pandas

[dee45]

Hello everyone,

sorry if I seem to have so many questions but I rely on all your insight and experience. When I first took my son to the neurologist a year and half ago I mentioned PANDAS and she dismissed it by saying there was not enough conclusive data to support this theory in tics. Is this something I shoud push to have my son tested for or not??

 

Thanks again,

Deanna

[Chemar]

absolutely yes!

 

so many conventional doctors dismiss PANDAS & PITANDS as "not enough evidence etc" when honestly, it is all around them!! Kids with these neuro issues increasing in alarming numbers and many related to microbes, not just the strep in PANDAS. I am alarmed at how much untreated Lyme Disease is being misdx so often too it seems

 

they said the same re the vaccine-autism connection and now look at the court cases being won by parents !

 

but yes, checking whether PANDAS is a good step if child meets the criteria

 

not sure if you have been to our PANDAS forum but there is a lot of good info there, as well as in the search archives on this forum too. The PANDAS forum was split off recently as more and more parents found us who were desperately looking for answers other than the one that doctor gave you Deanna

 

how I wish they would truly educate themselves and think outside of their outdated textbooks Most of all listen to the info their patients bring them and at least investigate!!

 

ok off my soapbox. lol I get very irked by doctors dismissing things they know little about.

 

here is the link to the PANDAS forum

http://www.latitudes.org/forums/index.php?showforum=17

[dee45]

Hi,

if he meets the criteria and they test and he is postive--it seems to me there is no treatment--am I correct? I am having processing issues LOL--thanks again

[colleenrn]

Hi dee45,

There are treatments for PANDAS and I am so sorry that your physician so quickly dismissed it. Can you give a history of your son and I assure you, people will comment and help you! Hang in there! have you started reading posts on the PANDAS forum?

Colleen

[dee45]

Hi,

my son is 9 and a half and started with eye rolling and some facial tics about a year and half ago--he then replaced them with vocal tics I not knowing any better started corrected him not even thinking tics/tourettes--then they were replaced with him thrusting his head forward--I am registered nurse so a light bulb went off in my head and I thought tourettes the neurologist confirmed this however her solution was to medicate--I initially followed that route, but that was before I started educating myself--I am weaning the clonidine , modifying his diet and incorporating vitamins--the tics have been worse over the last couple weeks he seemed to be doing so well on the vitamins--i am now tweaking his vitamins--any suggestions would be appreciated--god bless.

 

Deanna

[EAMom]

Good grief...it would have been wonderful if you doc had done a throat culture the onset of tics instead of just dismissing the PANDAS idea.

 

It still wouldn't hurt to get a throat culture (could be positive for months or years if you son is a carrier) and also strep titers. (Low strep titers don't rule out PANDAS however!) Any OCD, urinary issues, ADHD, anxiety, separation anxiety? Unfortunately there is not a simple "test for PANDAS" (the closest to this would perhaps be a steroid burst...but even that isn't full-proof!) Some PANDAS kids will culture neg but still have strep that is hiding out elsewhere in the body (eg sinuses).

 

Response to antibiotics (azithromycin is what works best for many) would be suggestive of PANDAS. I would give the Azith. at least 2 mo. in the case of tics. It took our dd 6 weeks to get rid of her tics on the Azith. (OCD went away after 2 weeks.)

 

I would also culture other family members for strep, to check for other carriers.

 

Here is some basic info. on PANDAS http://www.webpediatrics.com/pandas.html

 

Unfortunately, many many neurologists dismiss PANDAS outright (with out even doing a simple throat culture to check for strep!) because they "don't believe in it". Of course you'll never find it if you keep your eyes shut and tell all your patients it doesn't exist.

 

If you want to know more post on the PANDAS forum and lots of people will help you out.

[dee45]

Hi,'should I just ask them to draw a strept titer at this point??

 

Deanna

[dee45]

Hi,I am asking for the following to be drawn on my son--ASO titer and the anti-Dnase-B-titer is this all I should ask for???

 

Deanna

[Chemar]

Deanna as far as I know it is advised to do the blood titres AS WELL AS a throat culture(not just the rapid throat swab test)

 

the PANDAS parents know more on this tho

[EAMom]

Yes, do a throat culture on your son in addition to strep titers. I would also culture family members (esp. other children/siblings) to check for carriers. Our dd was culture positive 2 mo. after FEVER (presumed strep infection, onset of behavior change) but her titers were low. Her sister was also positive (a strep carrier). Some kids will be the other way around, neg culture, but high titers.

 

PANDAS is tricky since cultures and titers aren't always positive with these kids. The history (for example, worsening of symptoms after a sibling comes down with strep), pattern of symptoms, sometimes explosive onset...are all suggestive. You have to look at all the pieces of the puzzle.

 

If everything is negative I would still watch and see if there is a pattern that could be PANDAS-like. If you son suddenly worsens or develops new symptoms, I would culture again. If your son worsens after dental cleanings/procedures I would get a throat culture then (could be stress or could be strep from the throat entering the bloodstream).

 

For example, if your son is currently "doing well on the vitamins" it might actually be because he currently doesn't have a strep infection/exposure. If his tics/behavior get worse again, it would get another culture (and culture famly members as well).

 

Some people have done a trial of Azith. (1-2mo). You would need to find a doc open to that though. Certainly, the abs (IMO) are safer overall than many of the anti-tic or psych. drugs they use on kids with tourettes.

[dee45]

Hi,

I have an order for the labs, but you think I should do a throat culture as well??

Thanks for the input!

 

Deanna

[EAMom]

Yes, definitely do the throat culture. Do the 72 hour if the rapid is negative.

 

Also do throat culture family members (esp. siblings/children) to check for carriers.

 

Even if all the cultures are currently negative, I would repeat cultures if symptoms start to worsen again.

 

(re-read my response from yesterday 8:55pm for more details)

[dee45]

Ok thanks for the update---its funny because every time my kids have had strept the rapid is always negative but the one they send out comes back positive. Thanks again.

 

Deanna

[dee45]

one more question what is the appropriate treatment if my son is positive?? is the antiobitic regime?? thanks

 

Deanna

[EAMom]

Many PANDAS kids on the forum are on prophylactic abs (sometimes a lower dose than therapeutic). If your son currently has a strep infection you would want to of course do a higher therapeutic course of abs first. Some kids just stay on the higher dose long term (that is what my dd is doing).

 

Antibiotics don't work effectively for all PANDAS kids (or stop working after a period of time). Then, IVIG should be considered.