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  • Vital Role of School Nurses
    injuries and might have questions should be included Schafer says Schafer also suggests inviting the HTC s nurse and social worker to attend the meeting Talking things through may help ease the nerves of the school administration and staff she says A lot of times I make visits out to the school especially for the younger kids just starting in the school system to get everything established Schafer says Also encourage your child to participate in the meeting This helps the school staff recognize who he is and remember what his needs are says Schafer And it s wise to start educating a child early to report bleeds to the teacher or other school staff right away Parents can play a huge role in teaching their children to communicate when they are hurting says Schafer It s vital that the child either self infuses or has an adult do it as soon as possible she says Jeanette Cesta mother of three school age children who have moderate to severe von Willebrand disease often includes them in meetings with the school nurse Have your kids come and explain as much as they can she advises When the kids are in school you re not going to be there Cesta suggests scheduling a time to meet before the school year starts I always try to go in at the end of the previous school year and find out if they re going to be available over the summer to talk to she says Sometimes though even the best laid plans can fall apart Cesta recalls one time when her daughter then 10 got hit with a basketball in gym class and the substitute teacher refused to let her go to the nurse s office Afraid to push further her daughter waited a

    Original URL path: http://www.hemaware.org/print/865 (2016-02-18)
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  • Be Prepared: Boy Scouting and Hemophilia
    the HTC Before turning your boy loose in the Boy Scout troop stop by your hemophilia treatment center HTC to talk to your child s team Everyone bleeds differently Jane says You really need to work with your treatment team to figure out what will be safe for your child Educate Troop Leaders When Michelle and Sean Thompson of Tempe Arizona decided to enroll their son Max in Boy Scouts at age 11 they created a PowerPoint presentation on what hemophilia is and how to treat their son s mild to moderate hemophilia B Then they showed it to local troop leaders When the family moved recently Max 13 gave the presentation himself Because the troop leaders were accepting from the beginning the presentation was mostly about letting them know what to do if he got a bleed during a trip Consider the Badges To become an Eagle Scout a boy must earn 21 of 126 merit badges Eleven of those are mandatory including some physical fitness and first aid badges The rest are optional ranging from aviation and geocaching to reptile study and robotics Before you decide which badges to let your child pursue refer to the National Hemophilia Foundation s Play It Safe booklet which has guidelines for safe exercise suggests Nicole Hroma senior physical therapist at Children s Memorial Hospital s HTC in Chicago There are no badges a scout can t do he just has to find a way to adapt them for his condition says Hroma referring to boys with hemophilia The scouts are really willing to modify badges to make them accessible to everyone It s more the effort and the meaning behind the badge that matter For example rock climbing can be safe for a child with hemophilia as long as he takes appropriate precautions Those include wearing a helmet tethering himself to another person so he s not bearing all his weight on his joints and climbing on an indoor climbing wall Alternately a boy who s climbing outdoors might opt for a hill climb instead one that s less steep and dangerous However don t forget to look at each badge s activities realistically says Hroma If your son gets bleeds in his shoulder regularly he might avoid badges that stress that joint Your son s hemophilia also can earn him a badge To earn the disabilities awareness badge your scout could educate his troop about his bleeding disorder and help members understand other scouts chronic health conditions Be Involved Scouting is a youth run organization with the boys meeting monthly to decide what expedition they will do next But parents meet monthly also providing them with the opportunity to ensure that every outing is safe for their child says Jane s husband Michael I used to say By the way our kids have hemophilia and shouldn t be climbing rocks over there Michael recalls Then he started offering suggestions While the other scouts climbed rocks for instance his sons would

    Original URL path: http://www.hemaware.org/print/837 (2016-02-18)
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  • Send page by email | HemAware
    Health Wellness Fitness Nutrition Taking Charge Pain Management Parenting Family Parenting Family Hemaware Jr Women Women s Bleeding Disorders Carriers Watchdog Insurance Blood Safety Advocacy Community HemAware Blogs HemAware Videos HemAware Photos Chapters in Action Global Spotlight Community Voices En Español Need info Ask NHF Contact HANDI NHF s resource center for additional information on bleeding disorders Home Glossary Site Map Donate Advertise Privacy Policy Subscribe Contact Us Life Stages

