For the adults with PANDAS /PANS....

[Eatmoregreens]

How did you get diagnosed?....how did you get your doctor to listen and take you seriously (especially since it is labelled "pediatric")?

What made you think you had PANDAS / PANS vs. something else - e.g. did your child have it?

When I asked my doctor to swab me for strep and I briefly told her why, she said in all the years she has practiced medicine she has never heard of strep presenting this way.  I'll give her credit in that she actually did end up doing the swab but if it comes back negative I am pretty sure she won't run the blood tests.

 

Edited March 9, 2018 by eatmoregreens

[bobh]

Sorry that I can't answer your questions, as none in my family are adults with PANS.

But ... what was the result from the swab?

[Eatmoregreens]

Hi bobh,

My swab came back negative.  I did not ask for blood tests, but if I end up going to a Functional MD (which I am considering), I will ask them to run the bloodwork.

Thanks for asking!

[bobh]

Ok.  Here are some things I have learned about swabs:

- it is easy to not have it well done, and get a false negative, such that if you do it 3 times and get 2 negatives and 1 positive, you need to believe the positive (false negative rate is higher than the false positive rate)

- you can have it in your gut, and not at all in your throat

- besides swabbing the "other end", some experienced parents have swabbed their kid's boogers, and found it there, even though it's not (detectable) in the throat

- you can buy your own swab kit, and do it at home, as many times as you want

Finally, some PANDAS/PANS kids also don't register a high ASOT titre (that's the blood test for recent exposure to strep) or have a sore throat, even though they have strep that is causing them a flare.   All this makes it hard to figure stuff out, but anyway this is part of what I have learned.

[Eatmoregreens]

Thanks!  I didn't know you could do your own swabbing!! Do you know where I could look into that?  My doctor only did a throat swab even though I have heard it is better to swab pretty much everywhere.  How long after an illness would results potentially still come back positive?

[bobh]

Sorry that I am so slow to get back.  There are several kits available online.  I had purchased something called Quidel QuickVue (it was what our local doctors used), but some time ago, it wasn't so available.  Someone else that I very much trust on this subject had then purchased a strep swab kit from Innovacon.  She did a few tests on both kits and got the same results, FWIW.

[kos_mom]

My DS in his twenties has PANDAS but it was diagnosed when he was a child.  Adult practitioners of any kind rarely are acquainted with this.  To get titers it is often possible to a script for them at a CVS if you get a sympathetic NP.  There are also on line labs that you can a script from but insurance doesn't pay.  Another option is to go to an online doctor--Doctor on Demand or similar--and have them fax a script.  I think it's a cheaper option than paying for the test yourself.

[BeenThere]

I have been reading posts for a year now, and I have to share my son's story in case anyone would benefit.

My son has Pandas; he is 22 years old.  He was officially diagnosed at 11 years old, but in retrospect we believe he had the initial exacerbation by the age of 6. He had experienced multiple ear infections and bouts of strep such that he was on antibiotics 3-5 times per year since birth.  He was breast-fed, and was not exposed a lot to other kids until pre-school.  At 6 he displayed extreme hygienic OCD and hand-washing, cleaning things, no one could touch his belongings, fear of bird poop, night terrors.  But it was short-lived, about a year, and we had reason to believe it was related to stuff he was learning in school - or perhaps were trying to make sense of it.  His pediatrician said it was a phase. We now think it was Pandas. It was 2001.   Things did pretty much rectify themselves.

In 2006 while on vacation for two weeks we heard my son whispering things,  the same three things over and over. Tourettes? OCD we wondered? In a short time the repetitions became louder and followed every single sentence.  He would look at us wild-eyed as he repeated the words and then started counting and tapping. He could not have a normal conversation so he stopped having any at all.  My husband and I started frantically researching online and stumbled upon Pandas and Dr. Swedo's work at NIMH.  We cut vacation short and raced home to meet with our pediatrician.  She had never heard of Pandas - but agreed to give a throat swab (Negative) and even a three day culture (negative).  We insisted on a blood test for ASO and Dnase-B (both raging positive!)  She called me completely shocked and started him on amoxicillin - but also referred us to a psychiatrist.  The psychiatrist ($450 per hour) just wanted to prescribe psychotic drugs.  We refused, saying we wanted to rule out physiological causes before going down that road.  We found a Cognitive Behavior Therapist who was interested in PANDAS and introduced us to a psychiatrist at a well-known children's hospital who finally clinically diagnosed PANDAS - he was interested in the science of it and wanted to understand the relationship between infection and neuro-psychiatric symptoms. Through use of high-dose long-term Penicillin (and pro-biotics, Omega 369) my son was able to beat PANDAs in about 9- 10 months. 

