FAQ's, a work in progress

What is Hemophilia?: Hemophilia is a life long, hereditary bleeding disorder where a person is missing or does not produce enough clotting factors to form a clot.
What are the types of Hemophilia?: The two most common types of Hemophilia are Hemophilia A and Hemophilia B. Hemophilia A is the disorder in which there is deficiency of the production of factor VIII protein. Hemophilia A may also be known as Classical Hemophilia. The second type would be Hemophilia B which is deficiency of the production of factor IX protein. Hemophilia B may also be known as Christmas disease.
What are the different classes of severity of Hemophilia?: (Factor Levels)
The classes of severity are as follows:
● Severe - produce less than 1% of factor
● Moderate - produce 1% to 5% factor
● Mild - produce 6% to 25% factor
Is there a cure for Hemophilia?: There is no cure at this time. Advancement and research is still in progress to hopefully one day develop a cure.
What is a HTC?: HTC stands for Hemophilia Treatment Center. This is a team of specialists that help control and watch over the care of your child’s Hemophilia. The HTC team would consist of your Hematologist, Pediatrician, Nurse, Social Worker, Physical Therapist, Orthopedist, and Dentist. It is important to make yearly appointments with your HTC so they can keep track of your child’s well being and be prepared and ready to treat your child in all cases, large or small. It is also very important for the research and development for our doctors to continually learn and develop a cure.
What is the best type of medication for my child?: Your HTC team and hematologist will be the ones to help decide the best type of factor treatment that would best control your child’s bleeding disorder.
How do I obtain the Factor and other medications for my child?: The Factor and other supplies needed for your child, must be obtained from a health care service provider, such as Paragon. Factor cannot be purchased at a regular pharmacy. Remember you have the choice of which company to purchase your medicine. Make sure the company you work with provides you with great service and resources. Paragon is the company that will do just that!
When will I learn to infuse my child?: This is really up to an individual parent. If you are able to do the process immediately it gives you freedom. However, infusing infants can be very difficult and trips to the ER or to your hematologist will be necessary. Infusing your own child can be a scary and trying process. But never wait to late to learn so you can live your life. Talk to your HTC and hematologists.
Who should learn to infuse my child?: Multiple members of a family should learn to infuse. Not only does this give you peace of mind but it also makes sure that your child will be taken care of at any time he/she has a bleed. (Parents, grandparents, aunts and uncles even older siblings)
How do I child proof my home for a Hemophiliac?: Suggestions for child proofing your home are as follows:
1) Foam rubber on fire place brick.
2) Remove small end tables that are easily knocked over.
3) Do regular child proofing like you would for any child by locking cabinets, covering plug ins, put gates in front of all stairs.
4) Foam rubber on edges of furniture that have sharp edges or corners.
5) Cover or remove items that a child could harm themselves and cause a bleed.
When do I infuse?: You do not want to wait to infuse a child when you know they have a bleed. You will learn through your HTC and hematologist, and own experience on which bleeds are more serious then others. You may not always have to treat superficial bleeds. However, never hesitate to go to the ER or call your hematologist for uncertainties. It is more important to infuse than not!
What do I do to help stop bleeds, that don’t need factor?: Superficial bleeds and bruises can be treated with ice packs and pressure. Ice packets are a necessity to have in your home. The superficial bleeds from bumps can be helped with placing an ice pack around the area with an ace bandage. Good items to use as ice packs are bags of peas, and you can even make small packs using surgical gloves and filling them with half water and half alcohol. Other small scratches could use a bit of pressure and a band aid. Just be sure to watch all bumps and bruises to make sure the bleeds stop.
What are some easy treatments for a small mouth bleed?: This is easy you get to use a child’s favorite Popsicle. You will want to keep these on stock at all times. The Popsicle can help shrink the vessels and help with swelling in the mouth. The kids like them too. If you have serious bleeds you will need medications which you will get from your HTC or hematologist. Always contact your doctor if bleeding persists.
Will my child bleed from their vaccinations?: This will depend on each child. Some children bleed from vaccinations and some do not. A good proactive measure is to make sure your physician attaches ice packs and pressure to the vaccination site immediately. This will help with the pain, swelling and bleeding if it is to occur.
What is RICE?: Rest an injury. Do not use the body part that is bleeding
Ice the injury for 15-20 minutes every 1 to 2 hours
Compress wrap with an elastic bandage
Elevation, raise the injury to reduce swelling
(Susan C Zappa RN, CPN,CPON)
What would be a good sport for my son/child?: Many people believe that a hemophilia patient should not participate in any physical activities to avoid the possibility of bleeds. The opposite is actually true. A hemophilia patient needs physical activity to keep his muscles strong. Muscles protect joints thus reducing bleeding episodes. The ideal sport would be swimming. It is a low-impact sport with lots of muscle building qualities. If the school where your child attends does not have swimming, golf is another good choice along with archery, bicycling (but always wear a helmet, knee and elbow pads.), fishing, dancing, bowling, gymnastics, horseback riding, ping pong, or badminton. Your HTC and hematologists will be the best to answer this. It may depend on the level of severity your child has. Non contact sports are best, No football, rugby or bull riding.
What leads up to an ankle fusion?: When bleeding occurs over and over in the ankle, synovitis occurs. Synovitis means that the synovial membrane which lines the joint becomes thick and grows more blood vessels. With more vessels, come more and larger bleeding episodes. More and larger bleeding leads to arthritis. Sadly the cells which digest blood in the ankle (during a bleeding episode) also destroy the cartilage. When the cartilage is gone, the bones rub together and begin to erode. Many times cysts will form on the end of the leg bone, and the bone will begin to split. The signs and symptoms of arthritis are much the same as a bleed. The ankle will have almost constant pain and an aching feeling. It will feel stiff and loose flexibility almost feeling frozen in place. When the ankle has this much damage, an ankle fusion becomes necessary.
How can I find a good Orthopedic Surgeon?: Sometimes it is very difficult to find an orthopedist that is willing to perform surgery on a hemophilia patient. Hemophilia is such a rare and dangerous disorder, that most orthopedists don’t take the time to learn the do’s and don’ts of hemophilia. You have probably found the same to be true of dentists and oral surgeons. When a major surgery, such as an ankle fusion, becomes necessary most comprehensive treatment centers know of surgeons who will accept hemophilia patients. In some cases, the patient is left to find one on his own. When beginning the search for a surgeon, the internet is a good tool to use for finding one in your area. Also, most hospitals have a directory of doctors. This is another good tool to use. Always call the office of a prospective doctor and ask if the surgeon is willing to operate on a hemophilia patient. Get the answer before making an appointment, and make sure it is a definite YES! Don’t let the office staff talk you into coming in for a evaluation, just to pay a office visit and be told they won’t do the surgery. This will save you time and lots of money. The orthopedist will require a letter from your hematologist with the surgery requirements and factor replacement amounts and times to be given. The surgeon will coordinate your surgery with a hematologist at the hospital to have the factor replacement done.
What do I do before going on vacation?: Before you go on vacation be sure to get with your Hematologist or HTC and ask if they know of a hematologist in the location you are going. Make sure you get the location of the hospital and contact information. Have your hematologist write you a letter of instructions that you will carry with you at all times. Include your doctors emergency contact information and the infusion instructions including the amount of dosage for your child. I recommend caring this letter with you even when you are not on vacation. Be sure you take factor and supplies no matter where you go!
What if a doctor does not know what to do?: Always carry with you the letter your hematologist or HTC gives you with infusion instructions. Keep your hematologist and HTC emergency numbers on hand at all times. They will be able to be reached for doctors to contact. Once you have become accustomed to having a child with Hemophilia you will be able to direct a doctor on what needs to be done. Remember you are the parent and you will know how your child reacts and bleeds. Sometimes it may feel like you won’t since life throws out surprises but it will get easier.
Where are Hemophilia Chapters located?: Hemophilia chapters are located across the U.S. You may find a list of the chapters and their contacts on the National Hemophilia Website at WWW.Hemophilia.org
How do I get involved or become a member of the National Hemophilia Foundation?: You may visit the NHF website for details for becoming a member or even making donations. WWW.Hemophilia.org
Who do I talk to about insurance issues?: Your HTC will assign a social worker to your family to help you out with questions and concerns you may have. Your company that provides your supplies and factor will be able to assist you in matters as well.

