michelleb

Can anyone tell me if Sheppard Pratt or any other psych hospital is PANDAS or PANS friendly? We are at the end of our rope. Have been to both Children's in DC and Shady Grove in the past from desperation because our boy is sometimes so violent and suicidal there is no other option. They do not recognize PANS and tell him it is fake. He is obsessed with killing himself and has now turned his anger on us because we are stopping him. We are in treatment - scheduling Plasmapheresis but not sure we will make it that far. No medications have worked so far. it is like antipsychotics have no effect on his at all. I need a back up option in case I have no choice. somewhere where he can be safe and still continue PANS treatment with Dr. L or anyone else.

thanks all - just thought I would give an update. Our doc did prescribe Risperidone. It hasn't helped much. Also gave us Valium - no effect. Had his tonsils out a couple of weeks ago - was calm for a week. Maybe the Oxycodone, pain that distracted him? Don't know. As he stopped taking the Oxy - his suicidal pleading and rages have returned. He is tkaing Ibuporfin now that it is cleared post surgery. We'll see if that helps.

I just heard maybe at Stanford? Dr. Frankovich Sargent.

We are finally scheduled for IVIG but I heard at Rhode Island Conf that in the case of my son who is extremely depressed adn suicidal and who has not responded to antibiotics so far, that it would be better to go straight to Plasmaperisis. Hoping Dr. L will consider this. We are all on our last leg - my son in particular. Did you have to go through any particaulr steps before getting plasmapherisis scheduled?

My son got worse - or at least not better, on Augentin, and steroids sent him completely over the edge - not only did he get much much worse, he started hallucinating, and the rages intensified, plus - he was strong - three of us couldn't hold him down when he went into a rage - punching hititng biting throwing things. He ended up in the hospital. Now he is off the steroids and we swtiched the Augmentin to Azithromycin. Blood tests so far have not shown much - all in normal range except for high Mycoplasma titers, but no current infection. We are working with Dr. L who has recomended getting his tonsils out (which happens this week) and IVIG next week. We are stilll waiting for the million tests Dr T recommended - I called him for help beacuse we were deperate, not sure this was PANS or PANDAS and Dr. L was hard to get a hold of (she like all the doctors who are tring to treat out kids is super busy). The new ABX have not helped either. He is also now on Valium and Respiridone because he is so out of control when he goes into a rage that there is no way for us to keep him or ourselves safe without sedating him somehow and even with that it is rough. He is not as aggresive now but he pleads with us to let him die. He is interested in nothing but dying. He tells us he hates us and has to hurt us because we will not let him die and dying is the only way to end what he is going through. This all came out of nowhere. He was a great kid, straight A student, really easy, very sensitive and lots of allergies, not not suidical or violent in any way. In public - with his firends he can be 100% normal, charming and everything, then he will suddenly turn into a monster. I am so worried about what will happen post tonsilectomy. I am terrified he will be totally out of control when he is in pain and we won't even be able to get him to take the ABX anymore.

Thanks. I will try.

Our 11 year old son was finally diagnosed with PANDAS after a horrible year of depression and suicidal ideation. He does not have classically recognizable tics or OCD (except for being obsessed with committing suicide). He has been to therapists, psychiatrists, ERs, and psychiatric hospitals - none helped. Finally our pediatrician suggested PBDAS. He has been on antibiotics for 10 days and steroids for 7 days now but he seems to just be getting more violent and upset. We are trying to be patient and just wait this out to see if the medicine works but it is so difficult. The night before last we were in the ER because he was hallucinating something terrifying and actually started convulsing. His rages the last week have gotten extremely difficult to handle. It takes two if us to hold him when he becomes intent on hurting himself. Any suggestions on how to get through the next week? What if this doesn't work?