January 1, 2011 : New Years Goal- BRING THIS BABY HOME!

First, let me introduce you to "Kyle". Kyle is in an orphanage in China. This is his photo and description from the orphanage:


Photobucket

ChildID/Name, Birthdate: Kyle, 12/28/1007
Location, Gender: Asia, Male Agency: Wasatch Adoptions
Details: "This sweet little boy has Hemophilia (A Grade). His caretakers say "He is so lovely, likes to play with other kids, he likes to put on new clothes, likes to play with aunt, and its interested in the toy car which he can move. He is handsome, extroverted, and active. We all like him and hope there is someone familiar with this disease who could love and care for Kyle so he can lead a full life with his very own forever family."

As of April I know:
- That he was abandoned at 8 months old in a hospital in Shanghai with a brain bleed due to a fall from a bed, and intramuscular bleed due to IM injection, as well as respiratory infection and anemia.
- That he has had many bleeds so far including GI bleeds and shoulder bleeds.
-That every report I have read so far from the hospital shows him as malnourished and with respiratory infections.
- That he does not sing because "in the instution they do not sing or play music"
- That he likes to play with the other kids, and his aunties and caretakers, and seems behind in some areas only because he cannot attend preschool because of his Hemophilia.
-That he is not allowed to go outside to play because of his Hemophilia.
- MOST OF ALL I KNOW THAT I LOVE HIM AND NEED TO GET HIM HOME AS SOON AS POSSIBLE!

Treatment for Hemophilia

In America there are specialized treatment centers (called HTC’s) that have specialists that cover a multitude of concerns that would be able to assist people with this and other blood disorders. Some of these areas are social workers, hematologists (both adult and pediatric), dentists, gynecologists and several others.

For those with mild hemophilia, small cuts and scrapes are treated as usual and additionally a non-blood product is added (DDAVP) for treating minor bleeding incidents. Treating major bleeding incidents or bleeding into the joints and muscles are treated by giving the patient the missing factor (VIII or IX). This is the only way to solve these problems as they arise.

For major bleeding injuries, The Medical and Scientific Advisory Council of the National Hemophilia Foundation has recommended using recombinant blood products, which are blood factors made with products that are produced in a lab as opposed to donated blood products. These products are recommended because they tend to be safer and the chance of getting AIDS is greatly diminished since transfusion of donated blood products has been known to be a cause of AIDS. It is recommended that those (most often children) with severe hemophilia (both A and B) be given regular preventive doses of the missing factors. This is called Prophylaxis.


Prophylaxis is the regular use of clotting factor concentrate administered to prevent bleeding episodes. As a result of reduced bleeding, prophylaxis can help to decrease or prevent joint damage as well as preserve joint function. The same study also reported the effectiveness of prophylaxis in reducing the occurrence of life-threatening bleeds. In countries with access to adequate quantities of clotting factor, prophylaxis is becoming common practice to treat younger individuals.
In a person with severe hemophilia A, the treatment goal is to keep the factor VIII level in the blood above 1%.3 This may be achieved by using prophylaxis. Prophylactic treatment should be given on a routine schedule, such as one to three times per week, to help prevent bleeding episodes in individuals with severe hemophilia A. Prophylaxis helps to maintain a constant level of factor VIII in the person's blood so bleeding is less likely to occur from injury or as a spontaneous episode.

Ports and Central Venous Access Devices (CVADS)
A parent or caregiver may choose to have an implanted central venous catheter to make infusions easier, especially for young children receiving prophylactic treatment. This device is surgically implanted under the skin in the chest or arm, and it is used as a portal for administering clotting factor replacement into the blood. It enables the product to go directly into a vein and into the bloodstream. A central venous catheter eliminates multiple needle injections for administering product. However, infections at the access site have been reported, and clots at the tip of the device have also occurred. A parent or caregiver must weigh the risks versus the benefits. A healthcare professional can assist you with this decision.