IVIG - All Mfg. created equal?

[MissionMama]

All knowing hive of warriors....

 

Who knows a thing or two about the various brands/mfgs of IVIG?

 

My PANS son had 2 rounds of HD IVIG back in 2014...this brought him to a better than ever kid and a remission that lasted just over a year until he got sick again and relapsed. These 2 rounds were done via a Children's Hospital, outpatient, in their infusion clinic. About 6 weeks ago we had another HD IVIG. The is was done via inpatient in a pediatric unit just based on our neurologists privileges (first round was managed by an immunologist at the Children's Hospital, our ped neuro is private practice)... Anyway, the brand used this most recent was Flebogamma and the first 2 rounds were done using Gamma something or other....NOW we are switching to a home infusion service (Option Care formerly Walgreens) and I have no idea the brand that will be used. In poking around it seems there are certainly differences and decisions to be made based on a patient's diagnosis. My son's official diagnosis is "auto immune encephalitis - post infection"....

 

Can anyone shed any light here??

 

Thanks so much.

 

Kristi

[cynditk]

Hi Kristi,

 

I would love to talk with you more about your experience with this neurologist, she is just down the street from us! I think we're going to make an apt because it would be good to have someone like this on our team and she sounds amazing...has she done any imaging on your son? Did you need Cunningham panel for her to treat? Is she working with the immunologist to determine protocol? Also interested in your experience with doc at Children's.

 

Our experience has been with Gammunex, which my son has done well with for several years now. We have done hd and low dose both with this product. He has been on Gammaguard and Privigen also, but has done the best overall with Gammunex. My son has both PANS and immune deficiency, and when we did hd he had the same dx your doctor is using. Depending on his weight and how fast they run it the infusion will take 1-2 days, if he's 13 I would think more like 7-8 hours. My son had two 7 hour days when we did hd because he was about 150 lbs.

 

let me know if I can answer anything else for you.

 

Cyndi

[MissionMama]

Cyndi! Check your messages...I PM'd you a few days ago....

Hi Kristi,

 

I would love to talk with you more about your experience with this neurologist, she is just down the street from us! I think we're going to make an apt because it would be good to have someone like this on our team and she sounds amazing...has she done any imaging on your son? Did you need Cunningham panel for her to treat? Is she working with the immunologist to determine protocol? Also interested in your experience with doc at Children's.

 

Our experience has been with Gammunex, which my son has done well with for several years now. We have done hd and low dose both with this product. He has been on Gammaguard and Privigen also, but has done the best overall with Gammunex. My son has both PANS and immune deficiency, and when we did hd he had the same dx your doctor is using. Depending on his weight and how fast they run it the infusion will take 1-2 days, if he's 13 I would think more like 7-8 hours. My son had two 7 hour days when we did hd because he was about 150 lbs.

 

let me know if I can answer anything else for you.

 

Cyndi

[MissionMama]

Yes, to the Cunningham Panel (through the roof with Cam Kinase well over 220). Also D2 at the highest recorded level of 32,000+.

 

Check your messages and PM me for more!