Wilma Jenks Posted April 18, 2011 Report Share Posted April 18, 2011 He confirms what Scott Smith told us. He said a severe case of PANDAS. He is going to try another abx. called ramiflex or somehting like that. Don't have the name in front of me. He gave us a Rx for the steroid burst, but we are hesitant becuase she gets so wild with so much. He is getting us ready for IVIG. Checking on insurance. He was kind and informative. He wants us to check for co-infections on the Ingenix test. I wonder why Dr. Beals did not have us do this. He is the Lyme expert. Just wondering...My gut tells me the IVIG is the way to go. This poor child has been so sick for soooo long. Link to comment Share on other sites More sharing options...
rockytop Posted April 18, 2011 Report Share Posted April 18, 2011 wilma, I am so glad today's appt was a step in the right direction. Your girl reminds me of one of mine, and I will tell you- steroids did help her ALOT. For while atleast (months!) Sounds like you are heading in the right direction now. What a relief. Been thinking about your appt today and so glad to hear about it. Any time frame on IVIG? Link to comment Share on other sites More sharing options...
SarahJane Posted April 18, 2011 Report Share Posted April 18, 2011 So glad you have a direction! That's good for you & your daughter. Have thought of you today. Link to comment Share on other sites More sharing options...
peglem Posted April 18, 2011 Report Share Posted April 18, 2011 He is going to try another abx. called ramiflex or somehting like that Maybe rifampin? Praying that your baby is finally going to get some healing. Link to comment Share on other sites More sharing options...
Wilma Jenks Posted April 18, 2011 Author Report Share Posted April 18, 2011 I so appreciate your concern and kind words. It truly is comforting. I will keep you guys posted. I pray she gets some relief too. She is such an angel locked inside such torment. Stinks! Link to comment Share on other sites More sharing options...
kimballot Posted April 18, 2011 Report Share Posted April 18, 2011 Wilma - you have done amazing things and seen excellent practitioners to help your daughter. I hope this treatment brings your daughter (and you) some relief and improvement in function! Link to comment Share on other sites More sharing options...
butterflymom Posted April 19, 2011 Report Share Posted April 19, 2011 (edited) = Edited October 9, 2015 by tampicc Link to comment Share on other sites More sharing options...
Wilma Jenks Posted April 19, 2011 Author Report Share Posted April 19, 2011 I am so unsure of what to try. Everything seems to effect her in an opposite way, but I just have to keep trying since her life is non-existent. We are non-functioning family. She is sooooo soooo sick. I have 2 give her a chance, dontcha think. I am so afraid of causing her more harm. I am so numb over this. Link to comment Share on other sites More sharing options...
butterflymom Posted April 19, 2011 Report Share Posted April 19, 2011 (edited) = Edited October 9, 2015 by tampicc Link to comment Share on other sites More sharing options...
trggirl Posted April 19, 2011 Report Share Posted April 19, 2011 Praying for your daughter Wilma. Link to comment Share on other sites More sharing options...
texasmom Posted April 19, 2011 Report Share Posted April 19, 2011 Hi All, I am new to the Forum. I have seen Dr B and my daughter has been treated with IVIG, Steroid, long term ABX use, for co-infections related to Lyme, Lyme....she has had the Cunningham test...you name it..all of it. We see no improvement. This is not a stab at Dr B or any Dr for that matter, it's just how it is. From what I understand, many Doctors DON'T test for coinfections because if you are being treated properly for Lyme it will catch the coinfections. Good luck with all of this. It's a long, frustrataing journey. Link to comment Share on other sites More sharing options...
Wilma Jenks Posted April 21, 2011 Author Report Share Posted April 21, 2011 Did it make ur child worse, or do nothing at all? Link to comment Share on other sites More sharing options...
Stephanie2 Posted April 21, 2011 Report Share Posted April 21, 2011 Good luck, Wilma!! Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now