Things to Know
When you raise a child with hemophilia and inhibitors, there is a lot to know.
The main thing you should know is when to contact your doctor or hemophilia care team.
The information below will help you better know when you can care for your child — and when it's best to call your doctor or hemophilia treatment center.
Bumps, Bruises, and Minor Accidents
As soon as a child starts to crawl and climb, bumps and bruises become unavoidable. Even in a child with hemophilia, these are not usually painful. So, if your child has a minor accident, there is no need to be scared or alarmed. But do keep an eye on him.3,11
Minor bruises, nosebleeds, and mouth bleeds do not usually need emergency attention.3,11
If a bruise does not go away, gets bigger over a few hours, or is on the head, neck, throat, joints, or groin, please contact your doctor or hemophilia care team immediately for advice.3
Your doctor or hemophilia care team should check all head injuries, even if there is no visible sign of injury.11
How to Recognize and Deal with Bleeds
If your child has moderate or severe hemophilia with inhibitors, he may sometimes have bleeds that don't have a clear cause or might be due to a minor injury. (People with mild hemophilia are unlikely to have bleeds because of everyday minor accidents.)4,8
It is important to learn how to recognize bleeds if they do happen. As a caregiver, it's a good idea to get into the habit of taking a careful look every day.
Here are some tips to help you know what to look for:24
Look at your child's skin at changing or bath time
- Are there any new bruises?
- Are both legs equal in size? And arms? Are they moving the same way?
- Is there any bruising or swelling in the diaper area?
Bumps to the head7,11
- There may be visible swelling, lumps, or bruising
- There may be no mark at all — but always ask your doctor or hemophilia treatment center when a child with hemophilia and inhibitors has a bump to the head
Bleeds in the mouth, stomach, intestines, or urinary tract
- There may be bleeding from the mouth or tongue7
- Urine may be red or brown3
- Bowel movements may be bloody or black tar-like24
- These can go on for longer than normal and can happen more often4,11
Contact your doctor or hemophilia care team immediately if any bleeding won't stop, if something seems like it might be serious, or just aren't sure and have questions.7,11
6 bleed locations can be very dangerous. If not treated quickly, they can become a threat to life, the use of an arm or a leg, or extremely important body functions. They include:
- Head (intracranial) bleeds4,7
- Neck bleeds4,7
- Throat bleeds4,7
- Stomach (abdominal) bleeds4,7
- Groin/Kidney bleeds3,11
- Eye bleeds3,11
If your child has one of these bleeds, contact your doctor or hemophilia care team immediately.
What to Do about Bleeds?
Basic first aid works for people with hemophilia and inhibitors, just like everyone else. Bleeds in patients with inhibitors should always be treated under the guidance of your doctor, nurse, or hemophilia care team.3,11
If you think that an injury is a problem — or related to hemophilia — contact your doctor or hemophilia center for advice immediately.11
It is always better to seek advice than to let a problem go untreated.
Take Care to Avoid
Bleeds can be painful. But, in dealing your child's pain, it is extremely important to avoid giving them any medications with ASA (acetylsalicylic acid), or non-steroidal anti-inflammatory drugs (NSAIDs) — like ibuprofen — while bleeding occurs. Talk to your doctor or check the medication's label if you are uncertain.11,13,15
These pain drugs might make bleeding last longer, so they are best avoided.3,13
Acetaminophen, also known as paracetamol, can be used without prescription in most countries. It may be an option for pain relief.4,11,15
Learn to Recognize the Signs of a Joint Bleed
As a caregiver for a child with hemophilia and inhibitors, it's very important to learn to recognize the signs of a joint bleed. These may be3,7:
- A feeling of tightness in the joint; there may be no pain or visible signs of bleeding
- Feeling of warmth or heat when touched
- Pain on bending the joint
- Avoiding straightening or using the arm or leg
- A baby who is crying or fussing for no apparent reason may be having a joint bleed