IVIG - progress - How long after

[nitshel]

Hello

We had IVIG done for our DS 10 in mid-October. We are not seeing any difference in his tics - they still exist. He is better when he is well rested and they get bad when he is tired or excited. Overall, there does not seem to have been much of a change. We are coming up to 3 months. He had 2 mg IVIG.

 

How long after IVIG did you see any difference in your child? We are wondering if we should start thinking about PEX and tonsilitis.

 

Thank you,

[dasu]

From reading the IVIG papers published last year the gains came around 4 months to a year+ as the immune system retrains itself. We saw a little improvement about 3 weeks in and then great improvement after three+ months. BUT...every child is different and there is other noise you likely have to account for (for us a coxsackie infection.) My daughter had a second IVIG though after a relapse which has shown little effect, 8k down the drain...

[nitshel]

Thanks dasu - does that mean 4 months to see even the faintest glimmer of progress? Three months in we have really no sign of any change - we really want to get him off the SSRIs that we had to use to tamp down on his latest flare that has continued unabated for months now....really we cant afford to wait for months more for something that might not occur

 

I know several people on this forum have tried IVIG and it has not worked for them - how long after the infusion does one say "OK, time to try something else"?

[dasu]

From reading this forum I have read reports of it working anywhere from immediately to months afterwards. There are also cases (powpow?) where it made kids worse, I think that was Lyme.

 

As far as timeframe, Dr L made the decision to do PEX about 4 months. after.