blood clotting disorder/hemophilia

[jess_paez]

the medic alert id thread got me thinking about my sons hemophilia. i have been wanting to buy him a bracelet. he is 4 months and has moderate hemophilia B. so far he has had zero bleeding episodes.
can you share your stories?

[mbravebird]

Hi!

My son has severe Hemophilia B. We have an intense story, but everything is OK now. He had a head bleed and emergency brain surgery two years ago. But head bleeds are very rare for moderate hemophilia, and they're even rare for severes.

Since his head bleed, he's been on twice-weekly prophylactic infusion of replacement factor. We started doing the infusions ourselves, because he's a hard stick and I was more successful than the nurses were. That's sometimes been hard on us, just because when we have hard infusions, where we can't get his veins, it really affects all of us. But for many, many people, infusions at home are easy.

With moderate hemophilia, you'll really have to wait to see what his bleeding pattern is. Some moderates bleed more like severes, and in that case you may want him to go on prophylactic infusions. But most moderates just need occasional on-demand infusions, in response to an injury, etc. And you're absolutely right that you need a medicalert bracelet. Sometimes moderates get joint bleeds, which is something you'll need to watch out for. My son has had a bunch of joint bleeds as he's gotten older, but in the early years there were not very many. I would say that this first year is the time that you can relax a bit and research, find a hematologist you like, etc. The toddler years may be more challenging.

My son is also very very happy, and loves life and lots of activities. He just told his new first grade class all about his hemophilia today, and didn't want any help from me. He's doing great. I'm so lucky to be his mom.

I'm glad to meet you! It's always helpful to talk to other parents. So, hello to you and your precious little guy!

ETA: Are you being seen by a Hemophilia Treatment Center?

[jess_paez]

thanks for the reply mama! we are seen by a hemophilia treatment center. my dad has moderate hemophilia as well and we see the same specialist. they are GREAT! really wonderful people. so far kai hasn't had any episodes, he is 4 months-i expect that there will be times during his life that he will need factor. the specialist told me to expect a similar pattern as my dad-because my dad is moderate kai is expected to be the same. my dad has only had issues because he did play football in junior high (this was before they knew of his hemoph.) and because of a minor (but quite serious because of his medical cond.) lawn mower accident. and of course his wisdom teeth surgery.
did your son inherit it from your dad and you're the carrier?
what your family has to go through sounds so tough! but your son seems to be so strong it's good he is not ashamed of it. were you expecting your younger son to have it as well?
one more question, how does your insurance work? we are enrolled in michigans childrens special health that covers his medical condition for life-whatever our ins doesn't cover first.