Ivig treatment, what happens of you stop?

[RainthenSun11]

Our daughter has had 4 rounds of ivig. Her brain swelling (basal ganglia) has practically returned to normal however her behavioural issues indicate scarring to the frontal lobe and loss of executive function. The neurologists have suggested stopping monthly ivig as the inflammation has gone down. I'm scared that she will relapse, her symptoms might worsen? I've heard people have a years worth of ivig? She is improving every so slowly so I don't want to see her go backwards.. anyone have experience with this??

[kitnkaboodle]

As someone who gets IVIg every two weeks indefinitely and it is very helpful in treating my acquired/autoimmune hyperekplexia from brainstem encephalitis, I would say ASK FOR MORE.

[EncephInternational Partner]

Hi, I am sorry to hear about your daughter. If you haven't already, please do get in touch with us at Encephalitis International. There may be some avenues of support you find helpful [phone] [e-mail]

[Heathercb]

Hi My daughter was in Southampton Hospital in UK for 3 months and had 3 or 4 rounds of IVIG over that period. After an MRI showed inflammation had gone the IVIG was stopped. She had her 18th birthday in hospital and is now 20 and more or less completely recovered. A few very slight personality changes but no further treatment was required. Good luck to you both