IVIG Progress

[momto2pandas]

Re. for how long "monthly" kids will need IVIG, the plan for our kids (ages 4 and 6 - were 3 and 6 when IVIG started) is to go for a year and then see how they do off of it. HOWEVER, apparently there is a test they can do now (memory B cells, I think), kind of experimental but our immunologist says that it's a good predictor of prognosis - whether kids will need continued IVIG long term or whether they're likely to become independent of it. He did it on my boys but I don't have the results yet.

[Joan Pandas Mom]

Elizebeth, Thanks, I just reread your post from the other day. My son did have +IGG and negative IGM for mycoplasma. He has been on Clarithromycin on and off for about 3 months now (augmentin in betweeen). I think you are right with that causing a lot of problems too. My pedi tried to tell me otherwise. Pedi tried to tell me IGG shows previous infection, which we all know. I have to have him retested for lyme because we did the Igenex 7 weeks post ivig and I have been reading here it needs to be at least 12 weeks post ivig.

[LNN]

Elizebeth, Thanks, I just reread your post from the other day. My son did have +IGG and negative IGM for mycoplasma. He has been on Clarithromycin on and off for about 3 months now (augmentin in betweeen). I think you are right with that causing a lot of problems too. My pedi tried to tell me otherwise. Pedi tried to tell me IGG shows previous infection, which we all know. I have to have him retested for lyme because we did the Igenex 7 weeks post ivig and I have been reading here it needs to be at least 12 weeks post ivig.

 

Igenex told me we only had to wait 4 weeks post-ivig when I called. But you may want to call them directly to confirm. We are almost 9 weeks post-ivig and doing the test today (hopefully). Call them and ask about your own specifics. That way you'll know for sure without necessarily spending the money for a re-test.

[KeithandElizabeth]

I know that many of these doctors are considering the mycoplasma IGG positive only as a negative mycoplasma, but there are several articles describing how a repeated or chroni mycoplasma infection may not create a rise in the IGM levels.

 

Our LLMD strongly feels that mycoplasma can mimic lyme disease on its own and that it should be treated aggressively with two antibiotics at once for up to 4 months. He is currently treating another PANDAS child for mycoplasma and staph with azithromycin and bactrim.

 

What were your son's IGENEX results as the 7 week mark?

 

I would also test for the lyme coinfections.

 

Elizabeth