Face the First Challenges of a Hemophilia Diagnosis

Edited by Lor777, Anonymous, Reema

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After your child is born, you usually have time to prepare for these challenging situations. On the other hand, although you can consult with doctors, read materials, and speak to other parents, you will gain control only gradually over hemophilia's effect on your live, with each experience. Prepare for the things that might happen, and try to maintain perspective. Although it would be extremely unusual to get struck by lightning, still you know not to stand under a tall tree during a thunderstorm. Similarly, you should know that although some types of bleeds have just as remote a chance of happening, you must still learn about them.

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If your child is on prophylaxis, you won't have to worry about most bleeds. If he is not on prophylaxis, the great news is that as your child grows older and can talk and understand, he'll be able to tell you how he feels. You'll be able to respond quickly to his medical needs yourself. Until then, read the next section on types of bleeds to ensure that you are prepared for all things, keeping in mind that the majority of children never experience them at all.

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Types of Bleeds

You have probably noticed that some children are injured more easily than others; some people even say, "I bruise easily." It's the same with our children with hemophilia. Because every child is different, even children with the same deficiency and level will experience bleeds in different ways. In other words, it's hard to give clear, straightforward bleeding classifications. We can say for certain that your child's cuts and injuries will not bleed faster than anyone else, just longer. The bleeds that should concern most parents are internal bleeds into the joints, muscles, body cavities, and internal organs.

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Some parents ask, "My child just has mild hemophilia. What can we expect when he is injured?" It's difficult to strictly classify children by their bleeds. Many things influence how your child will bleed, and the possibilities are endless. Some children with severe hemophilia always have joint bleeds, some only occasionally. some children with mild hemophilia will never have infusions unless facing surgery or dental work, whereas others may have bleeds similar to those with moderate or sever hemophilia.

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One thing is certain: Regardless of his factor level deficiency, your child will be treated according to the type of bleed he experiences. Bleeds are usually categorized as minor, major, or severe. Minor bleeds are those that can be treated without factor replacement or treated with factor replacement early enough to avoid long-term damage. Major bleeds cause swelling and pain and require factor replacement. Severe bleeds can cause permanent damage or occur in areas of the body that make them life threatening. The classifications are important because they help determine whether your child will receive factor, and the dose or amount of factor needed.

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Minor Bleeds

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A minor bleed is any bleed that is caught just as it starts. Your child will feel that he is bleeding, usually as the bleed begins. Minor bleeds can include muscle and joint bleeds that have no visible signs like limping or stiffness, but your child feels he is bleeding. Minor bleeds can become serious if not treated right away. Minor bleeds probably won't need treatment. Types of minor bleeds are:

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  • scrapes to the knees
  • bruises
  • superficial mouth bleeds and superficial cuts
  • most nose bleeds

Bruises are bleeds that occur in soft tissue under the skin. Bruises seldom require treatment, even when they appear in lovely shades of dark red, purple, or blue. Two warnings, however, about mouth bleeds. First, although most mouth bleeds will be simply a nuisance, blood can seep into surrounding tissue like the tongue, enlarging it and making swallowing or breathing difficult. Second, blood can, also, seep down inside the throat. If this happens, it will probably be a slow process, so remember to check periodically for swelling. Although, we down play minor bleeds, they can be cause for concern if they continue for a long time. Bleeds that continue for a few days should be treated because the lead to blood loss and anemia.

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How to Treat Minor Bleeds

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  1. 1
    Minor bleeds require factor to decrease swelling, pain, and damage to the muscle or joint.{
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  2. 2
    Applying ice to a bruise may limit its spread.
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  3. 3
    Applying ice to the nose or back of the neck during a nose bleed may help stop blood flow.
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  4. 4
    Use first aid treatment, such as adhesive bandages and applied pressure for cuts and scrapes.
    These rarely need replacement therapy unless bleeding is prolonged.
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  5. 5
    Mouth bleeds are usually minor but often take a long time to heal because, the mouth is moist and very mobile.
    Sometimes these bleeds require infusions if they do not appear to be healing on their own.
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Major Bleeds

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Major bleeds involve swelling and pain. They include joint and muscle bleeds that limit motion and even mouth or external bleeds that cannot stop on their own. Muscle bleeds are serious in certain areas of the body, because if they swell too much, they block nerves, potentially causing permanent nerve damage and paralysis. Some muscle groups are large and can hold a great deal of blood. These muscle bleeds are more likely to cause permanent damage if treatment is delayed. Muscle bleeds can be deep and take a long time to reabsorb. It is said that whereas a bleed into a joint consists of about one teaspoon of blood, a bleed into a muscle is equivalent to more than ten teaspoons of blood.

