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  • Eating Healthy | HemAware
    in your diet calcium protein and iron Steps for Living Healthy Eating Calcium helps your bones stay strong protein builds muscles and iron builds up your blood cells which can be especially helpful after a bleed or injury explains Diane Delorm a dietitian at the Mary M Gooley Hemophilia Center in Rochester New York Eating balanced portions of your food can also help you stay healthy Try using the portion plate Here s how it works Divide your plate into four parts like fractions in school Meat or other protein rich food should take up one part of the plate and potatoes pasta or rice should also use only one part of your plate Then add vegetables to the other two parts of the plate That way you eat the right amount of every healthy food at every meal Need more help choosing the right food Ask your parents or hemophilia treatment center for help Here are a few easy and healthy recipes to try at home Take Along Trail Mix Makes 2 cups of trail mix 1 2 cup small pretzel sticks or twists 1 2 cup raisins 1 2 cup peanuts 1 4 cup sunflower seeds 1 4 cup chocolate chips In a large bowl combine all ingredients together If you want to serve trail mix at a party or keep a supply for packing a snack try doubling the recipe Use twice the amount of ingredients Store the supply in an airtight container or resealable bag Mexican Quesadillas Makes 2 servings 2 flour tortillas 2 Tbsp shredded cheese any type Sour cream or salsa optional Place one tortilla on a large plate and sprinkle with cheese Top with the second tortilla Cook in the microwave for about 20 30 seconds until the cheese is melted Cool slightly Use a knife or pizza cutter to cut the tortilla into 6 wedges Dip in sour cream or salsa as desired Chili in No Time Makes 6 servings 8 ounces macaroni noodles 1 pound lean ground beef 1 15 ounce can kidney beans drained and rinsed 1 15 ounce can beef broth 1 14 1 2 ounce can chopped tomatoes do not drain 1 6 ounce can tomato paste 1 Tbsp chili powder 1 2 tsp pepper Prepare macaroni noodles according to package directions Drain In a large skillet or saucepan brown the ground beef and drain the excess fat Add the remaining ingredients and bring the ground beef mixture to a boil Reduce the heat to a simmer or low heat and continue to cook for another 10 15 minutes until the chili thickens You can serve the chili over macaroni noodles and garnish with chopped onions or shredded cheese if you wish Add some crackers or tortilla chips and you have a meal in itself This chili can also be made without the macaroni noodles if you prefer Source The Everything Kids Cookbook by Sandra K Nissenberg MS RD 2002 Who Knew Nuts are actually a dry type

    Original URL path: http://www.hemaware.org/story/eating-healthy (2016-02-18)
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  • Going for the Gold | HemAware
    of the Olympic Games It also can be a good sport for kids with bleeding disorders That s because it can build up your bones and strengthen your muscles without hurting your body Your body floats in water which takes pressure off your joints Also water pressure from being underwater can help manage swelling Swimming has four main strokes freestyle backstroke breaststroke and butterfly Freestyle and backstroke are good places to start Then once your muscles are stronger you can move onto the tougher breaststroke If you want to start swimming be sure to sign up for lessons with a certified teacher such as at the American Red Cross or YMCA Also be sure to tell your swim coach about your bleeding disorder and what joints might need extra care Rowing Rowing is an Olympic sport Up to eight rowers in one boat sprint down rivers and lakes at about 40 strokes a minute That s fast Rowing is a great workout and helps tone your upper body But you don t need to go as fast as the Olympic athletes to have fun and be healthy Instead you can use a rowing machine to strengthen your arms back shoulder and stomach muscles Just be sure to ask a physical therapist or someone older to show you the proper body position to avoid injury Cycling When bicycles were invented they had a big wheel in the front and a small wheel in the back This made them very dangerous to ride Today bikes are sleek and fast and cycling is a popular Olympic sport Olympic cycling has four types road around a track on a mountain path or BMX which is not recommended for people with bleeding disorders Riding a bike is fun and can be a great sport for kids with bleeding disorders Just remember to wear a helmet ride on the sidewalk or paved path and stay away from any cars Table Tennis Have you ever seen a game of tennis This sport is a lot like tennis except you play it on a hard table divided by a net not on a court Some people call it ping pong Two or four players hit a lightweight ball back and forth to each other using paddles In an Olympic ping pong match play is very fast Sometimes the ball can go as fast as 70 miles per hour Playing at home with friends can be a lot of fun too If you have paddles and a ball any table can be turned into a perfect spot for a ping pong match As with all sports don t forget to stretch your muscles and warm up And if you have questions ask your parents doctor or hemophilia treatment center about the best way to play these sports and stay healthy To learn more about sports that are right for you read the NHF booklet Playing It Safe Bleeding Disorders Sports Exercise Who Knew Tug of war used to be

