practices. Weekends are not spent wrapped up in children’s activities…like the overwhelming, over done birthday parties, sports practices and games.

According to Pamela Druckerman, French parents are not as anxious as their American counterparts…they tend to be a little more relaxed and realize that learning to be parents is a process.

“The French are absolutely not draconian about their own rules,” Druckerman added. “They actually believe that children are more capable, in some ways, and believe in their autonomy. They just give a clear framework in which they can learn and see its a process — you dont suddenly arrive at being a brilliant parent.”

In doing some reading before writing this post I came across the following statement which adds a touch of humor to all parenting styles…I hope you have a laugh…

I think what the French do well is rely on common sense when bringing up their kids, and perhaps the support of mothers, sisters, aunts, and grandmothers, rather than gimmicky books by childless gurus. Why British women are so attracted to bizarre methods of childrearing rather than relying on common sense and a sensible book of essential information is a mystery. But whatever the method chosen rest assured that a mothers place is in the wrong, and our parents fuck us up whatever their nationality.

PHILIP LARKIN – THIS BE THE VERSE

They fuck you up, your mum and dad. They may not mean to, but they do.They fill you with the faults they had And add some extra, just for you.

via St Bloggie de Riviere: French Parenting

related posts:

https://parentingintheloop.wordpress.com/2011/01/15/a-controversial-essay-and-a-variety-of-responses/

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Veteran’s Day 2011

Here is where I was on 11/11/11.

I was picking up food for dinner…

My family was a very military one so I try to carry on the tradition by keeping that spirit alive and well whenever I can.

Today, I made a trip to the local AMVETS center and made a donation…

May all our troops remain safe and may they return home soon!

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NOTEWORTHY WEDNESDAY!

Although only a small percentage of children in the U.S. have reported food allergies it can be deadly for that small number.

It is important for those of us who are not affected by this problem to remain empathic for those that do ….

…..it can mean life or death within minutes of exposure.

With that being said, if your child has friends with allergies or your child, herself, has allergies it means that childhood parties and holiday celebrations at school can be problematic.

There are many ways to host an allergy free event…it may not be all that easy but well worth the effort.

I would urge any parent or grandparent to become familiar with common food allergies and the signs of an allergic reaction so that they can respond appropriately if necessary.

When in doubt if it is an allergic reaction….call 911…better to be safe than sorry!

So…I came across this information in the LA Times which might be helpful.

The latest research shows that 8 percent of children in the United States have food allergies, which means that even if your kid can eat her weight in PB&J or egg salad, she’ll probably have a friend who can’t.

Here are some tips from Beasley on how to host an allergy-friendly kids party:

1. On party invitations, mention upfront if there will be a food-centric theme, such as decorating your own pizza or assembling gingerbread houses.

2. If the parent of a food-allergic child contacts you before the party, offer to put out a “safe” dish (prepared by the parent and dropped off with the child) amid buffet items.

3. Choose dishware that comes in a variety of colors instead of a uniform print. This will help an allergic child avoid accidentally using someone else’s tainted cup or fork.

4. If traditional cake is being served, don’t make a big production out of cutting and handing a slice to each guest. If ice cream is being served, have a nondairy fruit sorbet on hand that can be substituted without drawing attention to the milk-allergic child.

5. If crafts will be a focal point, beware of common allergens that might be ingredients in art supplies, such as glue (milk), modeling clay (wheat) and tempera paints (egg).

6. Giving out goody bags? Be sure any food you include is thoroughly wrapped. Crumbs from a cookie or chocolate’s oils can contaminate the toys bundled beside it. Or leave out food altogether.

Andrea Pyros writes for the coupon site RetailMeNot.com.

Distributed by MCT Information Services

via Allergy friendly party: How to host a kids party – latimes.com.

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