Newly Diagnosed Families:

You have just been given news that you didn’t expect to hear about the health of your newborn or young child. You have just been told that he has a bleeding disorder that will affect the rest of his life, as well as yours. You feel like your life is crashing down around you. You are thinking “What do I do”, “Where do I go”, and WHY??

This is a time in your life when you have so many unanswered questions. However, there are answers and help in all the areas you need to successfully take care of your child and yourself. I can say this because I am a mother of a 4 year old boy Ezekiel who has been diagnosed with Severe Hemophilia A. We found out when he was three days old. I felt that life was going to be chaotic and an ongoing challenge to keep my son healthy and alive. I blamed myself for his condition since I was the carrier of the Hemophilia gene. I know now that just because we have been given this challenge it is not the end of the world or our lives.

With the assistance of wonderful physicians and family members our family has become well adjusted. We are happy. Most of all Ezekiel is happy and a strong growing boy. There are choices you can make to help adjust to your needs as a family. You have to choose a doctor that is knowledgeable and is willing to help your child. Find a wonderful Hemophilia Treatment Center that watches over your child’s care and helps give you the knowledge you need to succeed on your own. Furthermore, you must find a caring and loving company such as Paragon, to provide you with the services needed to care for your child. There are a few services that you will need provided. You will need supplies and medicines such as Factor VIII to administer for bleeds. Experienced people to help with questions you may have. People with the compassion needed to comfort and support you through this challenge.

I want to let you know there is help and support out there for those with bleeding disorders. It just takes your strength, determination and love to take over and not let the bleeding disorder rule your life. You must take special care in things that your child does but you do not have to stop living. Please be strong and give your child the normal life he or she deserves and needs.

I would like to use this time to introduce our section for family support. It will be a growing document as we will always add questions or concerns you submit. Just remember this does not take the place of a physician’s care. A physician should always be called if you have any concerns, especially in emergencies. This is a place for those of us who have experience of living with the blood disorder to share questions, concerns and answers. We can help each other to survive the day to day life of a bleeding disorder.

At Paragon Hemophilia Solutions we are focused on expanding excellence in healthcare by providing superior levels of service,
clinical expertise, and patient care. We customize each service we provide to the specific and individual needs of each patient.