    Original URL path: http://www.hemaware.org/story/going-gold (2016-02-18)
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  • Oh, Baby!
    you do Talk to your parents about any questions you have Will the baby have bleeds too If your new brother or sister has a bleeding disorder you may worry that the baby will have bleeds or have to go to the hospital if he or she gets hurt It s normal to feel this way but just remember When you had bleeds or had to go the hospital you got better Your doctors and your parents helped you and they will help the baby too The bleeding disorder that your new brother or sister has may not act like yours You may not get bleeds in the same places and you may use different factor products One of you may even need to take factor more often than the other does This is just like what happens with your friends who have bleeding disorders they have different experiences than you do Playing with your new sibling If your new brother or sister doesn t have a bleeding disorder you may feel different or even jealous because the baby won t have bleeds or have to take factor But all brothers and sisters are different in some way It s OK to be different Your parents will love and take care of both of you Being a big sister or a big brother is an important and fun job You can help your parents by getting a bottle or diaper when they ask or picking up the baby s toys off the floor And babies can be a lot of fun too You can sing songs and talk to your new brother or sister make up adventure stories or read your books to the baby You can make silly faces and play peek a boo Having a new baby in

    Original URL path: http://www.hemaware.org/print/431 (2016-02-18)
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  • Oh, Baby! | HemAware
    bleeds in the same places and you may use different factor products One of you may even need to take factor more often than the other does This is just like what happens with your friends who have bleeding disorders they have different experiences than you do Playing with your new sibling If your new brother or sister doesn t have a bleeding disorder you may feel different or even jealous because the baby won t have bleeds or have to take factor But all brothers and sisters are different in some way It s OK to be different Your parents will love and take care of both of you Being a big sister or a big brother is an important and fun job You can help your parents by getting a bottle or diaper when they ask or picking up the baby s toys off the floor And babies can be a lot of fun too You can sing songs and talk to your new brother or sister make up adventure stories or read your books to the baby You can make silly faces and play peek a boo Having a new baby in your family can be exciting and no matter how old the baby gets you will always be the big sister or big brother Who Knew The most popular name for a baby boy born in 2009 was Ethan followed by Noah Jacob Aiden and Logan The most popular name for a baby girl born in 2009 was Isabella then Emma Olivia Ava and Sophia Some Hollywood celebrities have named their babies Apple Moxie CrimeFighter Fifi and Calico The most common last name in the US is Smith Source babycenter com US Census Bureau View the discussion thread Life Stages Infants Children Teens Young Adults Adults

    Original URL path: http://www.hemaware.org/story/oh-baby?quicktabs_story_page_tabs=0 (2016-02-18)
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  • How To Share Your Bleeding Disorder Story
    much you want to talk about Here are some tips on what you can say Just the Facts You know more about your bleeding disorder than your friends ever will Don t feel like you have to tell them everything You don t need to explain how often you infuse or how many trips to the hospital you ve had You and your friends may talk about these things later In the beginning you can keep it simple Ask Others for Advice If you want to tell your friends but are nervous about what to say talk to your parents your teacher or the staff at your hemophilia treatment center Ask your brothers or sisters or your friends and the older kids at your bleeding disorders camp this summer when they told their friends about their bleeding disorder and how they did it Here are some examples of things to say to your friend I have hemophilia which just means my blood doesn t act like your blood When I cut myself or fall down it takes me longer to stop bleeding so I have to take special medicine And sometimes I get nosebleeds too You know when kids have

    Original URL path: http://www.hemaware.org/print/474 (2016-02-18)
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  • Use Your Head: Wear a Helmet
    disrupts the normal functions of the brain Sports and recreational activities account for almost 21 of all traumatic brain injuries among American children and adolescents according to the AANS Bleeding disorders such as hemophilia increase the risk of problems following a head injury Bleeding in or around the brain can be life threatening or result in permanent nerve damage This is why any significant head neck or spine injury requires factor replacement im mediately as well as a CT scan and evaluation by a healthcare professional Signs and symptoms of a head bleed include repeated vomiting irritability drowsiness headache and confusion These symptoms may not appear until several days after the injury Aside from the contact sports that most experts suggest people with bleeding dis orders avoid such as football hockey boxing and wrestling even one of the activities commonly recommended for these individuals e g bicycle riding poses a risk for head injuries In fact cycling was the leading cause of head injuries in 2005 according to the US Consumer Product Safety Commission CPSC which tracks product related injuries through its National Injury Information Clearinghouse CPSC says 64 500 bicycling related head injuries were treated in 2005 in the US Bicycle helmets provide measurable protection in terms of both reducing the deceleration experienced by a person s head and protecting against direct compressive force says Arthur Day MD AANS vice president and director of the Cerebrovascular Center and Neurologic Sports Injury Center at Brigham and Women s Hospital in Boston Yet too many children and adults take unnecessary risks and do not wear helmets According to the AANS up to 85 of head injuries could be prevented through proper use of a helmet that fits properly and won t fall off during a fall Look for a helmet that