    Original URL path: http://www.hemaware.org/printmail/835 (2016-02-18)
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  • Ear Tubes for Children With Bleeding Disorders
    to rule out any other preventable causes of ear infections says Elmaraghy Chronic fluid in the ear can cause conductive hearing loss preventing the transmission of sound waves to the middle ear Signs of this type of hearing loss include speaking loudly misunderstanding speech or not hearing certain words Further testing can pinpoint problems or diagnose developmental delays I assess speech and language skills during the exam to evaluate if the child is age appropriate Elmaraghy says Treatment Plan for Bleeding Disorders Once it has been determined that your child needs ear tube surgery there should be a meeting of the medical minds My role as a hematologist is to communicate with the ENT the treatment plan for the child says Amy Dunn MD pediatric hematologist oncologist Aflac Cancer Center and Blood Disorders Service Children s Healthcare of Atlanta For a patient with VWD there are fluid guidelines that should be followed when taking DDAVP DDAVP is the synthetic hormone desmopressin acetate which can cause hyponatremia a low concentration of sodium in the blood Because the surgery is minimal and the ear does not contain a lot of blood vessels the bleeding risk is low Factor coverage for patients with hemophilia is less important than in tonsil and adenoid surgery Dunn says For ear tube surgery lower doses are needed with less frequency See Tonsil and Adenoid Surgery in Children hemaware org Jan 11 2012 Tube Types There are a variety of tube types shapes and sizes but most are flexible plastic cylinders about 3 mm in diameter Some have an antimicrobial coating to decrease infection risk Others have flanges or hooks that anchor them in the eardrum for longer periods For a child with very small ear canals I use tubes that are smaller Elmaraghy says If I want a tube to last longer I use a T tube which is a more permanent ear tube that I can leave in there for years Most tubes fall out on their own after six to 18 months but an estimated 5 to 10 have to be surgically removed he says Ear tubes break the vacuum effect With an ear tube or pressure equalization tube you re equalizing the pressure from the middle ear space to the environment says Elmaraghy You don t have that negative suction effect pulling things from the throat into the ear The new ear tube keeps the eustachian tube open allowing air and sound waves to reach the middle ear Fluid can then drain more easily into the ear canal instead of stagnating and causing infection Ear Tube Surgery To insert the ear tube the surgeon creates a small hole in the eardrum about 1 5 to 2 mm in diameter Fluid and debris can be suctioned out before the tube is placed The surgery is typically outpatient even for children with bleeding disorders The procedure requires general anesthesia but it s fairly short Elmaraghy says It usually takes five to 15 minutes There can be

    Original URL path: http://www.hemaware.org/print/835 (2016-02-18)
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  • The First Years After Your Child’s Diagnosis | HemAware
    the ER and they d look at us like Oh my God you ve got a kid with severe hemophilia They didn t know what to do with him Now we have an HTC in L A and our pediatric hematologist in Santa Barbara I feel like I have a strong medical team The only joint bleed Charlie has had was in his ankle when he was first diagnosed Melissa says he is an active two year old he has hit his head many times and is constantly covered with bruises but now he is talking and can let her know where it hurts Melissa manages his infusion s by herself at home and Charlie who understands that he hurts less after he is infused picks out his own Band Aids afterward When people ask him about his medical ID bracelet he says I have hemophilia In our family hemophilia is normal and it s fine and we re not scared of it Melissa says I wouldn t have said that a year ago Cindy Michael MSW LISW at Northwest Ohio Hemophilia Treatment Center at Toledo Children s Hospital says her center s philosophy is that hemophilia is manageable She tries to help parents land somewhere in the middle of the spectrum between denying the disorder completely and overprotecting their children to the point of paranoia We ve had families that have just about padded their family room until the child is five or six years old so they can t bump into anything and that s pretty extreme she says Michael also attempts to involve fathers in networking with other couples since much of the focus is often on the mother as the primary caretaker One of the concerns of fathers in particular is that they won t be able to connect with their sons over sports since contact sports are typically off limits But social workers stress that there are lots of safe sports and plenty of other activities that encourage father son bonding Michael says no question from parents is silly or stupid and encourages them to call at any hour We don t want people languishing at home for months panicking about bleeds they are missing she says We re used to people calling us a lot It s an educational process Finally Michael says it is critical that the child s parents talk about the stress that hemophilia brings to the marriage Having a child with a chronic illness is very stressful on a couple I talk about that a lot at the beginning she says It s really important to support each other and to be involved and patient with one another Vanessa who sought guidance from a social worker with her husband immediately after the diagnosis says part of transitioning into the next phase of hemophilia was learning how to explain the disorder to friends and family who often would show their concern by asking questions At first I just told them I

