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Stages of Life

Stages of life

Stages of life

If you have a bleeding disorder or if you are a parent or caregiver to someone with these conditions, learning about the condition can help you understand what to expect with the disorder and its treatment. While living with a lifelong condition presents many challenges, knowing what to expect through each stage of life can help you take action to avoid some types of problems and can help you be prepared to address challenges that might occur.


Newly diagnosed - What to expect at the start of care

With an order from your hematologist, Accredo offers in-home nursing evaluations at the start of care to help patients and their caregivers fully understand the treatment plan provided by their physician.

Why is a start of care visit important

  • Ensures the care plan instructions are understood and followed.
  • Provides a health and safety assessment for the patient and the home.
  • Identifies potential barriers in your care.
  • Offers personal, face-to-face time with a bleeding disorder-trained nurse to address any questions or concerns you may have.
  • Provides an introduction of a key member of your Accredo care team.

Your Accredo care team focuses on bleeding disorders only – all day, every day.

Newborn >
 

Newborn (Ages 0 to 12 months)1

As the parent of a newborn with hemophilia, you may be experiencing a mix of emotions. It may have been a shock to hear this diagnosis. Here you will find suggestions for ways to safely manage your child’s bleeding disorder and precautions you should take during his or her first year of life. It is important to build a relationship with your child’s pediatrician, hematologist and specialty pharmacy in order to develop a care plan that is best for your child.


How will I know if my child has a bleed

In young children who cannot yet talk, it’s important to be aware of any signs of bleeding. For infants, you might notice your child:

  • shows signs of a headache through prolonged fussiness that cannot be lessened by a diaper change or by feeding/burping
  • seems more sleepy than usual
  • shows signs of a neck ache
  • has nausea and/or vomits
  • seems sensitive to light
  • is very fussy and hard to console
  • loses consciousness

Teething can cause some discomfort and gums may appear swollen or discolored. Do not apply over-the-counter medications to the baby’s gums without first discussing this with your pediatrician and hematologist. If bleeding occurs, speak with your hematologist. A damp, soft baby washcloth kept in a clean plastic bag in the refrigerator or freezer can be helpful. Always remove the clean cold baby washcloth from the plastic bag before gently applying it to the gums. Do not rub the gums if there is bleeding or a clot. To avoid the possibility of choking, never leave the baby alone with the washcloth.

If you suspect a bleed, communication with your child’s hematologist is crucial. You may need to administer an infusion if you’ve been trained on how to do so. Or, you may need a bleeding disorder-trained nurse from your specialty pharmacy to visit your home for the infusion.


How can I help my child avoid or manage pain
  • Take steps to help your child avoid bumps or falls, and use protective padding when appropriate or advised.
  • Treat as instructed by your child’s hematologist at the first sign of a bleed to minimize pain.
  • Use a topical anesthetic cream before needle sticks, if advised by your hematologist, to avoid pain associated with the infusion process.
  • Discuss treatment options with your hematologist to minimize risks of bleeding episodes while allowing your child to remain active.
  • Only give your child pain medication that has been prescribed or recommended by a healthcare professional who is familiar with the child’s bleeding disorder.
  • Remember: Do not give any medication that contains aspirin or an NSAID (a nonsteroidal anti-inflammatory drug). These drugs can prolong bleeding. Read the label on any medication you use to see what’s in it. Also, check with your pharmacist when a medication is prescribed. Aspirin also can be listed as ASA (acetylsalicylic acid).2

A baby’s first year of life is an amazing time. It will seem as if your baby makes a new discovery every day. As a parent or caregiver, you will also be making new discoveries and learning about hemophilia. As your child grows, utilize additional valuable life stages sections here.

For additional information about hemophilia and your newborn’s development, pain management and safety, download:

pdf icon Living with Hemophilia: The Newborn Year (pdf, 157KB)
< Stages of life Toddler >
 

1. Johnson M, Gorlin JB. "Child development with a bleeding disorder and transition." Nurses' Guide to Bleeding Disorders. National Hemophilia Foundation. 2013.

2. Medical and Scientific Advisory Council of National Hemophilia Foundation. Recommendation #175: "Guidelines for emergency department management of individuals with hemophilia". October 2006. https://www.hemophilia.org/sites/default/files/document/files/175.pdf. Accessed Aug. 9, 2017.

