How fast do OCD and other PANS symptoms have to come on to be consider

[BethM]

My son is 8 and had a little OCD and separation anxiety prior to a severe onset that came this past July. My question is how fast does the OCD or anxiety need to start to be considered PANS or Pandas? He had a soar throat on June 18 th did not show on rapid strep test so was not given any meds. Two things happened in July: we started him on Zoloft to take the edge off to do ERP therapy (I only wish his OCD was back to the level it was in May when we started ERP) At first it seemed that the Zoloft was helping his anxiety a little but at the same time his OCD got soooo much worse, he became very uninhibited, hyperactive(felt like he was ADHD on steroids). Wouldn't listen, unfocused... So after 4 weeks the doctor stopped the Zoloft. His hyperness went down a little but he has never been the same since then. He has extreme separation anxiety especially with school starting. He crys everyday and fights to not go to school cause his OCD and anxiety is so high. We have to give him Ativan to get him to school. Then at home he is defiant does inappropriate things ( again ADHD like). School work always came easy now it's a struggle cause OCD gets in the way and he has trouble focussing. Last week we had the strep Titers blood tests done but didn't show anything overly high. I feel like he had all the symptoms of pandas but can't verify the strep part and not sure how fast the OCD needs to come on to be considered "fast onset" Should I go to a pediatric neurologist? Our new psychiatrist just started him on Abilify for OCD and augmentin. He said lets try the antibiotic to see what happens cause his symptoms look so much like pandas. Anyone know of a pediatric neurologist in the Los Angeles, california area that has experience with pandas? We are exhausted and my poor son so wants to feel normal again! Any help is appreciated.

Thanks,

Beth

[norcalmom]

Beth,

That's a very good question. And somewhat open to interpretation.

There's a blood test available from Moleculera labs- that, along with meeting with a doctor that's a pandas expert- there are only a few of those, whike there are more and more docs that help treat- your case is more complicated without the "sudden onset" is see an expert.

 

And check out Moleculera Labs- new lab run by one of the premier pandas researchers.

 

Best if luck, and post of you need help finding a good pandas expert in your area.

[LNN]

If you look at Swedo's papers and the literature on the NIMH site - the criteria is sudden onset OR significant abrupt rise in OCD symptoms. You do not need to be OCD-free to fit the criteria. It means you don't have the typical wax/wane pattern but rather an abrupt spike as a result of an infectious trigger. PITANDS and PANS do not require that trigger to be strep.

 

But it's great that your psych is willing to do a trial of antibiotics - if possible, get a 30 day script. 10 days is often not enough. Also, if you can stand it, hold off on the abilify for those 30 days. If you start both at the same time, neither you nor your doc will know which is responsible for any improvements.

 

At the top of this forum, you'll see some pinned discussions and one of them is Yale's PANDAS questionnaire http://www.latitudes.org/forums/index.php?showtopic=18905 which might help you sort things out in your head.

 

The sudden-onset criteria is tricky. Some parents can tell you the exact hour. Others see things creep in over weeks or sometimes it could be months before they have an AHA moment and realize something's really changed.

[MomWithOCDSon]

The "classic" presentation is "overnight," i.e., very quickly. As noted by Dr. Susan Swedo, the lead research on PANDAS with the NIMH, however, the temporal relationship between infection/exposure and appearance of behaviors tends to change with the number of infections/exposures, and the maturation/development of the kid may play into how quickly behavioral changes become noticeable since, especially as they age, they tend to try and hide some of their fears and anxieties. So, bottom line, it varies.

 

Many of us (myself included) look back now and realize we actually "missed" that first, "overnight" exacerbation because our children were too young, didn't have the verbal skills to express their discomfort and/or fears. Additionally, in our case, my son was classically asymptomatic for strep (no sore throat, no fever), so we knew he'd been exposed, but we didn't know he'd "caught" anything. In the end the exacerbation event that sent him over the edge and put us . . . finally . . . on the PANDAS path came some 8 or 9 years AFTER what was likely his first PANDAS episode.

