Low IVIG Dose

[Suzan]

Does anyone know of anyone who has been helped by lower doses of IVIG?

 

0.4gm/kg

 

This is what our neurologist wants to start with. I understand this is too low for PANDAS?. He says this is what he always starts with unless a very severe case. Is this just wasting our time? Trying not to stress but I'm not so patient and I won't get to talk to him for a few weeks. Does this just guarantee a second treatment? Does it get us anything? I won't say no to it if that's all I can get.

 

Mom md, can you tell I'm starting to stress?

Susan

[mom md]

I would see Dr. O or call her and say you are ready to go through IVIG at Dr. C's recommendation but have concerns over the dose. Get her opinion. They are both supposed to be working together. She was very adament we do a higher dose despite Dr. C saying we needed .75gm/kg. She seems a little more comfortable with IVIG. I would ask her opinion and then ask her to discuss it with Dr. C. I am sure she would be willing to just order it since you are her patient and Dr. C has recommended it. Please do not stress! The hard part is over. It will get done.

She was willing to do another treatment on Carter and asked me when I wanted it. I told her I wanted to stop and wait since he is doing excellent! She said we can revisit it if it is ever needed again since we know it works. We both left feeling we were on the same page.

Does anyone know of anyone who has been helped by lower doses of IVIG?

 

0.4gm/kg

 

This is what our neurologist wants to start with. I understand this is too low for PANDAS?. He says this is what he always starts with unless a very severe case. Is this just wasting our time? Trying not to stress but I'm not so patient and I won't get to talk to him for a few weeks. Does this just guarantee a second treatment? Does it get us anything? I won't say no to it if that's all I can get.

 

Mom md, can you tell I'm starting to stress?

Susan

[peglem]

My daughter had her 1st infusion today at just over .4g/kg. She is supposed to get this every 3 weeks. I'll keep you posted as to how well it works for us. We don't really have a baseline, so I won't be able to tell % improved- only if there is improvement or not. Has anybody tried low dose for PANDAS? Does it make a difference if there is immune deficiency or not?

 

I'm confused- the immuno said it was coded/billed under immune deficiency, but she was admitted to the outpatient facility under a PANDAS dx. If I don't see improvement, I'll go back to bat with the immuno.

[sf_mom]

Highly recommend higher dose and waiting 8 to 12 weeks to see if another treatment is required. Our son has had three high dose IVIG 8 weeks apart and currently 10 weeks out from last treatment. It is uncertain if the third treatment was required (Dr. K didn't think so) but we opted to do it anyway to keep him protected through the winter months. He is doing very, very well.