Toddler (Ages 1 to 5 years)

Welcome to the wonderful world of toddlerhood – a time of rapid change and transformation. As children grow from 1 to 5 years old, they may advance from crawling to playing organized sports. As your child learns to crawl and to walk, the chances for bumps, bruises and bleeds increase. Learn key ways to help manage your child’s hemophilia and how you can help keep your child safe through the very active toddler and preschool years so you can let your child with hemophilia be just that — a child.


How will I know if my child has a bleed

Bleeds can happen in any part of the body, such as joints, muscles, the stomach area or head. If you have seen your child fall or get a bump, then you can check for a bleed. At other times, you may not be aware a bleed has happened, but you can watch for certain signs, such as:

  • Fussier behavior than usual
  • Not using the affected body part
  • Protecting the affected body part
  • Unusual amount of bruising
  • Swelling – compare the affected body part with the opposite side to determine the extent of swelling
  • Verbalizing the pain they are feeling

How can I help my child avoid or manage pain
  • Take steps to help your child avoid bumps or falls, and use protective padding when appropriate or advised.
  • Use gear (like helmets, knee pads, elbow pads, and shin guards) to avoid injuries
  • Avoid pain associated with the infusion process by using a topical anesthetic cream before needle sticks, if advised by your hematologist.
  • Discuss treatment options with your hematologist to minimize risks of bleeding episodes while allowing your child to remain active.
  • Ask your hematologist if you should use a pain-relief cream before your infusions to numb the area where the needle will be placed.
  • Only give your child pain medication that has been prescribed or recommended by a healthcare professional who is familiar with the child’s bleeding disorder.
  • Remember: Do not give any medication that contains aspirin or an NSAID (a nonsteroidal anti-inflammatory drug). These drugs can prolong bleeding. Read the label on any medication you use to see what’s in it. Also, check with your pharmacist when a medication is prescribed. Aspirin also can be listed as ASA (acetylsalicylic acid).1

Living with your child’s hemophilia may be challenging, but it can be managed. Keep its impact to a minimum, and focus on the beautiful child in front of you. With knowledge and a supportive team on your side, watching your toddler play, grow and explore will provide one of life’s greatest rewards. As your child matures, learn additional valuable information available in the other life stages sections.

For additional information about hemophilia and your toddler’s development, pain management, nutrition, dental care and safety, download:

pdf icon Living with Hemophilia: Your Toddler/Preschooler (pdf, 309KB)
< Newborn School age >
 

1. Medical and Scientific Advisory Council of National Hemophilia Foundation. Recommendation #175: "Guidelines for emergency department management of individuals with hemophilia". October 2006. https://www.hemophilia.org/sites/default/files/document/files/175.pdf. Accessed Aug. 9, 2017.

School-aged child/pre-teen (Ages 6 to 11 years)

Your child is entering an exciting new stage in life and development. Strollers and potty-training are a thing of the past, as are the initial encounters of living with hemophilia. As you move ahead to the beginning school years, it is important to understand the next level of development, milestones and issues related to hemophilia. Staying informed and prepared will help you continue this journey with your child successfully!


How can I help my child recognize and tend to bleeds

Since you can no longer watch every move your child makes, you must rely on your child to recognize and tell you or others about bleeds. He or she is probably very active throughout the day and may not be interested in slowing down to focus on treating bleeds. Identifying and treating a bleed promptly are essential to maintaining healthy joints and muscles.

Now is the time emphasis must be placed on:

  • Helping your child understand what a bleed is
  • Ensuring he or she knows how to identify a bleed
  • Understanding the importance of promptly treating a bleed
  • Emphasizing the importance of prompt treatment
  • Explaining the consequences of delayed treatment

How can I help my child become an active participant in his or her care

Children ages 6 to 11 can learn more in-depth detail about their disease and its treatment, such as when and how factor is given, as well as treatment options.

Here are some tasks you can give your child to help him or her become an active partner in his or her own care.

