Create a Safe Environment for a Child With Hemophilia
Edited by Lor777, Eng, Maureen D., Lynn and 3 others
After learning that your child has hemophilia, you may enter the same old rooms and suddenly see them as dens of danger, something out of a horror movie! You may think that you will have to remodel your house or apartment to protect your child. You may think: "Our street is too busy, the backyard has too much concrete and not enough grass, our stairs are too steep, we need carpet, we should give away the dog..." If you choose to, you will see danger everywhere. Or you can choose to do what so many other parents of children with hemophilia have done--nothing, except take routine baby safety precautions.
- 1 How to Create a Safe Environment
- 2 Protective gear
- 3 Head gears for infants with hemophilia
- 4 Be Alert!
- 5 Modifying the Environment
- 6 How to Make A Room Safe
- 7 Tips Tricks & Warnings
8 Questions and Answers
- 8.1 What is the best brand of hemophiliac helmets?
- 8.2 Protective helmets epilepsy? Are there new designs that look good and are more inconspicuous?
- 8.3 Hi, do you know where I can buy a Danmar's Soft Top Comfy Cap from, thanks?
- 8.4 I am trying to find a place where to buy toddler jeans with knee padding?
- 9 Comments
How to Create a Safe Environment
Personal protective gear these days is "cool" -- and smart. Even adults invest in safety equipment that is sensible to wear and sensational to look at! Our children can easily wear protective safety equipment without standing out. But some parents want their children to fit in completely and not wear anything that would label them "different." What are your options? Consider the historical perspective: Years ago many children with hemophilia had to wear helmets because treatment was not as advanced as it is today. The social risks, of your child looking different and being subjected to stares, were outweighed by the medical risks of too many bleeds damaging the joints or injuring the brain. Treatment today is fast and effective and, with prophylaxis, prevents bleeds. The social risks of wearing some kind of protective gear now usually outweigh medical risks. Although your child should wear protective gear during certain sports and physical activities, during routine activities, it's a matter of choice.
What about helmets? I am not terribly in favor of them, especially if a child is on prophylaxis. At one meeting I attended, a parent of a 3-year-old on prophylaxis mentioned that her child often wore a helmet. The group asked, "Because he's had head bleeds?" No. "Because he hits his head against the wall when he can't have ice cream for breakfast?" No. We were unable to think of any other reasons, except that he didn't have a skull, which didn't seem likely. "Why then?" Because he has hemophilia. We didn't get it--if he's on prophylaxis, that's more like he doesn't have hemophilia. Chances are, when he bumps his head, he's going to be fine. That's why we put kids on prophylaxis!
Knee and elbow pads are pretty harmless and can be slipped under clothing. There are some great pads available now, given today's emphasis on athleticism, that look less "medical" and more "fashionable." But unless you're an avid bicyclist, skydiver, or race car driver--and not many toddlers fit that description--some protective gear is going to attract attention. This doesn't exactly support our normalcy campaign. Some parents refuse to use helmets because their children look different. Other parents think their toddlers should wear helmets all the time. Still others insist on helmets only during playtime and the learning-to-walk stage or on asphalt-coated playgrounds. Many parents like the fact that helmets lessen their worries, letting them treat their children more normally.
The use of protective gear is something you and your doctor should discuss. However, use your common sense: Who is the helmet for--you or your child? Can you alter your feelings about hemophilia so that your child doesn't have to wear one? I know parents who insist that their child, who has never had a head bleed or even taken a bad fall, wear a helmet out to the mall. This attracts a lot of attention. Who benefits from this attention? (Hint: It's not the child.)
Head gears for infants with hemophilia
Protective headgear is often recommended by physicians for infants with hemophilia. A wide range of head gear is available on the market, with many different options, so it is best to consult with your doctor before purchasing one for your infant. Protective head gear protects children and allows them to be active, play and interact with other children, which will help them gain confidence and stay healthy.
