Treatment for PANS and PANDAS

[Rachel]

Have you seen this article?

 

https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223

[bobh]

Yes, it has made the rounds in various groups.  There are some that are disappointed with how this paper gives psych meds a similar status to abx for treatment.  I look at that as possibly the kind of compromise that is typical of such concensus papers, that is done possibly at the expense of the bleeding edge treatments that are pushing the science forward.

What do you think of it?

[Rachel]

Before my son was diagnosed, he had tried many of these psych meds. The meds made him worse. IVIG also made symptoms worse but plasma exchange was his lifesaver. When brain inflammation is present, psych meds should not even be prescribed until the inflammation is under control. What's so sad is that many doctors don't believe that molecular mimicry is real and can cause these types of illnesses.  IVIG and plasma exchange are expensive treatments and should not be ignored when testing indicates the neural receptors are out of range such as measured in the Cunningham Panel. I think it's shameful that our children cannot get the treatment that they need. My son was unable to stand or walk, suffered with severe scalp pain, headache, hoarse voice, brain fog, hypersensitive to touch, and was also diagnosed with Postural Orthostatic Tachycardia Syndrome. Psych meds and high dosages of antibiotics did nothing for his condition. My son dealt with these symptoms for 3 years before his doctor finally was able to get insurance to approve IVIG and finally able go on to plasma exchange.