  • Keep a running list of all the medical supplies you have at home for hemophilia care (you can help with this). This helps you keep track of the supplies you have, to plan for your next order, and to be prepared for emergencies (such as natural disasters or times when supply delivery might be delayed).
  • Fill out treatment logs
  • Order medical supplies and log them on your list of supplies when they arrive at your home
  • Be an active partner with doctors, nurses and other members of his or her care team
  • Ask your hematologist if you should use a pain-relief cream before your infusions to numb the area where the needle will be placed.
  • Talk with teachers, coaches and others at school about hemophilia and special needs he or she may have. Download the Accredo Coach and Educator guide for detailed information.
  • Talk openly with other children at school about hemophilia and how your child manages it
  • Only give your child pain medication that has been prescribed or recommended by a healthcare professional who is familiar with the child’s bleeding disorder.
  • Remind him or her that medication that contains aspirin or an NSAID (a nonsteroidal anti-inflammatory drug) should not be taken. These drugs can prolong bleeding. Read the label on any medication you use to see what’s in it. Also, check with your pharmacist when a medication is prescribed. Aspirin also can be listed as ASA (acetylsalicylic acid).1

As a parent, you will be amazed at all the things your child will learn, experience and accomplish during this brief five-year span — from mastering cursive writing and multiplication tables to gaining independence and becoming more involved in his or her care.

This time provides a chance to bond with your child before heading into adolescence, a stage that has its own milestones and challenges. As your child matures, you will find additional valuable information about future life stages.

For additional information about hemophilia and your school-aged child’s involvement in care, general well-being, physical development and activity, pain management, nutrition, dental care and social interactions,download:

pdf icon Living with Hemophilia: School-Aged/Pre-Teen (pdf, 224KB)
< Toddler Teen >
 

1. Medical and Scientific Advisory Council of National Hemophilia Foundation. Recommendation #175: "Guidelines for emergency department management of individuals with hemophilia". October 2006. https://www.hemophilia.org/sites/default/files/document/files/175.pdf. Accessed Aug. 9, 2017.

Teen1 (Ages 12 to 18 years)

The teen years are times of rapid growth and change for children – a time that affects their body and their emotions. Teens face a lot of pressures and having a bleeding disorder adds to that pressure. For children, growing up with a disorder, such as hemophilia, affects the way they see themselves in the world, and can present extra challenges as they develop. For parents and other family members, having a child with a special need can create a sense of wanting to protect him or her from the world. Talk through the valuable information here with your teen to help him or her better understand how to manage his or her bleeding disorder.


How can I avoid pain

Some ways to ensure you avoid pain include:

  • Use gear (like helmets, knee pads, elbow pads, and shin guards) to avoid injuries
  • Ask your hematologist if you should use a pain-relief cream before your infusions to numb the area where the needle will be placed.
  • Treat bleeding episodes with prescribed factor, as instructed, immediately to prevent ongoing bleeding and further damage. Bleeding causes damage. Repeated damage from bleeding episodes can cause chronic pain and permanent joint injury.

Do not take any medication that contains aspirin or an NSAID (a nonsteroidal anti-inflammatory drug) These medications can prolong bleeding. Read the label on any medication you use to see what’s in it. Also, check with your pharmacist when a medication is prescribed. Aspirin also can be listed as ASA (acetylsalicylic acid) 2.


How do I identify a bleed

You may ask yourself the following questions to help determine if you’re experiencing a bleed.

  • Have I been less active than usual?
  • Is my appetite the same as usual, or have I been eating less?
  • Have I been sleeping more than usual? Or have I been unable to sleep?
  • Am I limping?
  • Is there a part of my body that I seem to protect, because it’s sore or hurts?
  • Is there a part of my body, such as my arm, leg, my stomach or side, that I’m using less or that I’m avoiding using?

How can I work through the pain

If you’re having pain, treat it right away. Don’t be afraid to let your friends or others know that you need to treat any pain right away.

  • Use the Rest, Ice, Compression, and Elevation (RICE) method if you have an injury
  • Be a partner with your healthcare team to learn what they suggest
  • If you’re really active in sports, ask your healthcare team if there are any proactive treatment options.
  • If your healthcare team orders pain medication for you, follow the instructions on the label.
  • Ask yourself these questions about the medication to see if it’s working for you:
  • How long am I comfortable after taking the medication?
  • Does it make me sleepy?
  • How many times do I need to take the medication in order to reduce pain?
  • Does my pain seem to be better or worse while I’m taking this medication?
  • If your pain doesn’t go away within a specific timeframe developed by you and your doctor, contact your hematologist to discuss it with him or her.

