Understand What Kind of Hemophilia your Child Has

4 Parts:

The Technical and Practical Differences among Factor Levels

How Bleeding is Treated

Tips Tricks & Warnings

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It is important to know what type of hemophilia your child has. Learn immediately whether he has factor VIII deficiency or factor IX deficiency. Next, learn his severity level, which tells you whether he is severely, moderately, or mildly affected. There is a big difference! Because of their severity levels, two children with factor VIII deficiency can have very different types of bleeds. Levels of severity refer to how much factor is working in the bloodstream. For example, your child could have severe, moderate, or a mild factor VIII deficiency.

Technically, the differences among the three levels of factor deficiency relate to the level activity of factor, not its absence. Your child may actually have a normal factor amount. It may function at a reduced level of efficiency, and levels are usually hereditary. If your child's test comes back as severe, moderate, or mild, he will most likely always test that way. Among the general population, the range of normal factor activity is 50% to 200%. High factor levels are often found in pregnant women or people who have recently completed vigorous exercise. People whose levels are 20% to 50% often do not exhibit unusual clotting behavior, although their levels are below normal.

This is fine for the lab technicians, but what about you as a parent? What does this mean in practical terms? I can tell you what it means in general; but for you personally, only experience can tell you about your child.

1. 1
   Sever Hemophilia

   :

   Less than 1% of factor active in the bloodstream.

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2. 2
   Moderate Hemophilia

   :

   1% to 5% of factor active in the bloodstream.

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3. 3
   Mild Hemophilia

   :

   Less than 5% to 50% of factor active in the bloodstream.

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Classifying mild and moderate hemophilia by number of bleeds children experience can be confusing to some parents. Don't be misled by reports in some hemophilia literature that a mildly affected child usually bleeds as a result of identifiable injury or surgical or dental procedures. This means (but not always) that severely affected children bleed more often. How frequently is hard to estimate because every child is different. Statistics show that severely affected children receive an average of one infusion (injections of the medicine factor) per week, with a range of 20 to 100 infusions per year. Moderately affected children may receive one or two infusions per month. Children affected mildly bleed a lot less, so often bleeds go unrecognized.

Many children today use prophylactic therapy to hinder bleeds. Honestly, it's true! Prophylaxis is the infusion schedule of factor to prevent many bleeds from happening. I even know children with hemophilia who have never had a bleed, because they are on prophylaxis. I, also, know children with severe hemophilia who bleed rarely, and some who are moderate and bleed more often! There are so many possibilities. You will learn your child's pattern. You may be eligible for prophylaxis.

1. 1
   To stop a bleed, your child will have his missing factor VIII or factor IX replaced through an infusion, into his vein

   .

   This is called factor replacement therapy.

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2. 2
   Once the factor is infused, the normal chain of events that leads to clotting can take place

   .

   The fibrin net--a clot--will form.

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3. 3
   As a parent, you must know your child's factor deficiency and level (for example, moderate factor IX), because this will determine the specific therapy he needs.

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4. 4
   Children with factor VIII deficiency receive factor VIII replacement therapy

   .

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5. 5
   Children with factor IX deficiency will receive factor replacement therapy.

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6. 6
   Factor starts working immediately but stays in the blood stream for only a limited time

   .

   Even for those people with normal blood clotting ability, the factor that is constantly produced in the liver and released into the blood stream is used up, or degraded.

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7. 7
   The body uses up factor like food and the body must replenish it

   .

   Parents who are unaware of this often think their child will be cured if he can have a complete blood transfusion from a person with normal factor production.

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• Remember that every child is different, even among those classified as severe factor VIII or moderate factor IX.
• Remember that being a responsible parent and good advocate for your child means knowing the possibilities and being prepared.
• Remember that your child will recover.
• Remember that the speed of his recovery will depend on the extent of his injury.
• Remember that an infusion treats them but does not cure them.
• Remember that your child is unique.

If you have problems with any of the steps in this article, please ask a question for more help, or post in the comments section below.

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