My 11 year old dd has been treated for the last year with high-dose augmentin, predinsone, low-dose naltrexone, clonazepam, NAC, GABA, and Omega Via (it took 6 years to get the right diagnosis, but that's a different story, and one many of you know from experience). She was holding steady on that regimen until June, but we've been in a devastating downward spiral since then. She has a wonderful psychiatrist who is incredibly knowledgeable about PANDAS, and he thinks (we do too) that it's time to try IVIG. We can't go any higher on the antibiotics or the prednisone.
She starts sixth grade in just a few weeks, and at the moment, I don't think she's going to make it. (We've missed a year of school for PANDAS in the past, and unfortunately, her current symptoms are as bad or worse than they were that year). We would like to start IVIG as soon as possible, with the hope that it works quickly, but also knowing it may take time, or not work at all.
I'm hoping some of you with experience might be able to help us with these questions?
We have an appointment with Latimer, but it's 2 months away. Has anyone done IVIG with her, and if so, how long did you have to wait after your initial appointment?
We were also referred to H. Chugani at Nemours Children's Hospital, who we thought might see us sooner, but when I called to set up an appointment, the person who answered the call said he left Nemours last month, and she wouldn't give me any information about where he is. I haven't been able to find him by internet search either. Does anyone know how to reach him or if he's still practicing? It seems a bit odd to disappear into thin air after being Chair of Neurology. Hopefully everything is ok...
We're on the east coast. Any other docs you can recommend for IVIG?
Many thanks in advance!
