ERP therapy can be very, very hard, especially with morbid intrusive thoughts.

I just want you to know there is another way. It's called Cognitive Therapy (ERP is more of a behavioral therapy) and explained in the book
"Cognitive therapy for obsessive-compulsive disorder a guide for professionals"

13:25 here. As it's been 13 months and your child is older, I'd say what to do next depends on how the OCD is interfering with your child's functioningand how much it bothers him. If it is affecting school work (perhaps because of loss of sleep), his abilities to have sleepovers, or really bothers him in other ways, I'd get it addressed. Ifit isn't really bothering him or stays at the same low level, I think you could wait it out. Be prepared, however, if a large stress comes along it might re-emerge stronger than before.

At this point, exposure and response prevention therapy might be a good step, and as the OCD is pretty mild, it may not take many sessions to address the issue. One of the major problems with ERP is finding a competent provider with availability. If you are on the fence, I would still go ahead and make an appointment with an ERP provider. It will take a while to get in, and you can always cancel.

I'd also do the same with Dr. Latimer. The waiting list is pretty long and if, when the time comes, it doesn't seem pressing, you can cancel.

9:55 here. Thanks so much for the exhaustive reply. We are already past one year (13 months) and the lingering symptoms often don't manifest at all. But they do sometimes at night and cause difficulty falling asleep. I just don't know whether this is traditional OCD that has manifested because of adolescence or PANDAS in terms of where we go from here. Specialized therapy and possibly Prozac or Latimer and antibiotics or give it more time on its own. Child is 13.5 yo.

PP here. Forgot to mention that viral infections can also set off PANDAS (one of the reasons they renamed it PANS). This is a lot trickier to diagnose because you won't have a strep titer or positive swab to point to. You definitely need to be in the hands of a specialist in this case--some pediatricians recognize the strep/PANDAS nexus, but would be less likely to feel comfortable in the virus/PANS realm. To be short in my previous account, I glossed over that my child's first outbreak actually came after chicken pox. Everything after, though, was classic strep/PANDAS.

Anonymous wrote:Np here, if titers are not elevated,not PANS, right?

My child had sudden onset OCD symptoms. I asked for a strep test, it was positive. Dr. gave 10 day course of antibiotics. Wouldn't give more. Tested months later with different doctor and levels not elevated. Some symptoms remain though not at level of initial onset.

Complicated question. But some kids do not show the elevated titers many do based on what I've seen on discussion boards. I am pretty sure Dr. Swedo, the PANDAS guru who is at NIH, agrees that you do not need elevated titers. What you need is a history of strep very close to sudden outbreak of OCD. The history could come through a swab or through titers. Looks like your DS met this through the swab. He might have met it through titers at the time, but you don't have this information.

What you are seeing is lingering OCD that should tail off. It can take a year or more after a first outbreak to be completely resolved, although often in a first outbreak it is shorter. I'd say with my child the first two outbreaks had symptoms that took five to six months to go away. But the symptoms were not overwhelming--quite manageable--and I put it down to kids sometimes do quirky things (both outbreaks occurred before publication of Swedo's seminal paper). We did not know it was PANDAS so just had the usual 10 day course of abx for strep.

On the third outbreak, however, the world crashed. I kissed my child goodbye in the morning and came home to an alien. Again the usual ten days of abx. It took nearly a year and a half for the symptoms to subside. The fourth outbreak was similarly awful, and it took two and half years, including a year and a half of ERP to bring my child back to baseline.

You could be very lucky, and this could be a one time occurrence because your DS is fortunate enough to not get strep. I have read that a very high percentage of people (like over 90%) become more or less immune to strep throat by age 14 or so. (Just tried to verify on internet, though, and couldn't find in the minute or two I allotted.) We thought this was the case with our child, who went blessedly free of strep/PANDAS through high school, only to have it strike twice in college.