 

Now, Dr. Swedo has adjusted the PANDAS criteria to provide for a significant increase in certain behaviors (OCD, anxiety, tics, etc.) over a "short" period of time, rather than just an "overnight" onset of these behaviors.

 

So, long way of saying, I wouldn't get too hung up on an "overnight" display of symptoms, especially in a child your son's age, since this is likely not his first PANDAS episode, though it may be the first that's been properly identified. I'm glad your doc has done a script for abx, and I'll be interested to hear how your DS responds. Is he only taking the Abilify in addition, or is he still taking the Zoloft, also? Dr. Tanya Murphy has authored a paper on SSRIs and PANDAS kids, the upshot of which is that, for whatever reason, PANDAS kids can be very sensitive to SSRIs and, many times, an exceptionally low dose is helpful while a "standard" dose is too much and actually activates (increases the OCD/anxiety) rather than quells it. That might be something to put into the "hopper" as you move forward along this trail. I encourage you to go through some of the pinned, explanatory threads at the top of this forum since there are a number of resources, research papers, etc. there that may be helpful to your family and perhaps your doctor, too.

 

As for a pediatric neurologist, I would only go to one who is, in fact, not only aware of PANDAS but accepts it as a viable diagnosis; unfortunately, there remain way too many naysayers out there who can waste your time and money, and leave you in the lurch, as well. Among the pinned threads on this forum is one which identifies "Doctors who have helped us," and you might find the name of a local neurologist there. You can also check PANDASNetwork.org for sources, and/or Google "PANDAS Doctors," and you'll find a link authored by Beth Maloney (author of "Saving Sammy," a biography of her son's PANDAS journey) with a state-organized list of PANDAS-savvy practitioners.

 

There is a world of information here on the forum, and perhaps some other California families will pipe in and have a doctor lead to share. Take care, and welcome to the forum!

Edited September 13, 2013 by MomWithOCDSon

[nicklemama]

Dr K says it starts earlier than most people are aware. The real first episodes can be more mild in nature and dismissed as a phase, especially in young children. That is when the strep is involved. He believes strep is always the initial trigger and sets the child up for the 'big one' that gets parents attention and so, its called sudden onset. The big one may or may not involve strep. That is where you start having a hard time getting the ave doctor to recognize it, although this is changing as more knowledge is gained.

 

You do not need positive strep titers for a diagnosis. Many other infections are now known to cause PANS ,which is what it's called when other infections are involved and PANDAS when strep is involved.

 

My son has never had a positive strep culture nor ever had high titers to strep. He has the diagnosis PANS, which his major episode occurred after a flumist vaccination. He got better but not completely then had another exacerbation before diagnosis, after an ear infection. It took a year to diagnose him properly and get treatment. He had another exacerbation after having pneumonia last year. He's had flares off and on throughout the four years.

 

All this to say, it's not only strep and its likely your child has had PANDAS longer than you are aware of. That OCD/anxiety he had previously was probably PANDAS.

[JoyBop]

My sons story is almost identical to yours, so much so, that it gives me the chills. Only we have had positive strep tests that have made it easier to confirm.

 

My son had mild obsessive thoughts and anxiety since 2010. It was there but it didn't ruin anything for him and he managed just fine. Then after Christmas time he had 5 says of fevers with no sore throat or any symptoms. We finally took him to the dr and he tested positive. He was treated with 5 days of Zith and we thought that was that. Then 5 days later pandas struck and he had the exact same symptoms you mention with the ADHD, hyperactivity, trouble at school, ect.

 

Looking back we realized that he had his first documented strep in 2010. I am a believer that pandas can start off slowly and get significantly worse with each exacerbation. Looking back I can see it so clearly. But as it was unfolding it was at first, just kid quirkiness. Then it was just strange behavior. Then it was like being hit with a title wave.

 

There are those that do not have documented strep with pandas. There are also those that have PANS from Lyme or mycoplasma. You really need to be looking in those directions.

 

I second the idea to see a pandas specialist, even if you have to travel. But sounds like you have a gem of a doctor treating you now. Just look for other causes, it may not be strep at all.

