Hello All, I haven't posted in awhile, but we are still dealing with PANDAS, and I need treatment advice. Brief history: DD 11 has been dealing with PANDAS for a number of years. She has low igg levels (CVID), tested positive for lyme in addition to PANDAS. We saw Dr. L, she said because of low immune levels immunologist would be a better fit. We currently see Dr. B. Daughter did a series of 7 hd ivig every 8 weeks for a year. We stopped for 10 months since she was doing well. Last February she got sick, and fought it off. This was definitely different than how she would respond in the past. In the past, she would get really sick and end up in the hospital with asthma type issues. We thought we were clear, but a few weeks after she started with the PANDAS flare. In retrospect, she probably had micoplasm. She had been on antibiotics the whole time, ended up doing steroid burst, and ultimately started ivig again this fall. This time she has completed 3 HD ivig. Currently she is doing well. Lyme is not an issue any longer (nor co-infections). I have a phone consult scheduled this week, and want to have my ducks in a row.
IVIG has been very good for her. She had not gained a single pound since stopping ivig, and the first month she gained 5 pounds. I do think IVIG gives her body the chance to heal and not constantly fight infections. She does not have tic's, and her rages and rigid inflexibility are better. The OCD is definitely better. Hoarding better, we have been able to clean her room, she will eat food (and lots of it!). The telltale sign of urinary frequency is gone. Is she 100%, no, but I am not sure how much of inflexibility is her strong will and/or habit. I don't want to stop ivig if it is too soon, but I don't want to continue out of fear. She has seemed to plateau.
So my questions: Some do only one HD ivig and say healing can happen for up to a year. Others, like us in the past have done a series of several. Is there any evidence either way? Is it just by Doctor? What is the NIH study doing?
I am not anti-ivig, I realize for us IVIG is also beneficial for her low IGG levels. She is definitely low (low 400's) with a normal low range being a minimum of 550-600 for her age. She is definitely getting stronger, she has not had a hospitalization in several years, and has not needed a nebulizer treatment in a year. It is invasive and a difficult trip for our whole family to go to Connecticut, so I don't want to just stay the course without having a plan. I want to make sure that I do what is best for her, whether it is the easiest or not. She is not at 100%, but this might be where therapy could help with habits that have become ingrained. Currently we home school so her germ exposure is limited.
Thanks for any insight into this difficult illness.