3 years since onset of severe OCD- could it be PANS?

[ginaanddon]

It has been just over 3 years since the onset of my then 8 year old daughter's severe OCD.

She did have an illness maybe a month prior to onset that involved a sore throat- fever and such- never tested for strep.

 

She is 11 now- and was doing well with therapy- after first changing diet and adding supplaments. But then this past winter had a severe flare up of OCD- to the point that she is home bound- fearful of anything touched by anyone else.

She has been on prozac for almost 4 months- very slow increase in dose to now 15 mg She is petitie at about 70 lbs.

 

She is calmer- but still having a very difficult time getting her to return to working on exposures like she had done prior to severe onset-

 

I have wondered about PANS or PANDAs for some time, but was discouraged from doctors for pursuing it further but over the past few months, it has really bothered me- that it could be that-

 

But can we seek diagnosis this far from the onset?

I have not been able to find that answer to my question or where to begin with testing.

I am so glad I found this forum.

Thank you

[beeskneesmommy]

Yes, you can seek dx this far from onset. I suggest that you make an appt. w/a specialist ASAP. She needs testing - the easiest to start with is a blood test for Strep titres (ASO, AntiDNase), Mycoplasma Pneumoniae, and some docs suggest the virus Coxsackie. Along with this a western blot for Lyme can be done. although this test has a high false negative rate. You can pursue specialized testing for Lyme, Bartonella, Babesia and other tick borne infection as well. I would start with the simplest, however that I first listed. What part of the country are you in? Dr. Bouboulis, in CT, is a specialist (Immunologist) that will do more in depth testing. However, if you have a friendly family physician, the Strep/Myco and western blot are easy to order. Here is a link of other specialists:

 

http://pandasnetwork.org/resources/providers/provider-list/

 

Hope that helps and hang in there! -Kath

[peglem]

Agree w/ Beesknees, but would also do a rapid strep test and or culture.

[T_Anna]

My DS15 probably had PANDAS for many years before we discovered what it was, one of his triggers is Coxsackie which he had at age one....we only had him tested this past November.

 

We are also in a severe exacerbation and homebound. Depending where you live both Quest and LabCorp have home blood draws.

 

T.Anna

[rowingmom]

You are in the right place.

 

Most of us have come to the decision that mainstream treatment was not working for our children, taken the leap, and found help with specialists that treat "outside the box". Unless you are extremely lucky, you will not find a mainstream doctor that accepts the treatment methods used by specialists mentioned on this forum. Please don't waste time trying to change minds. You need to help your child. Find a specialist in your area (let us know where you live and someone will chime in) and as mentioned above, test for viral and bacterial infection (including lyme and the co-infections) with ILADS accepted tests and with a doctor that interprets the results properly.

[Missmom]

You can try ibeuprofin at full dose for her age and weight for a week or so to see if you notice any improvements in behaviors. This should reduce inflammation in her brain and is just another small clue if you are on the right track. Ideally you would also try a month or two of antibiotics such as augmentin or Zithromax along with the ibeuprofin. If you have a good relationship with a physician I would explain the situation and see if they are willing to explore this with you. Until I found the right doctor willing to work with my son it was very worrisome and frusterating. There is nothing wrong with changing doctors until you find one that you feel will work with you. Good luck.

[pr40]

Just to repeat, if you put dd on abx (augmentin and zytromax), in a few months you will see if they make a difference. if they do, you'll know you are on the right track.

In addition to what other posts suggest, check for food sensitivities. This is not ONE cause game, the entire immune system is affected and there is a range of things that are out of whack.

I cannot say to anyone welcome to this site but finding this site was the moment of the beginning of the improvement for our kids.

[powerofprayer]

http://www.ocfoundation.org/PANDAS/

This is a great article that someone here shared with me.. I printed a copy for our provider and she read over it and was willing to give my dd 6 weeks of Zith. The article also guided her in ordering certain blood tests.

Good Luck!

[Iowadawn]

I apologize I haven't read through the entire thread--I just want to say to RUN, don't walk to PANDAS doc. This stuff can start looking chronic and then it is a booger. There doesn't get to be a pattern of real exacerbations. More like bad/ really bad/ less bad. Get thoroughly checked over. Best Wishes. Dawn

[tpotter]

You can try ibeuprofin at full dose for her age and weight for a week or so to see if you notice any improvements in behaviors. This should reduce inflammation in her brain and is just another small clue if you are on the right track. Ideally you would also try a month or two of antibiotics such as augmentin or Zithromax along with the ibeuprofin. If you have a good relationship with a physician I would explain the situation and see if they are willing to explore this with you. Until I found the right doctor willing to work with my son it was very worrisome and frusterating. There is nothing wrong with changing doctors until you find one that you feel will work with you. Good luck.

If you do ibuprofin, make sure the stomach is protected with food.

[tpotter]

Just to repeat, if you put dd on abx (augmentin and zytromax), in a few months you will see if they make a difference. if they do, you'll know you are on the right track.

In addition to what other posts suggest, check for food sensitivities. This is not ONE cause game, the entire immune system is affected and there is a range of things that are out of whack.

I cannot say to anyone welcome to this site but finding this site was the moment of the beginning of the improvement for our kids.

DS now 20's symptoms improved within hours, actually, so you might get lucky and have that happen. That's how I knew for sure that what we were dealing with was not bipolar and possibly even the asperger's.

[Mayzoo]

Strep titers are a great first lab, but if they are negative, that does not mean you are not dealing with PANS. My daughter was a classic presentation with an active strep infection at the time of dx; however, her strep titers have always been super low. However, she responds beautifully to abx treatment, and regresses badly when a taper down is attempted. This simply means another antibody is the main trigger for this particular group of kids; hence, the PANS dx. Further digging has revealed my kiddo is, as her immunologist states, a very "complicated case." Naturally, nothing with her medical has ever been typical .

[3boysmom]

If you get a perscription for antibiotics, then don't forget to give probiotics to protect from a yeast issue. Remember this is an immune issue and these kids have flare ups from yeast overgrowth from antibiotics. You can search the topic on probiotics to learn more (they can be purchased over the counter) Prayers for healing...Linda

[cobbiemommy]

Another test that you might request is a streptozyme titer. Ds, never tested positive for ASO or antiDnase, but did test positive on Streptozyme titer. He had strep inside the tissues of his nose, so he never would have cultured positively. This is a common test paid for by insurance, but Dr. B was the only one who ever ordered it. I think he literally saved my child's life.

[Missmom]

Cobbie,

 

Just curious how did he treat the nasal strep. Did you have to use some sort of nasal spray, or did regular abx get it all. I have always suspected strep in my sons nasal passage, but never had that specifically tested. He also tested positive on streptozyme but not too bad on ASO and anti DNase. Thanks.