Even with the emphasis on normalcy, your child should wear a Medic Alert bracelet. This bracelet will have his medical condition, "hemophilia," inscribed on the back, with a phone number for the Medic Alert Foundation. Your physician or emergency room staff will call this 24-hour number for medical treatment information. If your child is an infant, you can attach the bracelet to his ankle or pin it to his jacket when traveling. Your child may protest at first but will soon forget it is there. You can also mark your stroller and car seats with tags providing information.
In the car, your child should always be strapped safely in a car or booster seat, preferably in the back seat, away from air bags. Invest in a good seat because it could save your child's life. Under no circumstances should any child be allowed to move unrestrained in a moving car. Car accidents are the leading cause of death in all children under 5 years of age, and many states mandate the use of car seats. Sometimes it's hard, especially around age 2, for children to comply, but you can set an example yourself by using seat belts, and you should tell your children that wearing seat belts is the rule. I always told my children, sympathizing with them, that I knew it was hard, but (in an intense whisper) that police officer told me I have to use car seats. Appealing to a higher authority sometimes works!
Modifying the Environment
An alternative to padding your child is to modify his environment to make it safer. Of course, it's impossible to create a completely safe environment; accidents and bleeds will happen. But just as babies need cuddling, they need to explore their environment.
Babies explore their environment to find old Cheerio's under the counter to eat and fireplace soot to smudge--seriously, they need to explore for proper mind and body development. All their learning comes through their senses, so they need to touch, smell, hear, and see everything. The more your child explores, the stronger his curiosity grows, and the more he hears. The worst thing you can do is shut off exploration because you want him to be safe. Encourage exploration by making rooms safer.
How to Make A Room Safe
- 2Carpeting also makes stair climbing less worrisome. Eliminating the possibility of children slipping on bare wood stares.
- 3If you have bare hardwood floors, you may want to make sure your child wears sneakers or sleepers and socks with rubber on the soles for traction.
- 4If you use an area or throw rug, make sure it has rubber padding to prevent it from acting like Aladdin's magic carpet!
- 5When your child is past 18 months, you may want to get rid of your coffee table.
- 6Some parents who keep the coffee table will pad the corners.
- 7You may want to pad the corners of your fireplace (if you have one) or a large TV.
If you take no other special precautions that those mentioned above, remember that many accidents causing bleeds occur when your child is tired or sick. When he is tired, your child's muscle strength and coordination are reduced. Buckling knees and stumbling steps can lead to trips, head bumps, and mouth cuts. Help him out when it's late and he's tired--clear objects out of his path, put pads on him, move the coffee table--put him to bed! You can avoid some bleeds by taking everyday precautions and by changing the environment, but sometimes hemophilia bleeds just happen, despite your bed endeavors.
Tips Tricks & Warnings
- It is imperative that every child, with or without hemophilia, wear a helmet while bicycle riding, rollerblading, downhill skiing, water skiing, or snowboarding.
- Children with hemophilia should always follow recommended sporting safety rules.
- Your emphasis regarding your child with hemophilia should always be on normalcy.
- Educating yourself about hemophilia is one of the best defenses you can have against this bleeding disorder.
Questions and Answers
What is the best brand of hemophiliac helmets?
There isn't any best brand ever. Each manufacturer has their own designs that could cater to their own clients. Some of the reputable brands that you may want to check out are:
- Danmar's Soft Top Comfy Cap
- Hard Shell Norco Protective Helmet
- The Playmaker Protective Helmet
- Thumper Bumpers
- The Toppen 77 Helmet
- Clear Post-Op Helmets
Protective helmets epilepsy? Are there new designs that look good and are more inconspicuous?
Actually, helmets that are designed for this will never be made in a way that it will be inconspicuous. This is because if it is not that obvious, when you happen to have an attack, the people around you won't be able to know what's wrong. This works the same way with artificial legs. It is not designed in a way that it won't be obvious that it's artificial. This is for the benefit of the user in case help will be needed or special treatment is to be given.
Hi, do you know where I can buy a Danmar's Soft Top Comfy Cap from, thanks?
Buying a Danmar's Soft Top Comfy Cap helmet for my son
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I am trying to find a place where to buy toddler jeans with knee padding?
My great grandson is 16 months old and I'd like to find clothes
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