Iowadawn Posted January 7, 2011 Report Share Posted January 7, 2011 Just an update. For those interested in our situation, our ds 11+ is having hd IVIG this Sat & Sun in Des Moines. This will be a third time after two others that provided some relief-- for about 8 weeks-- and then a spiral. After the second spiral he was dx'ed with the 3 B's in addition to the PANDAS. We are not having to go to Chicago--we scratched & clawed with the insurance for about 4 months and now they say he is approved for a year. We know this hasn't always worked with some on the forum--having the approval gives the lyme doc the flexibility to back off if need be. We didn't even ask for monthly for a year. They probably got so tired of hearing from us that they want to get rid of us for a while!! I believe Evan is probably the first PANDAS patient in Iowa to have IVIG done for this purpose. Monthly dose is to be at .75g/kg. We do not know what to expect--but really no different than the last sooooo many years. We'll keep you posted. EVan is NOT tickled at all, but like the idea of getting it done in a peds unit where he will see other kids. Dawn Link to comment Share on other sites More sharing options...
Phasmid Posted January 7, 2011 Report Share Posted January 7, 2011 Congrats!!! Best wishes to you guys- Link to comment Share on other sites More sharing options...
sf_mom Posted January 7, 2011 Report Share Posted January 7, 2011 Congratulations!!!!!!! Looking forward to hearing reports of further and complete improvement. Link to comment Share on other sites More sharing options...
kimballot Posted January 7, 2011 Report Share Posted January 7, 2011 Just an update. For those interested in our situation, our ds 11+ is having hd IVIG this Sat & Sun in Des Moines. This will be a third time after two others that provided some relief-- for about 8 weeks-- and then a spiral. After the second spiral he was dx'ed with the 3 B's in addition to the PANDAS. We are not having to go to Chicago--we scratched & clawed with the insurance for about 4 months and now they say he is approved for a year. We know this hasn't always worked with some on the forum--having the approval gives the lyme doc the flexibility to back off if need be. We didn't even ask for monthly for a year. They probably got so tired of hearing from us that they want to get rid of us for a while!! I believe Evan is probably the first PANDAS patient in Iowa to have IVIG done for this purpose. Monthly dose is to be at .75g/kg. We do not know what to expect--but really no different than the last sooooo many years. We'll keep you posted. EVan is NOT tickled at all, but like the idea of getting it done in a peds unit where he will see other kids. Dawn Great! Hope it all goes well! Link to comment Share on other sites More sharing options...
mom love Posted January 7, 2011 Report Share Posted January 7, 2011 Iowa Dawn Who is ordering the ivig through your local hospital and how did that process work for you if you don't mind sharing? Link to comment Share on other sites More sharing options...
Iowadawn Posted January 7, 2011 Author Report Share Posted January 7, 2011 (edited) Mom love- We made the decision not to return to Chicago after finding a llmd in central Iowa. He & Dr.K both said that ivig tx for PANDAS & lyme would be beneficial. Once I found out that the infusion center at a large hospital would take a script for IVIG from a doctor not on their staff, we began the process of getting pre-authed. The Lyme doc is the doc ordering. He sent multiple appeals and we fought through the benefits dept/BCBS rep for my husband's employer. We just kept squeaking. The infusion center there doesn't do children, so they have them go to the pediatric dept of the hospital as outpatients to have the infusion. It took a few months, but that was how we did it. It isn't the first time he has ordered IVIG, but it was the first for him at this hospital. He didn't think they would do it. Wasn't an issue. Do you live in central Iowa. I can PM you if you want. Dawn Do you need actual names when you ask "Who is ordering"? Edited January 7, 2011 by Iowadawn Link to comment Share on other sites More sharing options...
philamom Posted January 7, 2011 Report Share Posted January 7, 2011 Dawn- Congrats!! Please keep us posted! Melinda Link to comment Share on other sites More sharing options...
Fixit Posted January 7, 2011 Report Share Posted January 7, 2011 Dawn..if you can refresh my memeory.... you child has lymes also???? what are the 3 bs are you dealing with 2 children.... since doing ivigss...has there been any long term improvemtnt...30%? you're doing ivig and abx to treat lymes??? i am just starting the lyme thing Link to comment Share on other sites More sharing options...
hawks Posted January 7, 2011 Report Share Posted January 7, 2011 Iowa Dawn - I think I PM'ed you but not sure. Also from Iowa here. Our son 14 year old is in the process of being diagnoised with possible PANDAS - we are currently doing the steroid burst through Dr. K. Because of all the things we see about co-infections we are wondering about lyme as well. Wanted your opinion about what to do, docs you have seen a such. A brief description of our son's condition is under the topic my husband posted yesterday under the Topic of Many PANDAS treatment questions. Sorry I am not well versed at using this forum yet. Thanks much. I wish you well in evan and your family's recovery - our family's prayers are with you. Link to comment Share on other sites More sharing options...
JAG10 Posted January 7, 2011 Report Share Posted January 7, 2011 Dawn, You are such a "can-do" mom! A trailblazer who makes it easier for those who will try to use those paths. Best wishes and pray complete health is achieved shortly! Jill Link to comment Share on other sites More sharing options...
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