My son is 12 years old. He is a very sweet hearted special boy. I have never met anyone like him ever. I know he is my son, but those who know him will tell you the same. I always get compliments on him and how wonderfully sweet he is.
When he was about 1.5 -3 years old he would always cry that his ankles were huring him. We couldn't figure out what the problem was. I took him to the Dr. several times because he would get hematomas all over his body for no reason. The Dr. would do basic CBC counts which calculate your red blood cells, white blood cells among several other facotrs. The Dr. would say time after time that he was a normal kid that was rough housing and bruising. I took him to the Dr. when he was three for a routine vaccination. His regular physician that has been our Dr. since Reanna was born was not there that day. She was a Physician Assistant. That time nathan had a bruise on his back. She called me later that afternoon and told me that she would have to call child protective services as a precautionary protocal because of the bruising. I told her that I would be calling the medical board to report that I have taken my son to the Dr. on several occasions regarding this same issue and complaining that he did not rule out ALL things and that I felt it was malpractice. The Dr. called me back and apologized sharing how he knew I was a good mother and that she made a mistake. AT that point I demanded that he see a Hemotologist and this is where it all started. At 3 we found out that he had Von Willebrands Disease and moderate Hemophilia A. To our surprise no one in my family has hemophilia, I still do not know if I am a carrier or if it was mutated in him at birth.
My daughter also stands the chance of being a carrier. We took her to the Dr. and had them do levels on her clotting factors, but I just found out 2 days ago that its the DNA that tells whether you are a carrier. You can have normal levels and still be a carrier. I haven't broken the news to her nor anyone else for that matter...
Since then he has had 3 portacaths for prophylactic Factor XIII, a chest tube, bronchial lavage and bronchoscopy. To date he has had 7 surgerys and will undergo 2 more in the next 2 months to take out his current bad port and replace it with a hopeful functioning port. His 1st port lasted 8 years, it was as if my son was normal and giving him factor 3 times a week was like making breakfast. Then the heall started last year. Please read on...
http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=180&contentid=45&rptname=bleeding
When he was about 1.5 -3 years old he would always cry that his ankles were huring him. We couldn't figure out what the problem was. I took him to the Dr. several times because he would get hematomas all over his body for no reason. The Dr. would do basic CBC counts which calculate your red blood cells, white blood cells among several other facotrs. The Dr. would say time after time that he was a normal kid that was rough housing and bruising. I took him to the Dr. when he was three for a routine vaccination. His regular physician that has been our Dr. since Reanna was born was not there that day. She was a Physician Assistant. That time nathan had a bruise on his back. She called me later that afternoon and told me that she would have to call child protective services as a precautionary protocal because of the bruising. I told her that I would be calling the medical board to report that I have taken my son to the Dr. on several occasions regarding this same issue and complaining that he did not rule out ALL things and that I felt it was malpractice. The Dr. called me back and apologized sharing how he knew I was a good mother and that she made a mistake. AT that point I demanded that he see a Hemotologist and this is where it all started. At 3 we found out that he had Von Willebrands Disease and moderate Hemophilia A. To our surprise no one in my family has hemophilia, I still do not know if I am a carrier or if it was mutated in him at birth.
My daughter also stands the chance of being a carrier. We took her to the Dr. and had them do levels on her clotting factors, but I just found out 2 days ago that its the DNA that tells whether you are a carrier. You can have normal levels and still be a carrier. I haven't broken the news to her nor anyone else for that matter...
Since then he has had 3 portacaths for prophylactic Factor XIII, a chest tube, bronchial lavage and bronchoscopy. To date he has had 7 surgerys and will undergo 2 more in the next 2 months to take out his current bad port and replace it with a hopeful functioning port. His 1st port lasted 8 years, it was as if my son was normal and giving him factor 3 times a week was like making breakfast. Then the heall started last year. Please read on...
http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=180&contentid=45&rptname=bleeding
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