Strep symptoms after IVIG?

[pamsboy]

Hi All, my son has had 4 IVIG treatments for a positive Anne Connolly, and we think he has pandas/pitands as well, but has only gotten 600-700mg/kg each time. The last two times he has had an increase in OCD symptoms including compulsions, verbal tics, repetitions, echolalia, mood lability for about 10 days to 2 weeks after the IVIG. He actually has never had positive strep titers but doesnt mount a good antibody response anyway according to his immunologist.

 

Question is: why would IVIG cause a worsening of pandas/strep symptoms instead of helping? Is this typical?

 

thanks

Pam

[peglem]

Hi All, my son has had 4 IVIG treatments for a positive Anne Connolly, and we think he has pandas/pitands as well, but has only gotten 600-700mg/kg each time. The last two times he has had an increase in OCD symptoms including compulsions, verbal tics, repetitions, echolalia, mood lability for about 10 days to 2 weeks after the IVIG. He actually has never had positive strep titers but doesnt mount a good antibody response anyway according to his immunologist.

 

Question is: why would IVIG cause a worsening of pandas/strep symptoms instead of helping? Is this typical?

 

thanks

Pam

I don't know what an Anne Connolly is, but IVIG at lower doses is proinflammatory, so that could cause PANDAS symptoms. Higher dose IVIG is anti-inflammatory. My daughter had 2 low dose IVIGs (lower than yours) and had a huge flair of PANDAS symptoms after the second one. She subsequently has been getting monthly 1.5g/kg dose, and responds much better to those- shedding symptoms, instead of increasing.

Edited August 4, 2010 by peglem

[nevergiveup]

Wow, please let us know what a pos Anne Connolly is. My dd receives ivig also at the exact same dosage. She says she sees symptom relief for about 10 to 14 days after ivig. She has had 8 ivig's at this dose. The majority of the time the ivigs produce symptom remission for about 9 days but we did not see this untill after 3 monthly ivig's. I know Shaes mom didn't see complete symptom resolution until 6 months. If your child is having a strong immune response to ivig, fever, headache etc. This may stimulate the immune system to produce antibodies. Slow down the infusion to reduce the overall immune stimulation impact. Second, this dose is way too low to dramatically reduce autoantibodies u may need a much higher dose of ivig to see a difference. He needs to maintain a weekly level of at least 1700 igg's to redirect the bad antibodies. At this dose he probably has a level of 1300 by the second week. My dd is now being monitored to ensure she receives a dose to treat autoimmune disease. We have switched to every 21 days and will up her dose until she maintains a .minimum of 1700 iggs at the third week. Have ur doc measure trough levels to ensure the levels stay high. We are optimistic that increasing frequency and dosage will give her relief the full three weeks between infusions. However if she gets sick or strep, she could still have some set backs but hopefully the next ivig will reduce symptoms. My immune doc says 28 days is wrong, the half life for ivig is 21 days.

[pamsboy]

Anne Connolly is a pediatric neurologist at Washington Univ. St Louis and it detects autoantibodies to the brain. Common in autism and LKS. So how did your daughter's autoimmune disease get diagnosed? My son actually tolerates the infusion well because we do it really slowly. We never did the two day infusion of total 1.5gm/kg so are planning on doing that. Has everyone done it that way?