Any one know about immunoglobulin replacement?

[summerdreams]

Ive posted many questions about my 15 month old with ongoing problems with immune deficiency and neutropenia today they've brought immunoglobulin infusions to get us through winter but have said they were vague and said ill get a call next week to see what the other team think. If anyones been through similar or anyone know the process could you tell me anything about what happends? Thankyou

[summerdreams]

Brought up*

[BlackSwan]

My husband had hypogammaglobulinemia growing up and had these infusions every month for years and years. For the past decade or so he has been fine without them. I don't know much about it other than the fact that he was very young when he started. He's fit and healthy now, for what it's worth!

[BlackSwan]

And good luck with your LO. I would imagine it could only help your child, why not...

[summerdreams]

Thank you so much for your reply they say they are 90% sure he has hypogammaglobulinemia but worried it could be cvid due to the neutropenia. It makes me feel better that your husband is ok now as his future is a worry at the moment as he cannot mix with people he is constantly unwell so your post about your Dh could have made me happier

[summerdreams]

Do you know if your husband remembers the infusions ? How did he find them he might not remember but I'd love to know did he live a normal life Inbetween ? Sorry for all the questions but never met anyone in a similar situation.

[BlackSwan]

The husband here.... I was treated from the age of 3 or 4 following a spate of ear infections. For the first 10 years it was intramuscular injections and subsequently intravenous infusions. In between, life was absolutely normal. The only differences were I would get preemptive antibiotics for any sore throats, and no live vaccines so no travel to East Africa. For me the condition was specifically just the IGg deficiency, so I can't be sure how much is relevant to your child. However, I understand it is common treatment to help those with compromised immune systems (for whatever reason) to help them lead a normal life and stay well. So keep pressing the immunologists for answers, but be confident that the IGg ought to help your child be well.

[summerdreams]

Thankyou so much it really is nice to talk to someone who came out the other side. We've had 9 ear infections, tonsillitis x3, brochilitus, Uti and numerous unidentified viral infections. We've been on prophylactic antibiotics since September with no resolve so it's looking like infusions my son has had no live vaccines as problems were discovered after his rota virus vaccine landed him in hospital. Ironically at the minute I'm cleaning up vomit and panicking he has rota virus thank you so much it's much appreciated that you took the time out to reply all the best

[BlackSwan]

I've got the computer back from my husband now. That's a lot of infections for you both to deal with. But on the upside, you have a diagnosis - which can be a huge battle with anything uncommon. Good luck and here's hoping you're about to turn a corner on this. Certainly in my husband's case it has not held him back at all. x

[2old2beamum]

Hi my DD is 10 and has hypogammaglobulinaemia. She is treated with 2 weekly subcutaneous infusions for the last 4 years. She has Emmanuel Syndrome.
The infusions are not difficult to administer and I do it at home and despite her learning disabilities she copes well.
Please feel free to pm me.
Good luck X