Course of PANS/PANDAS?

[kc35]

If a child has PANS/PANDAS do the symptoms just keep getting worse until treatment by abx is initiated? Is that how you really know it is PANDAS/PANS and not Tourettes/OCD?

 

I am still trying to figure out what is going on with my DD. Her OCD type symptoms are getting worse. She has to go up and down the stairs multiple times to get the feeling right. She has to touch things a certain way and freaks out if she doesn't get it right. She did not have these symptoms 2 weeks ago. These feelings have intensified since she finished her 5 day course of az last week. While on az her tics were better and OCD type symptoms were mild prior to her abx trial.

 

I tried calling Dr T. He will do a phone consult for $450. Does anyone have experience with him? I called Dr. M in Fl but they have to decide whether you can be a patient there based on case history. Once I get the strep, lyme test results I will send it to them and see what they think. But I think you can't get in until April. I called Dr. B but they have a waiting list and no appt for 6 months. Does Dr. L do phone consults?

[MomWithOCDSon]

Who prescribed the 5-day abx trial for your DD? Can you secure a longer-term prescription from that physician while you wait for an opening with one of the specialists you've mentioned?

 

I'm not certain, but I don't believe Dr. L. does phone consults.

[msimon3]

Regarding PANS vs Tourette vs OCD: it is a broad question and difficult to answer. Generally, PANS tries to describe how and why the body experiences certain symptoms after pediatric infection (PANDAS=Strep, PANS=many pathogens) whereas Tourette and OCD are names for conditions as described by specific symptoms and behaviors. It other words, very strictly speaking, it could be one or the other, or all of the above. For example, if you get Strep then have neuropsychiatric problems as a child, then you may have PANDAS/PANS. Are those neuropsychiatric symptoms compulsions or obsessions? Then you may have OCD as well. Are those neuropsychiatric symptoms motor or vocal tics that last for more than a year? Then you may have Tourette Syndrome as well.

 

It will be very worth your time and money to work with a doctor who is willing and able to explore the "why" and "how" and "when" with your DD and help narrow your focus. Our experience with Dr T was very positive as he tended to look fairly at possible causes, an approach we didn't always get with some doctors.