But your DS could get PANDAS again if he gets strep. What you need to know is that each outbreak is worse and persists longer than the previous one. This was certainly true for my child, but is also the clinically recognized course. It is very important if this happens again that your DS get the abx treatment very promptly. NIH recommends at least one month to six weeks of abx for a PANDAS outbreak. (Many of the PANDAS specialists will do longer, however.) If that does the trick, great. If not you have to go on to more aggressive measures. What I can't say enough is that early, prompt, and adequate treatment is the way to go here. You do NOT want this to become a chronic condition. My child was diagnosed at the NIH but rejected for their study because he was too chronic.

I would suggest you see Dr. Latimer even if things are manageable now. This would position you to address any new outbreak as quickly and as aggressively as needed. If your DS never has another outbreak, you have lost little but the cost of the visit. But if he does, you will be prepared and could save yourself a world of hurt down the road.

Np here, if titers are not elevated,not PANS, right?

My child had sudden onset OCD symptoms. I asked for a strep test, it was positive. Dr. gave 10 day course of antibiotics. Wouldn't give more. Tested months later with different doctor and levels not elevated. Some symptoms remain though not at level of initial onset.

OP--Definitely would not go in the direction of schizophrenia at this point. It's not just rare in children, it's extremely rare.

With OCD children know the intrusive thoughts are a bit or a lot off--like if I don't count backwards from 100 my mother will die. They just aren't able to keep them from intruding though they know the thoughts are baseless. As PP said, schizophrenics think the thoughts are real and so don't get the distress OCDers do.

My DS has taken augmentin XR and azithromycin for PANDAS. The usual 10 day abx course typically will not work for PANDAS--you need a month to six weeks. If there are recurrences, the child may need to be on prophylactic abx. Removal of tonsils also can be helpful.

My DS always had positive throat swabs. His titers also were very high. But as PP said, many pediatricians will dismiss the possibility of PANDAS based on the result of one quick strep test. You need to probe deeper.

Definitely second seeing Dr. Latimer.

Intrusive thoughts from OCD come from within the mind of the person. They also cause great distress to the person having them, which can lead to compulsions to try to control them. (Often these are mental, not physical). Intrusive thoughts in schizophrenia feel as if they are being said by someone else (from outside the person's mind) and are not usually as distressing because they are seen as real and not something to be pushed away.

We went through something similar to what you're describing and after multiple visits to the pediatrician and psychiatrist, we finally saw a neurologist (Dr. Beth Latimer) who diagnosed our son with PANDAS. The diagnosis was life changing and we now have our child back. My son has close to zero anxiety and OCD symptoms now. I cannot imagine what life would have been like for him (or us) had we not gotten a proper diagnosis and treatment. And no, Amoxicillin would not necessarily have wiped out the strep. Also, other illnesses besides strep can call PANS and PANDA-like symptoms. If the OCD came on suddenly out of nowhere, I highly encourage you to see a PANDAS expert. Dr. Latimer is the best in the area. FWIW, I brought up the possibility of PANDAS to our pediatrician and he dismissed it and said since son was negative for strep, it couldn't be PANDAS. Good luck!

I don't know about schizophrenia, but it sounds more like OCD. My dd has PANDAS and was on antibiotics over and over, we would see a huge decrease in her symptoms during and after abx, but then she'd get strep again. It got to the point where I could tell she had strep just by her behavior, then a couple days later she would have a sore throat and I'd take her in and she'd have a positive throat culture. But many PANDAS kids do not have positive throat cultures.

My dd had a huge improvement with 10 mg Lexapro
And antibiotics when sick. She got her tonsils out and is about 90% better.

OP here. Even though schizophrenia is rare in children, how is the diagnosis made distinguishing it from OCD with intrusive morbid thoughts? I was just reading that ASD is often a preliminary diagnosis before schizophrenia, and given his diagnosis of Aspergers and premature puberty, I am pretty terrified that in fact it may be schizophrenia emerging.

For parents with kids suspected to have PANDAS, what antibiotic did the Dr's end up prescribing? Wouldn't the Amoxicillin prescribed a couple months ago have wiped out the strep?