I remember this time so clearly; it was so scary; Everyday I wondered if my son was gone forever.  It seemed like he was possessed. My husband and I felt so isolated and alone. We felt we were fighting this battle on our own and neither of us is involved in healthcare.  My son missed 1/2 of 7th grade (no great loss) but seemed to come out of it 100% and excelled in 8th grade.    We felt like we had PTSD and insisted on blood tests any time my son had a sore throat.  We asked about tonsillectomy but were advised against it.  We should not have listened.  Those same doctors did not know as much about PANDAS as we did - and they certainly weren't incented to learn.  I honesty felt like I had dodged a bullet - and we thought it was over.  It wasn't.

But for the most part, the next 8-9 years were fine.  Looking back I can now see that there were minor flares along the way, likely caused by bouts with strep or other infections, but we were so aware we had everything immediately checked out so it could not get worse.  My son became a top national athlete and was recruited to a top academic D-1 school.  He excelled athletically and academically. We rarely thought about PANDAS although he was treated for strep both his freshman fall and sophomore fall.  Still we were under the impression that PANDAS was a pediatric illness and did not apply to him anymore. Believe me folks -  It may start that way but there is no reason that a 19, 21, 25 or 30 year old can't get strep or other infections.  My son is living proof. 

In Spring 2016 he developed EBV and strep (he believed) while at college but he tested negative and received no treatment. By June he suddenly developed extreme social anxiety and fear of everything.  This kid was super confident, athletic, intelligent - he was suddenly literally sweating when peers at his summer job joked around with him.  He could not speak in a group - and he loves public speaking.  It was like he went from being on top of the pyramid to being intimidated by everyone.  And then there was apathy and depression - a feeling of hopelessness and despair over something undefined and inexplicable.  We did not recognize this as a PANDAS flare - in 2006 he had displayed overt OCD and tics, verbal and physical.  In 2016 it was 100% emotionally based but just as sudden and debilitating.  It lasted about 3-4 months and was completely untreated as we assumed sophomore year had been hard and there were residual issues. This slowly receded and my son went back to school, fall 2016, but he was different - less confident, more reticent, began avoiding strong-willed or competitive people (whom he had previously preferred). In retrospect it was a PANDAS flare and he got better but not back to his true personality.

Time marched on, something was different but not terrible.  N on else would have said anything was wrong. He had periods of anxiety.  His personality was different- confidence was depleted, suddenly intimidated by his athletic team so dropped out of athletics. Began to recede from conflict and from people. But we and he did not connect it to PANDAS. Then he called from Europe and said he was sure he had strep - spring 2017.  He was sure but he had no fever and the doctors where he was saw no pus in his throat.  They refused to give him a swab or a blood test.  We rushed him to a lab when he returned home 6 weeks later but by then the swab was negative and because it was negative  doctor refused to order a blood test. And he seemed fine by then. One month later, while he was at his summer internship on the East Coast, he called crying.  He could not walk into a room where his peers were.  He could not speak to anyone.  He was panic-stricken and afraid of everything and so terribly depressed he could barely function.  It was completely irrational and my husband looked at me and said "This is Pandas".  I called all over Boston trying to get a blood test the next day and finally talked some doctor into calling in the lab order.  The ASO titers were 950 and D-nase B were 295.  That was the official start of round two. 

The difference now is that pediatricians, under the guise that PANDAS is pediatric in nature will refuse care to anyone over 18.  We have been turned away due to age from the Stanford Clinic where we live and the Boston PANDAS group, where my son goes to college, Dr. C in SF (3 year wait list) and the list goes on.  It has been a year of .

[bobh]

Oh my, your story is so scary, because our son also had his first episode at age 6, and now (at 14) seems to be 85-90% good, with some residual anxiety from time to time.  We do think of the anxiety as a PANS symptom, so for example when he recently became more anxious, we put him back on a supplement that we found had previously helped .

Thank-you for sharing this story - it really is important for us all to be on the lookout for recurrent symptoms when our children are young adults.

[LordChallen]

beenthere, thanks for sharing your story. It already helps me. I think my daughter (11 now) is almost exactly that same situation. At age 4, she was laying down the law on the play ground where older, more rowdy boys were crossing boundaries. Now she cringes in fear every time someone walks past her in school, afraid they will make her sick.

