“Your child has hemophilia.”

Those first words can be shocking. You want nothing more than your child to be “healthy." The initial diagnosis can send you into a whirlwind of emotions. You may feel anger, resentment, guilt, depression, and confusion. Even if a bleeding disorder runs in your family, the diagnosis and realization of it actually happening to your child can bring on a tidal-wave of emotions. You cannot buy a book and learn about hemophilia overnight. It takes time. The feelings you are experiencing are legitimate and very real! Hemophilia will become a reality in your life when your child experiences a bleed. You need to know what to do, at that moment, to make the experience less traumatic for your child and your entire family.

“This is the time for the clinicians at OptionCare Hemophilia Services.”

Where do you start? Reassurance from those who have been living with a bleeding disorder is a good start. Understanding what lies ahead for your family and accepting that hemophilia is treatable is a step to acceptance. Emotional overload is one way to describe how many feel when they bring their child home from the hospital.

“All I knew was that this was not the journey I had expected. This wonderful time in my life was tainted with something I could not touch or even begin to grasp when I looked at my son.”

-Anonymous

The most important thing to do upon diagnosis is to empower yourself. Reading about hemophilia, using the internet to find resources, contacting your local hemophilia chapter, or making an appointment with the local Hemophilia Treatment Center, is a good start. Raising a Child with Hemophilia: A Practical Guide For Parents, by Laureen A. Kelley, is a recommended read. You may call ZLB Behring, Customer Support for your free copy at 1-800-683-1288.

OptionCare Hemophilia Services will place you in contact with other parents living with hemophilia. This support service will make an impact on your ability to successfully live with hemophilia.

OptionCare Hemophilia Services has a network of moms and dads, who have "been there and done that," and are available to help. You will not have all of the answers at once! It takes time. Here is where we can help you get in touch with someone if you do not have a resource available to you.

Email Now! We encourage you to submit a question via email to cmacdonald@optioncare.net and one of our parents or clinicians from the OptionCare Hemophilia Services family will respond to you. At your request we will contact you via e-mail or telephone. We will protect your privacy.

What Questions Should You Ask When Selecting A Home Care Provider?
(click here to find out)

Helpful Tips and Hints for Parents

• Don't worry about what "might" happen.
• Popsicles are great for mouth bleeds (even after you have infused).
• Hemophilia should be part of your life, not the main focus!
• Don't forget to take care of yourself! Have some quality time alone, or go on a date with your significant other.
• Have your child wear a Medic Alert® bracelet. There are several new "sporty" type bracelets available. Small children can even wear one around their ankle.
• Become educated! Arm yourself with as much information as possible.
• Always remember, “boys will be boys.” Try not to constantly be "hovering" over your child. Relax and let your child enjoy being a kid. You can always infuse.
• Exercise is a must! Keep joints and muscles in shape. Nothing is worse than being overweight and out of shape. It makes it that much harder to find a good vein to infuse.
• Always have a dose of factor in your refrigerator. Even if you don't even know how to mix your factor, keep it on hand in case you need to infuse. Remember, OptionCare Hemophilia Services nurses are available all day every day. If you have to run to the emergency room bring your factor and you won't be waiting for it from the hospital pharmacy!
• When your child gets those first bruises and you can feel the hematoma (bump), it may be pretty scary.
• Get an ink pen and mark around the edges of the bruise so you can tell if it is getting larger. When you talk to your hematologist, they will ask how big is the bruise, the size of a nickel, quarter, etc. and if it is getting bigger.
• Love your child! Don't let hemophilia scare you away from this precious time of your child's life when they are so small! Enjoy them, love them, you will get it all in time.
• When in doubt, infuse! The short term pain from infusion is minimal. An extra infusion will not only help to avoid a future bleed, but will also give you peace of mind.

What is choice and does it matter?

You will have many questions. There will be new and confusing words. There will be many new things you that you will not understand, such as home care. OptionCare Hemophilia Services will educate you. As a parent of a child with a bleeding disorder, you will come to understand what role home health care will have in your life. You will understand how to order your factor and WHY you always need factor in your home. As a new parent, we have been trained to think, "THE DOCTOR IS ALWAYS RIGHT." You will learn as you become the strongest advocate for your child that this may be true, but you can be empowered with information. So many people tell their doctors at their initial clinic visit to “sign us up with whichever company" and we'll use the nurse the company sends out, or we’ll get our factor "from wherever is easiest," not realizing the choices they are making and how these choices will affect them later. In many cases, people learn the hard way that there were questions they did not know to ask about home care and factor providers and they end up changing companies along the way once they realized their options. What kind of services does the home care company provide? Are the nurses trained to work with children? Does the home care company just send factor, call a nurse when needed, and not communicate again until its time to place another order?

OptionCare Hemophilia Services provides a full service to our patients. We are able to provide factor and supplies, nursing as needed, and you will be assigned a Patient Care Coordinator who will serve as your contact and resource person. Our reimbursement specialists will track your claims, monitor your lifetime cap (if you have one), and will facilitate any insurance changes you have. If you have any questions about the services we provide, or if you simply need to find someone to talk to please call us toll free at 866.436.4376.

Please Note: Medical professionals are contacted to assist in accurately answering questions. However, it is recommended that you confirm any clinical information with your own medical professional.