I believe my son Glen was misdiagnosed.
Let me start from the beginning. Glen is a Hemophiliac so when he got a mouth bleed from what we thought was a tooth coming in we did not think anything of it. We would normally infuse every other day until the tooth came in, other medications to help stop the bleeding and soft foods. When the bleeding did not stop it meant that we would have to have the tooth taken out. We tried to go to our dentist who refused to see him for an emergency visit. They new he is a hemophiliac and still refused to see him. We ended up going to 5 dentists who stated that he had an impacted wisdom tooth. Now all we had to do is find an oral surgeon that would see him. We were turned away from oral surgeons once they heard that he is a hemophiliac. All this time his is bleeding uncontrollably, I was afraid to sleep because I thought he would not be with us in the morning.
It took us 2 months to find a surgeon that would see him. His hematologist stated that they could not do anything but control the bleeding which was not working to well. The medication that was supposed to save his life was not working any more. So, anyway, all the dentist stated that Glen had an impacted wisdom tooth which was correct but the oral surgeon that saw Glen stated that he had a tumor and that is what was causing the bleed. He also stated that the wisdom tooth was not the cause of his problems. I was upset because no one said anything about a tumor. He was in surgery with in a few days, we thought it was over but it wasn’t. Glen had 4 surgeries with in 5 months to remove the reoccurring tumor. The surgeon saw us every other day after the 2nd surgery; we were going to see the surgeon for 1 month shy of a year. Glen missed about 4 months of school, I was depressed and so was Glen. The surgeon thought the reoccurring tumor was caused my plaque but that did not make any since because I was making sure we followed his orders regarding keeping Glen’s teeth clean. The surgeon was getting frustrated and so was I. I felt like we were getting no where this tumor was taking over our lives.
The tumor was sent to the pathologist 2x and it came back benign 2x but were they looking for anything else? I don’t know. I am in the process of getting his medical records to take to a doctor who has seen people with odontogenic keratocyst (OKC).
The tumor ate away his jaw bone so the surgeon put in artificial bone 2 times. The last time the surgeon did not replace the artificial bone hoping it would grow back. The bone is starting to grow back. The tumor was fast growing and caused uncontrollable bleeding. His hematologist stated that new blood work during that year showed a vitamin D deficiency, so he was not a new medication that was not covered by my insurance and was $50 a pop. There were also levels off in his liver and kidneys but I forgot the name of the levels that were High and Low.
I am hoping someone will read this and help us gather additional information. Thanks for reading this long post