ptcgirl

Thx for all the replies. Last year when we beat Lyme and the co-infections she was on augmentin, rifampin, tindamax and enula. This time dr j has her on azithromycin and bactrim. I wonder why the change. Today I didnt give her any abx. I just want her to have a breather. She seems better to me today. She tries very hard to hide it so that I won't worry. I hate this for my child and all of your children too. I want her to be able to live without this awful disorder that is robbing her of the last years of childhood. I'm so depressed today just thinking about it. The ups and downs are so hard to deal with. Hope comes with the good times and I am grateful for them but they make the low points even harder. I just want it to go away and leave us alone. If you are a praying person, please pray for my child and all of the others hurting. I'm doing the same.

My almost 13 yr old daughter finished her third Ivig almost a month ago and things are not going well this time around. We are so confused. She did amazingly well after the first two but at 8 weeks would relapse due to illnesses. She previously had Lyme, Babesia, bartonella, and mycoplasma but was cleared. However her most recent blood test showed Igg positive for bartonella and the bartonella rash came back. We started treating it with azithromax and bactrim in addition to augmentin for pandas. OCD is ramped up and night times are difficult for her. She is working so hard and this stinks. What do we do? Her drs are dr b and dr j for Lyme. Both in ct. So confused about what we are doing. I hate this.

IVIG is a very easy treatment and I would suggest trying not to be overwhelmed by it. The immune deficiency diagnosis (got that one too) will actually be helpful to you with the insurance company. We've seen so much improvement with IVIGs. My daughter looks forward to having them. It really is a pretty painless and easy treatment. I don't know how old your child is, but IVIG isn't something to be scared about. It is one of the biggest blessings we've found. : )

Hi! I'm also in the Atlanta area. At least you've found some PANDAS friendly doctors (to a certain degree that is). We are traveling to CT to see Dr. B. He is fantastic and it is WORTH the travel, expense, etc. Allergies are a HUGE component of my DD PANDAS issues. Spring and Fall are the absolute worse times for her due to this. In the past, her allergies would cause continual infection and it was a never ending cycle. She is getting so much better now with the help of Dr. B. she takes Singulair and Veramyst, in addition to Augmentin daily. Makes a huge difference (but still contracted Step and Mycoplasma while on it!). She is now on her third IVIG. IVIG has been the key to resetting her immune system. Also, since you live in Atlanta, there is an EXCELLENT CBT/ERP psychologist here. She helped (and continues to help) my daughter SO much. PM me for more info. There are others in Georgia with PANDAS. You are not alone.