Teen: Could it be pandas and other questions?

[mama4]

Hi all, I am new to this board. We are suspecting DC has Pandas or PANS. I would love any input.

 

Here is a brief history: two years of anxiety for DC starting at age 14. After a year of CBT, then extreme anxiety with agoraphobia, started on SSRIs-helped tremendously, but isolated etc.-able to go to school, but just wants to be alone.

 

This past month, sibling came down with strep, the day after DC developed extreme OCD lasted a few days and seemed to dissipate. Dr. requested strep test-all titers were negative!!! Zero. He has had a mystery rash on body for years. Maybe strep? Last week, sibling came down with strep again, DC had had adderrall the day after and then same symptoms, only a little more extreme and angry and very agitated-very scary, again dissipated after a day. (Also an HPV booster vax in there somewhere). Psych agreed we needed pandas expert-we have appt now. Now different sib is showing tics (but again no active strep). DC has Low Vit D.

 

Here are a couple of questions:

 

1) I have read that diagnosis requires sudden onset. DC has this with these two episodes, but I am wondering about the anxiety onset from a few years ago now. Could there be a connection? DC also has ADHD, what were now realize were complex tics (that wax and wane) and Executive Function issues and all kinds of other odd behaviors etc. since DC was 3. We parents and experts have had general feeling DC does not fit any particular diagnosis- a mystery.

 

2)Is it possible the body has been reacting in a certain way for years and the extreme reactions are now just a more severe exacerbation? I think I have read about micro episodes or something like that. Could this explain some of the previous issues? I guess not diagnosable as PANDAS, but similar biological mechanism?DC is a bit old for Dx, but maybe going on for years?

 

3)Everything seems worse at end of year-in Spring. Exposure to viruses/bacteria, maybe connected to low Vit D this time of year?

 

4)DC takes Ativan or Lorazepam to fly. If DC is not in the middle of an exacerbation, has anyone had problems with this med?

 

5)Why are titers for strep negative, but it seems clear to me and psych. that the strep exposure triggered an exacerbation?

 

5)Would love to hear success stories. Anyone go on to not have any more exacerbations once treated?

 

6)Has anyone done formal research or informal surveys of parents on boards like these in regards to medical history/symptoms/connections?

 

 

 

Thank you!!!

[Chemar]

Hello and welcome to the forum

 

I am bumping your first post up so that others may hopefully respond.

[T_Mom]

Hi--First, I am sorry you are going through this--and second, I have not been on this forum for some time now, but just revisiting tonight and saw your post.

 

Bottom line: Read everything on the www.pandasnetwork.org website.

Second, if you have a doc who thinks Ps may be the issue...TRY a month of full strength Augmentin to just see if there is any change...benign enough, I think, and worth a try....make sure it is a 30 day trial though, and forget about the titres, just about everyone agrees it is tough to "catch" them at the right time to see an increase or rise, so forget those as indicators--

 

Good luck.

Edited June 27, 2016 by t_mom

[MomWithOCDSon]

Hi!

 

Sorry about what you're going through, but having officially started the PANDAS journey ourselves relatively late (in terms of age -- DS was 12 at the time), I can certainly relate to your story. Yes, I think it's entirely possible your DS has PANDAS . . . and has had PANDAS for some time, but because he was originally asymptomatic in a classic sense (fever, sore throat, etc.), no one knew. That was what happened with us: repeated exposures to strep and behavioral consequences, but nothing physical/medical. So no one put the pieces together for many years.

 

1. Regarding sudden onset, yes, that's the classic definition. But in cases like ours which have gone undiagnosed for a lengthy period, it can be hard to trace memory back to that first explosion of behaviors, and you may not be able to tie it temporally with any strep or other (viral) illness or exposure, either. But Dr. Susan Swedo (the NIMH original researcher who "discovered" PANDAS and continues to research and advocate for PANDAS has more recently noted that there can be other measures with respect to subsequent exacerbations or events AFTER the initial "sudden" onset event, such as a 7-8 point increase in the Yale-Bocs score (OCD test -- available on-line).

 

2. Yes! There are many, many families, doctors and researchers now who would argue that the "P" for "pediatric" in the PANDAS acronym is a misnomer, that this auto-immune condition can and does apply to adolescents and even adults. And there is also acknowledgement now that while strep may have caused the initial "immune insult" in many cases, once that autoimmune "cascade" has been triggered, other immune events, such as viruses, allergies, etc. can trigger a fresh exacerbation.

 

3. Yes, certainly the re-awakening of microbes as the weather warms up could contribute, as could other environmental factors. Does your DS have any standard environmental allergies (pollen, mold)? If so, that can make things more tenuous in the spring, also.

 

4. Sorry, no experience with this med, but there was another recent thread specific to Ativan; you might try searching the forum by keyword and see what others' experiences have been in that regard.

 

5. As TMom indicated above, catching titers at the precisely right time can be tricky. I agree with the antibiotic 30-day trial.

 

6. Knock on wood, but I consider my DS a success story. It wasn't instantaneous or overnight, and he still uses tools he learned in therapy and other supports (meds and supplements) because he is prone to anxiety/OCD, but he went from an entirely dysfunctional kid at 12 to a very successful, happy college sophomore at 19. It's a long story, but finally getting a PANDAS dx and intervention (in our case, Augmentin XR) was the turning point after several years of off/on anxiety and OCD that spun completely out of control with a strep exposure at age 12.

 

7. Yes, there is TONS of research out now, though this continues to be an emerging field of medicine, and we're still not entirely out of the woods in terms of a contingent of "professionals" who insist on attaching the terms "rare" and "controversial" to a PANDAS diagnosis. In addition to the Pandas Network web site TMom directed you to, I would take a look at the pinned threads at the top of this forum. There you'll find symptom charts, some research papers, etc. Most of us have found it very useful to maintain a journal of sorts with respect to our kids so that we can track temporal relationships between events, behaviors, etc.

 

Glad you have an appointment with an expert! All the best to you!

 

Nancy