SSS Posted February 28, 2011 Report Share Posted February 28, 2011 Coram Lab being the chain of infusion centers located across the US. Our is 20 minutes from our house. This is all just my opinion. This would never work unless you have a PANDAS/IVIG literate Dr. who knows how to prescribe your IVIG- I started with a well-known DAN! Dr. 6 months ago after hitting rock bottom trying to figure/help my dd5 out- he treats PANDAS patients, has administered IVIG's, but does not have his own infusion center. He clinically dx'd us with PANDAS, we've tried 3 different antibiotics (holding on Azith.) have done a steroid burst, CamK 175. However, my dd5 is in chronic stage- untreated for years. We decided to go IVIG. I consulted w/ another PANDAS expert, to 'double check', get advice- this Dr.'s infusion center would have been a 5 day travel total- my dd5 is very fragile, never been on a plane, 2 other children here to try and find care while gone, etc. Would it have been my first choice to have it done under a PANDAS Dr. directly, first IVIG? Yes. But: So our DAN!/PANDAS Dr. wrote the prescription for Corham Lab. Spoke on the phone to them at least 3 times- I spoke on the phone to them 4-5 times before going today- We are cash pay. Kaiser insurance (HMO) = tightly closed door for PANDAS. My dd5 is not immune deficent. Cost: 2 day HD-IVIG- Gammeux, dextrose, we are doing close to 2.00 dose- dd5 weights 40 pounds- 19 grams each day, plus small amount IV steroid, benedryl, hydration solution before and after, RN nursing fee's, and toy goody bag: $5,000. I double checked them on everything while there, more than once. They had it all correct. Personal note: I'm full of anxiety (okay, maybe a wreck inside) Pray this all does okay afterward/side effects. My daughter did okay-- they had DVD player, excellent RN service, she has kept the IV in her arm wrapped for tonight, so no re-insertion for tomorrow. Just tought I'd share. Link to comment Share on other sites More sharing options...
JAG10 Posted February 28, 2011 Report Share Posted February 28, 2011 Fantastic! Sounds like you were as cautious as sanely possible. Prayers to all the Saints for little Samantha!!! Link to comment Share on other sites More sharing options...
Malke Posted February 28, 2011 Report Share Posted February 28, 2011 Oh Sarah, it sounds like it all went as well as it possibly could have gone. You are an amazing mom and you made all of that happen with your perseverence, personal energy and rock-solid commitment to your amazing kid. Great work! xxoo Malke Link to comment Share on other sites More sharing options...
butterflymom Posted February 28, 2011 Report Share Posted February 28, 2011 (edited) = Edited February 3, 2016 by tampicc Link to comment Share on other sites More sharing options...
SarahJane Posted March 1, 2011 Report Share Posted March 1, 2011 Whew. Glad to hear that the procedure has gone well. Good luck and my thoughts are with you and your dd. Link to comment Share on other sites More sharing options...
trggirl Posted March 1, 2011 Report Share Posted March 1, 2011 My prayers are with you. Link to comment Share on other sites More sharing options...
Wilma Jenks Posted March 1, 2011 Report Share Posted March 1, 2011 Thank God. Praying for you guys!!! Link to comment Share on other sites More sharing options...
butterflymom Posted March 1, 2011 Report Share Posted March 1, 2011 (edited) = Edited February 3, 2016 by butterflymom Link to comment Share on other sites More sharing options...
SSS Posted March 1, 2011 Author Report Share Posted March 1, 2011 Thank you :-) Coram did us right. We have been home now for a few hours, we are done, and it went just fine--- I thought we were going to have another episode when we were leaving: suddenly, she didn't want to leave, started walking the lines in the parking lot, didn't want her feet to touch the car floor, started kicking my seat in front of her hard, a few names were called---then it passed (whew) So now we wait and see...keeping the ibuprofen flowing to try and stave off any after-effects for the next few days. Thanks again, everyone-- all your posts from the past and current have helped me and my little girl tremendously-- God bless-- Link to comment Share on other sites More sharing options...
Doug Posted March 1, 2011 Report Share Posted March 1, 2011 (edited) Thank you :-) Coram did us right. We have been home now for a few hours, we are done, and it went just fine--- I thought we were going to have another episode when we were leaving: suddenly, she didn't want to leave, started walking the lines in the parking lot, didn't want her feet to touch the car floor, started kicking my seat in front of her hard, a few names were called---then it passed (whew) So now we wait and see...keeping the ibuprofen flowing to try and stave off any after-effects for the next few days. Thanks again, everyone-- all your posts from the past and current have helped me and my little girl tremendously-- God bless-- Did they give you a rx for a steroid for the headache and the nausea? keep the water or gatorade flowing this will help with the haedache for the week. we have had IVIG with Dr K twice and that is what we did. we also have a Coram center in Denver that we were thinking about trying but we just went back to Chicago but I do know PANDAS parents in Denver that might find that IVIG might work for them in Denver. Keep us posted.. Tracie Edited March 1, 2011 by Doug Link to comment Share on other sites More sharing options...
SSS Posted March 1, 2011 Author Report Share Posted March 1, 2011 "Did they give you a rx for a steroid for the headache and the nausea? keep the water or gatorade flowing this will help with the haedache for the week. we have had IVIG with Dr K twice and that is what we did. we also have a Coram center in Denver that we were thinking about trying but we just went back to Chicago but I do know PANDAS parents in Denver that might find that IVIG might work for them in Denver. Keep us posted.. Tracie" Thank you Tracie- Our prescribing DAN!/PANDAS Doctor ordered our IVIG to include a small bit of Solu-Medrol (steroid) in the IV each day before we started (followed by Benedryl, then hydration, then IVIG, then hydration again.) I hope this helps stave off after-effects. I don't have a script for steroid after in case- he says to just keep the ibuprofen flowing, and keep her drinking... All and all, Coram was successful for us as far as procedure and administration, and only 20 minutes away! But man, are me and hubby wiped out. It was very stressful for us (of course, right?) Link to comment Share on other sites More sharing options...
butterflymom Posted March 2, 2011 Report Share Posted March 2, 2011 (edited) = Edited February 3, 2016 by butterflymom Link to comment Share on other sites More sharing options...
Mary M Posted March 2, 2011 Report Share Posted March 2, 2011 Sounds like you did all the right prep and that Coram provided the proper treatment and care. You should feel great about what you have accomplished. We have a family here in Michigan who used Coram last June. For those stock afficionados, Coram may be a good buy if they start courting PANDAS families (of course, those of us PANDAS families can't buy stock...we're buying immune globulin and abx but...). My dd refused to leave Oakbrook (Dr K's infusion site) last June. If misery love company...our two kiddos shared a common IVIg thread. With hope for health, Mary from Michigan Link to comment Share on other sites More sharing options...
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