    Original URL path: http://www.hemaware.org/story/first-years-after-your-child%E2%80%99s-diagnosis (2016-02-18)
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  • Infants & Children | HemAware
    Savary RN 12 14 2009 When Sherry Johnsson s son Mark was three years old he had a joint bleed and was brought to his local hemophilia treatment center HTC for a peripheral infusion read more Bruising Happens By Kristina R Anderson 12 14 2009 She and her toddler were out for a stroll when she had an unsettling experience Her son has a rare thrombocytopenia type platelet disorder and had a black eye and bruises read more Bruise Protection By Kristina R Anderson 12 11 2009 Avoiding trips to the ER with your toddler is an unspoken goal for every parent but especially for parents of children with hemophilia and bleeding dis orders read more Use Your Head Wear a Helmet By Elizabeth Thompson Beckley 12 09 2009 Sports injuries don t often result in death but when they do the leading cause is traumatic brain injury which disrupts the normal functions of the brain read more 3 of 3 Life Stages Infants Children Teens Young Adults Adults Aging Research Treatment Hemophilia A B von Willebrand Disease Rare Bleeding Disorders HIV Hepatitis C Surgery Transplants Researcher Profiles Health Wellness Fitness Nutrition Taking Charge Pain Management Parenting Family Parenting Family

    Original URL path: http://www.hemaware.org/topics/infants-children?page=2 (2016-02-18)
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  • Career Choices
    do go to a school that has a solid liberal arts program Then you ll have options says Lisa Orbé Austin PhD a psychologist executive coach and partner at Dynamic Transitions Psychological Consulting LLP in New York City In demand careers include those in healthcare and technology she adds Studying liberal arts introduces you to a variety of subjects And you ll be able to transfer these skills into various fields Attend an accredited college whose credits will transfer if needed says Don Molter MSEd a veteran career counselor at the Indiana Hemophilia Thrombosis Center in Indianapolis Beware of for profit schools that may not be accredited And be open to a junior college at first he adds A junior college or community college will help you save money which is important because you have medical expenses to consider too he says It will also let you explore different subjects without a huge financial fallout Be careful and do your research says Molter Schools that exist only for profit typically don t accept federal grants and prefer private loans which usually have higher interest rates Take action and network You ll need to do more than dream about what you ll be doing five years from now You want to volunteer seek out information and have mentors Orbé Austin explains Volunteering and job shadowing can help shape your future career path Job shadowing can be done in half a day or a couple of hours Molter says If you want to work in a hospital follow a doctor or a nurse These visits will help you be realistic about the requirements and activities of a particular job You ll see firsthand which aspects of the job you like or dislike Consider your health Health insurance and sick leave are important

    Original URL path: http://www.hemaware.org/print/1345 (2016-02-18)
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  • Runner’s World
    run with other people Being stuck with someone on a long run gives you little choice but to get to know each other How do you manage your bleeding disorder while engaging in athletic activity I need to make sure that I am doing my prophylactic treatments on schedule and paying attention to what my body is telling me If I feel like I might be developing or am about to develop a bleed I treat right away and then I take a little time to rest It s also important to plan your schedule carefully so that you can maximize the effectiveness of treatments If I know that I have a big event coming up a longer or more difficult race for instance I will adjust my schedule so that I infuse right before the event You re currently studying abroad at the University of St Andrews in Scotland How did you prepare for that with a bleeding disorder Traveling with hemophilia requires careful consideration Access to care in the UK is relatively easy because as a student I qualify for the National Health Service NHS which is able to provide me with clotting factor Before coming over I did some research to find out if I would be covered by the NHS while studying and located the nearest hemophilia treatment center HTC Locating HTCs is important no matter where you are traveling Whenever I go to a new place I always find out where the closest HTC is in case of emergency I also always bring an ample supply of clotting factor as this can often be difficult to obtain in a foreign country Are there any differences between care and treatment in the US and Scotland The only major difference is that because the UK uses the

    Original URL path: http://www.hemaware.org/print/1305 (2016-02-18)
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