Hi. My name is Sam. I have a four year old boy with Hemophilia and I'm expecting a mystery baby in August. My son had an inhibitor level of 500 bethelsda units at one point and is now treated with Novo Seven. He suffers from superficial bruising and minor accidental injuries that I was told by his doctor not to treat him for. Since then, his Inhibitor level has dropped significantly, but just recently it went from 19 units to 34. The doctor (hematologist) suggested I have no more children, so when I went this last time he looked at me ugly. I treat my son daily and it seems to me that the 2MG he is receiving a day isn't enough for him to affect his inhibitor. I feel like the doctor isn't listening to me, and more so I feel as if he is attacking my parenting skills by also telling me my son's weight (59lbs) at four could be an issue. Since this is the only HEMOC group in lower AL, I feel like I'm running out of options, but it seems like every time I tell these people how it really is- they dissmiss it because it isn't "right", like I'm not in touch with my childs needs. (For exampe, the nutitionist we see won't even talk to me) It really makes me question this next baby and if I am "right".
I have a 15 year old girl with Hemophilia. She has it pretty mild over all. Bruising and swollen joints. We don't have to give her anything for it , just be aware of how bad the bruising can be and when to take her to Emergency . Like if there was a cyst in the middle of the bruise ,that sort of thing.
Now my second daughter doesn't have it at all ,but she's a carrier of it. I would suggest Momma that you continue doing what you are doing with him because you DO know how to care for his needs. Try a different doctor/nutritionist that will work with you not make you feel like a bad parent.
I'm new here so haven't figured out how old these post actually are but the Dr shouldn't tell you to not have more children. I have one son with Hemophilia A. One without. Three daughters. One carrier one that isn't and one we havent had tested. So it is just a matter of how much you can handle and knowing that you can possibly pass hemophilia on to the kids. About the inhibitors. I don't know much about them can't offer advise there.