[qannie47]

ditto....good resources here...

[qannie47]

when did first symptoms appear? That your could remember? Do you remember an onset before july?

[BethM]

Thank you everyone for your responses. I also made a mistake on his meds. He is on Anafranil for his OCD. (I wrote Abilify for some reason) Also the doctor has him on a 14 day course of antibiotics. Is that long enough? I read the post that said I should try to get the Dr. to write it for 30 days but I don't think he will do that.

 

 

 

 

 

[peglem]

Thank you everyone for your responses. I also made a mistake on his meds. He is on Anafranil for his OCD. (I wrote Abilify for some reason) Also the doctor has him on a 14 day course of antibiotics. Is that long enough? I read the post that said I should try to get the Dr. to write it for 30 days but I don't think he will do that.

He probably will give you more abx if you report some improvement while on and deterioration while off. But, if you could get the 30 days straight, that would be even better.

[pr40]

if you think that this is an auto-immune disease, you may want to treat it as such. One abx may not be enough, usually we give combos. 30 days also seems short. do comprehensive blood test vitamins and mineral, all inflammatory markers, and Cunningham's, lyme, mycoplasma. Soar throat could also be coxackie.

 

in addition to sudden onset, one way to determine the likelihood of PANDAS is a genetic history of parents' families. if there is auto-immune diseases, PANDAS is more likely.

and if it is PANDAS, you may want to do other things in addition to abx like change diet (usually gluten and dairy free), and take care of methylation and continue therapy.

[MomWithOCDSon]

Thank you everyone for your responses. I also made a mistake on his meds. He is on Anafranil for his OCD. (I wrote Abilify for some reason) Also the doctor has him on a 14 day course of antibiotics. Is that long enough? I read the post that said I should try to get the Dr. to write it for 30 days but I don't think he will do that.

Unfortunately, I would bet that 14 days of abx will not be sufficient; few of us have had lasting success with such a short abx course, especially for kids of your son's age. If your local doctor is unwilling to immediately renew or extend the prescription, then it will really be important for you to get to a doctor who is more experienced in treating PANDAS.

 

Just as a side note . . . I'm not sure how long your son has been taking the Anafranil, but I'm sure you'll keep a watchful eye on how he responds to that med. Mine was prescribed that briefly, and we did not have a good result as he became increasingly anxious while he took it.

[qannie47]

Swedo recommends 6 weeks of abx to rid of symptoms...in first episode with my ds it did indeed take 5 wks to clear infection/symptoms

[LNN]

Your doctor probably won't be swayed when you say "a bunch of moms on the internet told me you need to prescribe more antibiotics."

So show him/her this article from the International OCD Foundation which supports a 6 week trial of augmentin and then perhaps a different class of abx such as azithromycin (page 5) http://www.ocfoundation.org/uploadedFiles/MainContent/About_OCD/Expert_Opinions/IOCDF%20Expert%20Opinion%20-%20PANDAS%281%29.pdf

 

Also see page 6 of the same article which supports what MomWithOCDSon writes about PANDAS kids needing to start with much lower doses of an SSRI than most kids.

 

Finally, show your doc this paper by Pandas researcher Tanya Murphy which shows some antibiotics have both an immune-modulating effect as well as psychotropic effects " Psychotropic effects of antimicrobials and immune modulation by psychotropics: implications for neuroimmune disorders." http://www.ncbi.nlm.nih.gov/pubmed/23148142

 

This may make the doctor feel more on solid ground, with a little professional support from respected authorities.

[JoyBop]

The bottom line is, you need to find a doctor that knows how to deal with PANDAS. There may be a bit of a wait to get in once you find one, so best to start looking. My kids did get some improvement after about 10 days of abx but 14 will not do the trick, in my opinion.

 

My son also takes meds for anxiety and OCD and he can not be without them, so every child is different. He was suicidal on Prozac but responds very well to Zoloft. It takes the edge off of his incessant chewing on his hands and toes and makes his life just a bit easier.