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How to Know the Difference between a Joint Bleed and Muscle Bleed

  1. 1
    Muscle Bleeds:
    Usually require treatment. When your child senses a muscle bleed early on, he can receive immediate treatment and feel little discomfort. Muscle bleeds are difficult to detect in young children and infants, because you cannot always see them. They may not even show any bruising. Usually, the muscle will appear enlarged or will have a lump. The child may avoid using the affected limb or may limp. Other symptoms include the following: A warm feeling in the muscle, enlarged veins, and numbness and pressure on veins.
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  2. 2
    Joint Bleeds:
    Are bleeds into the elbow, knee, ankle, wrist, shoulder, hip, foot, or finger. There is a space within any joint where the two bones meet and where blood can readily seep and collect. This causes swelling and can cause the joint to lock. Joints take a lot of abuse in children; the pressure from normal running, jumping, and crawling can cause spontaneous bleeds (without apparent injury) in children with severe hemophilia. Moderately and mildly affected children can get joint bleeds following obvious injuries, but some moderately affected children, like my son, get joint bleeds randomly and spontaneously. Following are the symptoms of a joint bleed: Swelling, reluctance to use the affected body part, limping if the hip, knee, ankle, toe, or foot joints are involved, and a warm tingling sensation in the affected body part.
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Severe Bleeds

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Severe bleeds are potentially life threatening or can cause permanent nerve damage. With prompt and proper treatment, however, there is little risk even if your child is not on prophylaxis. Reading about all these bleeds, you may think you're expected to brace yourself for anything! I know it may seem overwhelming and frightening to read about these possibilities. But try to put this in perspective: If you were to list every danger you might encounter in the coming year, how long would that list be? It could be page after page, from simple dangers, such as sticking your finger with a sewing needle, to extreme dangers, such as being struck by lightning. How many of these dangers might you encounter? Very few. And how many that you do encounter will actually harm you? Maybe none, if you take proper precautions.

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Types of Severe Bleeds

  • bleeds from any surgery and dental work
  • bleeds in the "danger zones":
  • muscle bleeds in the forearm, calf, groin, abdomen, or iliopsoas
  • bleeds in the throat, neck or eye region
  • gastrointestinal tract bleeds
  • head bleeds

Different Types of Severe Bleeds

  1. 1
    Iliopsoas Muscle Bleeds:
    Occur in the uppermost part of the thigh, where the thigh muscle connects to the hip bone under the groin. Bleeding symptoms include pain and limping.
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  2. 2
    Throat Bleeds:
    Occur in the space at the back of the mouth, they may be difficult to detect and are easy to misidentify. Symptoms include swelling of the tissues inside the mouth or on the neck, choking, difficulty swallowing, vomiting swallowed blood, and pain.
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  3. 3
    Neck Bleeds:
    Are equally serious because they also can obstruct an airway.
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  4. 4
    Eye Bleeds:
    Are serious because of potential loss of eyesight due to pressure on the optic nerve. Also, the eye sockets offer a pathway to the brain, where blood can seep.
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  5. 5
    Gastrointestinal Bleeds:
    Occur in the stomach or intestines. Symptoms include coughing or vomiting blood, bloody stools or black, tar like stools; stomach pain and swelling in the abdomen.
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  6. 6
    Head Injuries:
    Can include any type of trauma to the head from a bump on the head, as when two children collide on the playground, to more serious concussions that cause sever symptoms.
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How to Detect Symptoms of a Head Bleed

  1. 1
    Neck stiffness
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  2. 2
    Sensitivity to light
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  3. 3
    Vomiting or projectile vomiting
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  4. 4
    Unequal pupil dilation
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  5. 5
    Ear fluid leakage or dizziness
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  6. 6
    Lethargy, sluggishness
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  7. 7
    Incessant crying
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  8. 8
    Loss of consciousness
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  9. 9
    Lack of appetite
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  10. 10
    Irritability
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  11. 11
    Seizures
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Tips Tricks & Warnings

  • Always call your hematologist if you suspect a muscle or joint bleed.
  • Joint bleeds can become very painful and should be treated immediately to help avoid pain and swelling.
  • If your child appears to have a stiff or swollen neck or the mumps, call your hematologist immediately.
  • Pain, bruising, swelling, black eyes should be reported to your hematologist.
  • When in doubt about a bleed, INFUSE!

Questions and Answers

External bleeding knee?

Yes, external bleeding can be a challenge for a person that has this problem. The best advice for you to do will be to assess the bleeding as soon as possible so that you do not bleed for an extensive amount of time.

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Knee bleeding internally?

If your knee is bleeding internally, you should be able to feel some pain. Also, if the bleeding is towards the skin side, you should be able to see some marks on your skin, similar to a bruise, but no opening on the outside. If you notice these types of symptoms, it would be worthwhile to consult your doctor. The pain may also increase over time, especially if you tend to move around. Not only will this be very uncomfortable, it may also be a sign of serious conditions.

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Categories : Blood Disorder & Issues

Recent edits by: Anonymous, Lor777

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