We just got the PANDAS diagnosis a couple of months ago. She started having breakdowns at gymnastics. Just finished 30 days of Zithromax and now she wants to play again, but still obsessed about her temperature and germs. But she first got strepp when we she was probably 5. Things got weird, always anxious. Even around to go out and play.

But, I think things are getting better.

The didn't find it, so to speak.

But, my wife recommend it to the doctors, who did an "ah huh!" moment.

Edited May 15, 2018 by lordchallen

[BeenThere]

My son had to have emergency tonsillectomy during finals week of fall semester (regret immensely not following our instincts  way Back in 2001 and insisting they be removed) and pulled out of his senior spring - missed commencement week and graduation this week.   He sees his parallel life going on without him. 

We are seeing someone now, a PANDAS specialist.  DS is being treated for lyme-related co-infections although he has been asymptomatic for traditional lyme symptoms.  No one was talking about all the co-infections back in 2006.  Now it seems liike most kids have something related to lyme in the mix.  "Rowingmom" on this forum expressed the interesting alternative narrative that maybe it's the lyme that gets in and creates the perfect storm for PANDAS to take hold. That is how we interpreted her experience. Now everything is so inter-related we really don't know what is causing what - is it PANDAS, or lyme or die-off, the many (31) pills a day my strapping 22 year old is chained to, general depression and anxiety over his situation - who wouldn't be depressed and worried?  The specialist who finally accepted our family and is 100% interested and invested in this, does not know.  We are in the situation of hoping the drugs to kill bugs work and we get to IVIG and it works, before my son gives up on his life.  You all know it's a struggle.  When your kid is an adult and reads everything and analyzes it, the struggle to keep moving forward, keep positive, is really intensified.  We were advised to stop his prophylactic  abx in 2007.  We could not get more abx. Today I would insist and keep my kids on abx until at least 25 - maybe all their life.

[BeenThere]

I would also add that my on was tested for lyme 3 times by different doctors, infectious disease, rheumatologist, internal med (but none PANDAS-literate because those people refused to help him) in SF and Boston and all came back negative for Western Blot.  There was never further testing - we felt relieved as it was something we did not have to be concerned with.  But when we found the Pandas specialist here after my son totally crashed, she ordered a plethora of tests through Igenix.  That is when we learned about the bartonella and babesia.  Don't waste your time with LabCorp and Quest.  They really don't have the expertise.  Igenix is cash pay and expensive - but you will get legitimate test results.

[4Nikki]

You could alway pay for the Cunningham panel out of pocket. 

[BeenThere]

Oh we did that last August - it was positive in 3 of the 5.  The doctor who diagnosed him back in 2006 (now retired) was able to order the test, but is not active n the field anymore.  The Moleculera Labs people interpreted the results for us.  The PANDAS diagnosis was/is as strong as they come, that did not matter - he still could not get medical care due to his age.  

I hope we are on the right track now with the PANDAS specialist we have, at least we have been able to get more tests and start treating him but we wasted a year - even though we had the diagnosis - because everyone refused to see him.  Think the people at Stanford and Mass General - where he or we were residents etc.  I think its criminal, really, to refuse care when the diagnosis is made and clear.  Reminds me of refusing care for a gunshot wound in the ER because someone is too .... old,  young, dark, light, etc.   Someone is clearly sick and suffering and you know why - but refuse to help.

[MsMom]

Beenthere, your story gave me chills. I have a 27 year old son who has been in and out of Pandas since elementary school, but the first severe episode was 7th grade. (This is all hindsight, as he was not diagnosed until high school.)  He is now in a very severe flare and has been for a couple of years.  He is begging for help. He saw Dr B in Connecticut several years ago, occasionally sees a very informed allergist/immunologist a few hours away (who gives no meds, just supplements) and now sees a very sympathetic family doctor in our own city (who has him on Azithromycin and Augmentin.)  My son has to go off the antibiotics often, because of all of the diarrhea they cause.  He is desperate, and I don't know what the next steps are.  His sister also had a couple of severe PANDAS episodes, but does quite well now. She also had 3 bouts of what is now believed to be rheumatic fever, in which she was sick for months each time.  She is also in her 20's.  She had an EXTREMELY severe reaction to IVIG several years ago , so we never again did another one, and are hesitant to recommend IVIG to our son for that reason.  He is feeling out of answers.  (By the way, while our daughter had positive strep swabs, our son never did. A couple of the doctors said it is probably in his sinuses or gut. He had sinus infections constantly as a child. Still does.)

We could certainly use some advice and hope.

 

Edited June 25, 2018 by msmom