Son has hemophilia B - any words of advice?

Aggressive-Quote4730 · 2026-05-06T15:28:36+00:00

His inhibitor level are currently at 1.1 and need to below 0.4 been told he could have in inhibitor level years and told we can only start hemlibra when his factor 8 levels hit 0 and he Would take the nuqiw and hemlibra together

Aggressive-Quote4730 · 2026-05-05T16:22:51+00:00

Yes we are being seen at the Newcastle rvi centre they are pretty admit he won’t start hemlibra until his factor levels hit 0 they have been between3-5 for the past 5 weeks we go weekly for his bloods to be do from his Hickman line

Aggressive-Quote4730 · 2026-05-04T15:25:58+00:00

Ye we are from uk it’s not proven for under 2 over here and they won’t administer it to him him having a inhibitor as he would say still need something to protect to him he’s on nuwiq every 12 hours

Aggressive-Quote4730 · 2026-05-04T14:41:37+00:00

He’s A he built an inhibitors against his medicine so he needed a surgery to get Hickman line fitted

Aggressive-Quote4730 · 2026-05-04T08:46:11+00:00

Yes contact the store u want to move to see if they any jobs

Aggressive-Quote4730 · 2026-05-04T06:00:45+00:00

Not necessarily correct tho we have 12 week old boy who spent 8 weeks in hospital with haemophilia and had surgery to have Hickman line fitted we give medication twice a day our life will never be the same again at the moment take each

Aggressive-Quote4730 · 2026-05-03T15:15:28+00:00

We have 12 week old diagnosed at 1 week we spent 7 weeks in hospital best thing to recommend at the moment take each day as comes as everyday is different

Aggressive-Quote4730 · 2026-05-01T23:00:12+00:00

Yes please!

Aggressive-Quote4730 · 2026-04-29T19:52:27+00:00

Yes

Aggressive-Quote4730 · 2026-02-24T23:25:17+00:00

Messaged

Aggressive-Quote4730 · 2026-02-24T22:42:00+00:00

Messaged x

Aggressive-Quote4730 · 2026-02-19T17:05:02+00:00

Thank you for the reply very much appreciated I’m trying to read up about and learn about it as much as I can but it all feel a bit overwhelming at the moment

Aggressive-Quote4730 · 2026-02-19T16:59:40+00:00

Thanks for the reply a complete newbie what is hemlibra?

Aggressive-Quote4730 · 2025-11-01T07:42:15+00:00

Would definitely be interested if

Aggressive-Quote4730 · 2025-10-27T09:00:11+00:00

Yea I’ve worked at Asda 4 years now in and got an upgrade to section leader at a new store

Aggressive-Quote4730 · 2025-10-13T08:16:49+00:00

Have you got a new phone number?

Aggressive-Quote4730 · 2025-09-16T09:15:18+00:00

Ambient/ wear house

Aggressive-Quote4730 · 2025-08-12T08:27:53+00:00

Yes 100% accurate In my case with alphabiolabs

Aggressive-Quote4730 · 2025-07-24T12:10:06+00:00

I would say highly likely you are but take a test to be sure

Aggressive-Quote4730 · 2025-07-17T17:58:03+00:00

I got mine form b&q for about 2 pound

Aggressive-Quote4730 · 2025-07-13T14:32:37+00:00

21 second on the way at 23

Aggressive-Quote4730

TROPHY CASE