    Original URL path: http://www.hemaware.org/print/133 (2016-02-18)
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  • Bruising Happens | HemAware
    She urges her colleagues to always take a good medical history and order lab tests to rule out a bleeding disorder when they see a child with abnormal bruising Most physicians when they see a child with suspected child abuse will do necessary prolonged bleeding time tests These tests can include prothrombin time and partial thromboplastic time testing to measure coagulation or clotting ability screening tools to determine whether the child s clotting cascade is functioning normally Test results can indicate a bleeding disorder but it can still take hours or days for lab results a concern for anxious families who are waiting to find out if their child has a bleeding disorder or other condition A lot of physicians miss the diagnosis of Ehlers Danlos syndrome which is an inherited abnormality of collagen where we see doughy skin and bruising with poor wound healing says Heisel Kurth who spoke about recognizing this uncommon disorder at the National Hemophilia Foundation s 57th Annual Meeting in 2005 Ehlers Danlos syndrome may be first diagnosed in the emergency room It can result in blood vessel fragility that can manifest as easy bruising or bleeding Bleeding tendency is rare although one type is characterized by vascular rupture and bruising I try to educate primary care physicians pediatricians and hematologists because a lot of these kids end up seeing their physician due to parental concerns about the bruising Heisel Kurth says I get many referrals with the question Does this child have an underlying bleeding disorder or medical condition that would explain this bruising other than abuse Heisel Kurth says that many physicians are aware of bleeding disorders in children as a cause of bruising and they are quick to do a work up on a child for a bleeding disorder when bruising is present A problem that remains however is that screening coagulation studies may not pick up some of the milder bleeding disorders such as mild von Willebrand disease rare factor deficiencies and platelet dysfunction disorders This is why hematology is often the final stop for bruised kids before a determination of abuse is made My group sees one or two children a month who have bruising or other bleeding issues with a concern about abuse says Heisel Kurth The majority unfortunately turn out to be abuse rather than bleeding disorders Hannemann says that when she was in nurse s training she was told that being accused of abuse is a very real issue for parents of kids with a bleeding disorder Kids can be very different from one another she says You ll always have active fearless risk taking kids who will bruise a lot while others may be naturally more cautious preferring to read books on a pillow Some kids have siblings who pound on them But Heisel Kurth stresses that just as kids are different so are parents Some bubble wrap the whole world around their child others are more laid back It s all individual With prophylaxis the

    Original URL path: http://www.hemaware.org/story/bruising-happens (2016-02-18)
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  • Bruise Protection
    of the pediatric hemophilia treatment center at the University of California at San Francisco Children s Hospital The head is the part that we re most concerned about says Huang The head is bigger and heavier and that s generally where kids hit when they fall That s not to say that toddlers cannot have joint bleeds as well so we re obviously concerned too about elbows ankles knees and legs in little kids He warns that parents should watch their child s gait for signs of discomfort if they suspect a joint bleed And they should watch for symptoms of a head bleed such as repeated vomiting irritability drowsiness headache and confusion Huang believes that parents cannot protect their child 100 of the time but he points out some common sense methods that can be used to minimize the chance of potentially dangerous accidents and head on collisions He recommends parental vigilance in arranging household furniture and padding sharp table edges getting all floors carpeted or taping down rugs on hardwood or tile floors Helmets are encouraged for toddlers as they venture out into the world on two feet Huang says he recommends them to parents all the time Kids generally like the helmets even if they cannot wear them all of their waking hours Options for Protective Gear Parents of children with hemophilia and other bleeding disorders can be very creative in the face of necessity Leah Brundage the mother of a child with a rare bleeding disorder says she feared her son Mitchell would hurt his head and suffer a brain bleed She was given an institutional helmet around the time he began to crawl but it was so imposing it made her cry It was so big she remembers it was just too huge to put on his head so I made him one out of thick cotton batting Brundage then perfected her creation with high performance medical grade foam and started marketing it Endorsed by the Hemophilia Treatment Center of Western New York the helmets are now sold online The whole purpose of Comfy Caps is to take the stigma out of a helmet says Brundage They sell for about 75 and come in various fabrics Jennifer Mermilliod board member of the Hemophilia Foundation of Southern California says she started childproofing the family s home when her son Nathan who has severe hemophilia B was a newborn The crib was the source of most of Nathan s injuries so she padded it with two inch thick foam her seamstress had sewed together for the inside The Mermilliods lined their hardwood floors with one inch thick blue interlocking foam play mats from Toys R Us that retail for about 20 each They re great shock absorbers and easy to keep clean she says Jennifer then sewed pads to the inside of her son s sleepers attached tripled fabric pads into every pair of pants and added gardening kneepads to the outside of the pants Another parent

    Original URL path: http://www.hemaware.org/print/185 (2016-02-18)
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