My son has severe haemophilia,

[patjoseb]

Hello! I am a mother of 3 boys, the youngest of which has severe haemophilia. He is 14 months and it hasn't really affected him yet. He has had no bleeds, but quite a few unsightly bruises.
I know that the severity runs true in families, and my family have all been severe sufferers, but when my son was last tested, his clotting factor was 7. The doctor said don't get my hopes up, numbers don't really mean anything. But I have. Does anybody have any experience or anybody with haemophiliac boys?

Hi patjoseb,

Just wanted to say welcome to the SN board . Sorry I can't help you with your question, but hopefully someone here will be able to (or will know someone else with similar experiences to yours).

hi patjoseb, i don't have direct experience of this but hope someone else can help you, and welcome btw. (where do you live?)

Also can't help with your enquiry, patjoseb, but another welcome from me - hope there is someone out there with haemophilia experience to share with you.

my friends dad has haemophilia, dont suppose that is much help to you though! welcome to mumsnet anyway

I'm in Wimbledon. I don't know anyone else with haemophilia, apparently it's not that common! My dad had haemophilia, but it was a very serious problem a few years ago. Its all changed now. There is alot of treatment these days.

patjoseb, I dont have any personal experience, but I can tell you a bit from a genetics point of view. It's true about the severity within families to the extent that the major effect on severity is what mutation you have, but it has been shown that there can be variation within families caused by different modifier genes. It may be that your son has a particularly good combination of these modifying genes. I hope so

Thanks for that, I knew I wasn't clutching at straws!

Hi patjoseb

My ex-dp (and current good friend:-)) has very severe heamophilia. He was in hospital for most of the first couple of years of his life :-( and had lots of major bleeds and problems as a child.

The good news though, is that he's now in his early 30's and fine. He's got a bit of damage to his joints from various bleeds over the years, but he lives a completely normal life. He and his dw are getting ready for their first baby :-)

You're absolutely right that haemophilia can be very very well managed these days (my friend hasn't had a serious bleed for years and years), so need not have the same impact on people's lives as it did in previous generations. Even if he had very low levels of clotting factor (like my friend), there is no reason that your little boy's condition can't be very well controlled, and it sounds like you have good reason to be hopeful that his levels aren't all that low. I would have thought that the fact it hasn't affected him yet was a very good sign.

Good Luck!

footstep
x

Hi Patjoseb,

Sorry I have no experience but I just wanted to say hello and welcome to the SN board.

Hi Patjoseb, Welcome to mumsnet. I don't have any personal experience of Haemophilia, but my dh (known on here as Spamhead) used to work for the Haemophilia Society. Have a look at their website

Hope that helps. See you around

I have been a member of the Haemophillia society for years now as my father had it. They are brilliant!
The doctors told me that the chances of my son not being severe were about 1 in 10,000. Not very good odds there, but he's doing so well, I'm begining to think he's that one!

I'm glad you know them. I'll point my dh in the direction of this thread when he gets in. Best wishes to you and your little one

Many thanks to you Cadbury!

Hi there patjoseb, Cadbury pointed me your way. I am a but rusty, but I can remember enough.

The first thing to say is that Factor VIII levels can vary quite widely, even with severe haemophilia, and secondly, the level does not always indicate whether you are going to have a bleed. I know a bloke who played rugby with a Factor VIII level of 0! Not recommended, but hardly ever had a bleed .

Truth is, your doctor is right, it is a wait and see game. If he is not having severe problems now, that is a good sign, but when he starts rough and tumbling, as boys do, you'll know if it is going to be a problem. I am sure I don't need to tell you that even if he is severe, current treatment is extrmely good, and if you have a good haemophilia centre the outlook is pretty good these days.

Yes, my haemophillia centre is great. My son is already getting in with my two older boys, play fighting as boys do, and he still hasn't had any problems, so fingers crossed! Thanks for the advice!

My 17 months old son has servere Haemophila B and recently went to ur love centre for the typical check up. And the young consultant also told me that his last blood test reading came out at 3%. As you'll know this will take him from severe to moderate. However, the senior nurse also advised us that this is fairly common, a blood could have been taken not long after treatment. Hence this would raise his levels.

Like you I raised my hopes but now come to. The conclusion that the level of serverity will always remain the same.

Good luck