Jump to content
ACN Latitudes Forums

Can you completely rule PANDAS out if....


Recommended Posts

If our daughters blood test comes back with no evidence of strep, is the possibility PANDAS as the cause of her sudden onset tics, ocd, fears etc completely ruled out?

 

Thanks!

Nope, not at all. Those blood tests can confirm infections, but not rule out. Can't remember the actual numbers- but a huge percentage of people do not get elevated ASO/antiDnase titers even with confirmed, cultured positive strep infections...and it seems that girls are more frequently prone to not elevating titers.

Link to comment
Share on other sites

No, you do definitely not rule it out!!!!

Has your child had any recent vaccinations? That could be be a cause...

Or could be a viral trigger.

My DD and DS are diagnosed, with no elevated strep titers.

Triggers can be vaccinations, virus, mycoplasma, lyme, lyme co-infections.... They can flare from being around people who are sick.

Link to comment
Share on other sites

No, you shouldn't rule it our w/ titers returning within normal range. However, some doctors will do so. Make sure that you are seeing a PANDAS specialist. He/she will know this but there are plenty of pediatricians and even CDC docs that will r/o d/t normal Strep titers. If this happens, keep digging and move on to another doc.

Link to comment
Share on other sites

My son swabbed positive for strep and labs taken at the same appointment came back with a titer score listed as "too low to calculate." We had done labs a month earlier with no elevated titer and assumed no PANDAS. When we finally got in to the specialist she decided on a throat culture, which was positive. She ran more labs that day that showed nothing unusual at all. When was your DD's last throat culture?

Link to comment
Share on other sites

Just to add the name has been expanded to PANS to include non strep causes, which can also include Lyme & Mycoplasma. Essentially as I understand it these things cause an inflammation which can, for some kids, cause sudden OCD etc.

Edited by Hopeny
Link to comment
Share on other sites

Thanks for all the quick replies.

 

This provides me with a great deal of relief. The pediatrician we are dealing with is very traditional and only prescribed the blood test at our urging. His diagnosis was that it would all "just go away with time" and immediately referred us to a psychiatrist without even actually physically seeing our daughter.

 

We did the blood test tonight and we'll see what the current doc says tomorrow.

 

Her vocal tic has progressed so badly within the course of 5 weeks that she cannot go one sentence without doing it in between and after.

 

Tonight a stack of books fell in her room and she frantically insisted on re-stacking them. This is so out of character for her.

 

Based on what this doc says we'll try to find a PANDAS specialist here in Southern California.

 

Thanks!

Link to comment
Share on other sites

Forgot to add...

 

She had had this "onset" vocal tic thing every single year, once per year for the past 3 years. Usually its a soft hum and it has always been right after she's been sick, though not necessarily when she has "strep". This year however, right after she was sick again (and also the start of 1st grade) she got the same hum but this time it has progressed into a more loud hum/grunt as well as an eye brow raising looking side to side type motor tic. The personality change extremes have come along with it. Rage, OCD, fears, etc. So strange and so sudden.

 

Her last swab for strep was maybe 6 months ago when she was very sick, but it was negative. She has not had any vaccines for at least 6-8 months either.

 

Our gut tells us this is not just a typical stress related tic. Something is very very wrong with her system. That's our feeling anyway.

Link to comment
Share on other sites

Don't rule out PANDAs or PANS. My kids had a long history of strep, pharyngitis, sinus infections, ear infections, and impetigo. They do not mount the titers. Both have improved with antibiotics and my oldest is in complete remission.

 

Their triggers over the years were:

 

Loose Teeth/strep tied for the worst exacerbations.

Strep

IMpetigo

Staph

GI infections

 

Listed in order of the worst triggers to the more manageable. Try the treatment with a clinical diagnosis the response will be the true diagnosis. Good luck.

Link to comment
Share on other sites

My son has never had an elevated titer - and we've had SCORES of postive strep tests. I believe it's something like 27% of the population will never have a rise in strep titers even with existence of an active infection. (Don't quote me on that number - but that's what I think I remember Dr. M telling me, and I think it's posted in the helpful threads up top.)

 

If you are unsure as to when the symptoms started related to infection, I would start keeping a log. We used a number scale to try to be objective - 0-9: 0 being that symptom wasn't present - 9 being that symptoms made our son non-functional. It helped us see a few things - first of all the obvious relationship to strep for our son - even just an exposure set him off. It also helped us monitor improvement when we were first starting treatment.

 

We had very cooperative teachers when we started the journey - unfortunately, his special ed pre-k teacher never quite got the hang of what we needed out of the logs so we stopped tracking - but he's THRIVED for almost 3 years in her class and will be ready for mainstream K next year - so we considered it an okay trade off.

 

Another thing you might try is to give your daughter some ibuprofen when the symptoms get bad, this has helped a lot of kids find some temporary relief of symptoms.

 

Good luck!

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...