PANS Recovery

[hopeful]

I too have a child who suffered/suffers from PANS. My son's (PP) onset of symptoms came after he had pneumonia. It was over Christmas vacation in 2012. PP had had pneumonia his whole life. Once a year, sometimes twice. This was the sickest he had gotten though. I remember noticing symptoms like a "lightswitch" had been turned on. He took doxycycline for the pneumonia, vomited and immediately after that happened he would ask up to 100 times per hour "am I going to be sick?" Then he started showering up to 20 times per day, not eating because he was afraid he was going to be sick and there were so many other OCD symptoms that came out of nowhere. The anxiety and panic attacks were also triggered with severe depression and he would have them every minute of every day, yelling and screaming he was going to die. We went to dr's, they hospitalized him for 5 days and we returned to the ER the next day. I had no idea what had happened to my son. In the ER they locked him in the psychiatric "Yellow Pod" (I didnt leave his side ) and they wanted to teansfer him to a Psychiatric hospital. I refused, took him home, sought out help at a local mental health provider and began treatment for mental health for him. PP had NEVER shown signs of anxiety, depression, panic disorder. I didnt know what to do, but knew I had to help my son. PP was given several antidepressants that made him worse, it took weeks to figure it out, he wanted to die on them, so we switched to old school Prozac and Risperdone (antipsychotic to control anger). No physicians office in NH believed in PANS so no antibiotic treatment was ever given. PP responded quickly to meds. The highest dose he ever had was 10mg of Prozac and .5mg of Risperdone. PP did miss January to June his Freshman year. It has been about 1 1/2 years on meds, we bought a camper and reintroduced PP to socializing with other kids (which is the only thing he still struggles with) and he returned to school the following year as a sophmore, in a high school with 1900 kids, got his license, got a job and is functioning well except socially with kids his own age. I still see signs of agitation occasionally which I attribute to a typical teenager but PP is doing well. There is hope for PANS, I felt like I lost my son but have regained a new perspective on life and a new appreciation for those who struggle with neuropsychiatric symptoms. It is a horrible disease and thankfully, I have been told with the rapid onset of PPs condition, he will recover. I hope this helps someone who is going through this difficult time. It is going to be tough going for a while but hang in there.

[EAMom]

I'm glad he is doing better. Was he checked for immune deficiency (given that he gets pneumonia so often). I also wonder about an underlying tick borne disease (eg Lyme or a co-infection), or other chronic infections (strep, or viruses)? Also, Lyme tends to "come out" around puberty due to hormonal changes and the North East is a real hot spot for Lyme.

 

I am just concerned that symptomatic treatment (psych drugs) will give you temporary gains, until the next insult to his immune system. Be careful.

 

A resources your doctors might find useful if your son does relapse:
https://www.pandasppn.org/

You can also post and ask about doctors. I know there are several PANDAS/PANS friendly experts in the your part of the country (although maybe not in your state).

Edited October 25, 2014 by eamom

[Mayzoo]

Also, should you be faced with a relapse (here is hoping he does not) you may consider herbal antibiotics. Our daughter is doing very well on those after titrating down off traditional abx. A good read is Buhner's Herbal Antibiotics book.