By age 18, hopefully you’ll be an independent individual who can make medical decisions for yourself. That includes ordering your own factor, infusing your factor, following your hematologist’s orders, filling out treatment logs, and taking care of your body. Remember, it’s your body and your hemophilia. As you continue to mature, you can find additional information later in this guide.

For additional information about hemophilia and your teen’s increased involvement in his or her care, pain management, nutrition, dental care, social interactions, exercise and entrance into adulthood, download:

pdf icon Living with Hemophilia: The Teen Years (pdf, 238 KB)
< School age Adult >
 

1. Johnson M, Gorlin JB. "Child development with a bleeding disorder and transition." Nurses' Guide to Bleeding Disorders. National Hemophilia Foundation. 2013.

2. Medical and Scientific Advisory Council of National Hemophilia Foundation. Recommendation #175: "Guidelines for emergency department management of individuals with hemophilia". October 2006. https://www.hemophilia.org/sites/default/files/document/files/175.pdf. Accessed Aug. 9, 2017.

Adult (Ages 18+ years)

By now, you probably know quite a bit about your bleeding disorder and how to manage it. As an adult, you also might be facing major changes in your life (such as starting college, taking on a new career, having a family, heading toward retirement years, experiencing a job loss or divorce or caring for an aging parent) that bring extra challenges. No matter which phase of life you’re in, there are some key areas to manage and actions you can take in order to help keep your condition under control and to remain as healthy as possible.


How can I keep myself healthy while managing my condition

In order to keep your health in line while managing your condition, you may want to consider the following tips.

  • Keep moving to keep your body healthy. Since bleeding disorders can cause joint pain and swelling, regular exercise also can help reduce this by keeping the muscles around the joints stronger.
  • Talk with your healthcare team about healthy foods and exercise to help you maintain a healthy weight.
  • Maintaining a healthy weight is important because:
  • Extra weight adds stress to your joints, and can increase joint pain and the number of joint bleeds.
  • Any extra weight on your body also can make it harder to find veins for your infusion treatments.
  • Since the dose of clotting factor is based on your weight, having extra weight can mean you have to use higher doses of clotting factor.
  • Stay connected with your healthcare team and ensure they are a partner in your care. Ask questions during appointments to better understand the care plan created for you.

How do I best manage pain

Below are a few brief tips to help you manage pain. Some of them might work for you, while others won’t. You can do some of these methods yourself, but your healthcare team might need to help you with other methods.

  • Follow your hematologist’s recommendation for your medication and treatment regimen.
  • Ask your hematologist if you should use a pain-relief cream before your infusions to numb the area where the needle will be placed.
  • Outline an exercise plan with your hematologist or physical therapist that best fits your needs and capabilities while keeping you safe.
  • Use RICE to reduce pain and stiffness due to joint damage.
  • Do things that help you relax and reduce stress – long-term stress can increase the physical and emotional effects of pain.
  • Keep a record or your pain, bleeds and infusions in a treatment log that can be shared with your hematologist.
  • Avoid injury to avoid pain – follow safety techniques during exercise and other activities.
  • Remember: Do not take any medication that contains aspirin or an NSAID (a nonsteroidal anti-inflammatory drug). These drugs can prolong bleeding. Read the label on any medication you use to see what’s in it. Also, check with your pharmacist when a medication is prescribed. Aspirin also can be listed as ASA (acetylsalicylic acid)1 .

For additional information about living with hemophilia in your adult years, nutrition, dental care, safety issues, insurance and pain management, download:

pdf icon Living with Hemophilia: Adulthood (pdf, 277 KB)
< Teen
 

1. Hemophilia Foundation. Recommendation #175: "Guidelines for emergency department management of individuals with hemophilia". October 2006. https://www.hemophilia.org/sites/default/files/document/files/175.pdf. Accessed Aug. 9, 2017.