MY SON HAS HAEMOPHILIA

[crazymumo4]

I am a mum to 3 boys, the youngest has severe haemophilia A. He is 4 and has just had his first joint bleed. He has been lucky so far, having had no major bleeds. We really want to meet another family going through this so that he can realise that he isn't the only one. There must be somebody out there!

My cousin has got haemophilia - same type, severe. Obvs I haven't experienced it first hand like you but I do know that he grew into a strapping lad who is very clever, very sporty (swims, cycles) and very lovely. He injects every day and has been doing it himself since he was about 13. He is 20 now! Had a couple of joint bleeds IIRC, but these were treates properly and thankfully so far no major probs. Hope you are okay and sorry I can't be that much help. x

No, that's great! My son's nurse want's us to start prophylaxis aswell but we are a bit scared of the responsibilityof injecting him ourself. But obviously if it's best for him, we will of course go ahead.
Thanks for the input shrooms

so sorry to hear of his illness but pleased that there's a treatment. We inject our son many times daily for his diabetes - we have to and it's amazing how quickly everyone gets used to it.

Glad it helps. Yeah I'd say go for the prophylaxis as even though there is the small burden of a daily jab, which he'll quickly get used to, there is the much improved freedom and very much reduced risk of joint bleeds if his factor 8 levels are almost normal almost all the time x

My DH has severe haemophilia A - i think his clotting factor is undetectable. There was no family history of it. The haemophilia society are pretty good and organise meetings and I think the haemophilia centres are a big focus as they will spend a lot of time there! On the plus side that means that they will build up close relationships with the drs and nurses responsible for their care (my DH's main nurse and consultant came to our wedding!).

Re the treatment, my DH didn't have prophylaxis as there was such a high risk from contaminated blood in the early 80s which is pretty insignificant now so don't worry about that. I think this made treatment more difficult as MIL used to administer the jabs but it was a case of dragging a screaming DH (as a baby obviously) out from under his bed to inject him! If you do prophylaxis your DS is likely to get used to it pretty quickly and just accept it as something that has to be done.

Also FWIW, my DH is very active (we go hillwalking and sailing) and is a solicitor in a London firm. Whenever he has a bleed now, he fires up the laptop, puts his feet up and works from home so it doesn't really have much of an impact any more. Good luck, let me know if you'd like to chat or speak to DH.