PANDAS or generalized anxiety

[reneegavin]

Hello everyone,

 

My 12 yo dd has had anxiety and minor OCDish symptoms since I can remember. She's been in therapy for the past 1 1/2 years without a ton of improvement. Lately, she's also develped minor vocal tics and sadness. I'm sure some of the sadness and mood swings is in relation to her age and getting ready for her period. However, we took her to an allergist for her excessive throat clearing, and he told us that she had a pocket in her tonsils that was causing a chronic minor tonsilitis. He asked if I wanted her swabbed for strep? She was already a nervous wreck, so since he said it wasn't a big deal if I did, I chose not to. He said it's possible she could be a carrier, but if she is, it wouldn't be a big deal. I then started to wonder...if she's a strep carrier (which I don't know for sure), could it be causing PANDAS and the source of her problems? I know I'm grasping a bit, but our next step is a thyroid profile, then a very low dose of Zoloft, which I'm not thrilled about. I asked her pediatrician, but she said that swabbing wouldn't make sense, because even if she is a carrier, it probably would not cause PANDAS, because it is not active, and she wouldn't treat it anyway. She said even if she gave her antibiotics, once she stopped taking the, it would come right back, and she won't keep a child on antibiotics permanently. My question now is, does this even sound likely to be PANDAS??? She had active strep once. We thought she had it again a few years ago, but when they did the swab, it came back negative. The symptoms for PANDAS come on very suddenly and strongly, right? Because my dd's did not. They grew over time. I don't want to miss something, but I don't want to grasp at straws either!

[peglem]

Hello everyone,

 

My 12 yo dd has had anxiety and minor OCDish symptoms since I can remember. She's been in therapy for the past 1 1/2 years without a ton of improvement. Lately, she's also develped minor vocal tics and sadness. I'm sure some of the sadness and mood swings is in relation to her age and getting ready for her period. However, we took her to an allergist for her excessive throat clearing, and he told us that she had a pocket in her tonsils that was causing a chronic minor tonsilitis. He asked if I wanted her swabbed for strep? She was already a nervous wreck, so since he said it wasn't a big deal if I did, I chose not to. He said it's possible she could be a carrier, but if she is, it wouldn't be a big deal. I then started to wonder...if she's a strep carrier (which I don't know for sure), could it be causing PANDAS and the source of her problems? I know I'm grasping a bit, but our next step is a thyroid profile, then a very low dose of Zoloft, which I'm not thrilled about. I asked her pediatrician, but she said that swabbing wouldn't make sense, because even if she is a carrier, it probably would not cause PANDAS, because it is not active, and she wouldn't treat it anyway. She said even if she gave her antibiotics, once she stopped taking the, it would come right back, and she won't keep a child on antibiotics permanently. My question now is, does this even sound likely to be PANDAS??? She had active strep once. We thought she had it again a few years ago, but when they did the swab, it came back negative. The symptoms for PANDAS come on very suddenly and strongly, right? Because my dd's did not. They grew over time. I don't want to miss something, but I don't want to grasp at straws either!

 

My PANDAS daughter is a strep carrier. Boy, is it frustrating to have doctors assuming that carriage is benign and therefore should not be treated. She does test positive on strep swabs (unless she's on abx) and does not have typical strep symptoms, but she does have behavioral symptoms to strep- anxiety, OCD, rages, tics, fine motor control problems, to name a few. The behavioral symptoms abate with the right abx. Right now you don't even know if she's a carrier, right? And, if she has a pocket in her tonsils causing chronic tonsilitis (even if it is minor), that is still an infection-ACTIVE! I'd get the swab done, if positive, ask for Zithromax (if she's a carrier, zith can help with that if its a high enough dose) and see if you see improvements in OCD and anxiety while on the abx.

So, its okay to keep your kid on zoloft, but not abx? That's nuts! Zoloft is way more dangerous than abx!

 

I'll see what I can find on strep carriage for you...there's not a lot, but doctors are assuming it is benign, w/o scientific evidence. There is not much research on this either way (but just a little that questions how benign it is)

Here's what I think is happening w/ my daughter-

Carriage, basically means that strep, which is usually an extracellular organism, has taken up residence inside epithelial cells in order to hide from the immune system. But, cells naturally perish and are replenished in the body, so as the epithelial cells are just doing that normal process, low levels of strep bacteria are constantly being released, causing the immune system to respond with antibodies (it is certain antibodies to strep causing PANDAS, not the strep itself). Additionally, whenever there is tissue damage from teeth sprouting or dental work, larger numbers of cells die and there can be a burst of strep at that time, with a spike in PANDAS symptoms as well. We've noticed (and a few others on this forum as well) that teething and dental procedures cause exacerbations in my daughter. Is your daughter cutting her 12 year molars, by any chance?

Is your pediatrician saying that she will not treat your daughter for strep unless she has classic symptoms of strep throat?

[mk8898]

Sounds similar to our story. Our ds is 10. Since about the age of six he started with mild anexity, which was the same time that he had his first strep infection. Over the last 4 years his moods would vary, which we thought it was just him being a strong willed child. He also had the throat clearing, which we thought was just him driving us crazy!!! But last May he had MAJOR anexity attacks (I'm talking an attack every 30 minutes all day long for about 2 weeks) and was diagnosed with PANDAS. We are one of the very lucky families, he was immediatly diagnosed and started on antibiotics. I would find a doctor in your area that is a PANDAS believer. Better safe then sorry!!!! Good luck to you!!!!

[peglem]

Here are some threads regarding strep carriage:

http://www.latitudes.org/forums/index.php?...&hl=carrier

 

http://www.latitudes.org/forums/index.php?...&hl=carrier

[reneegavin]

The pediatrician basically said "What's PANDAS"? When I told her, she said that if she's a carrier, the cells are not active, so it can't cause problems. SHe's seen tons of kids who are carriers, but they don't have anxiety. She said when they went for seminars about strep, they were told not to treat the carriers, because as soon as you stop the antibiotics, it will come back. She doesn't want to keep any child on antibiotics long term because of the resistance issue. I am going to call today and say I would like her swabbed anyway. It's possible that she is not even a carrier and it's not even an issue, but I won't be able to rest unless I know! She's also being tested for thyroid levels. Does it usually come back once you stop antibiotics? Also, her symptoms started before her first active strep. She was colic as a baby, sensory issues and OCD nighttime ritual as a toddler, constant worrier as a young child (all before her first strep).

[smartyjones]

Also, her symptoms started before her first active strep. She was colic as a baby, sensory issues and OCD nighttime ritual as a toddler, constant worrier as a young child (all before her first strep).

 

 

reneegavin - all before her first known active strep! the strep that i believe got the ball rolling for my son was when he was 22 months old. the only reason he was tested was b/c my older son was positive on a rapid the day before and younger, pandas son threw up the next day. that was his only symptom. otherwise, it would have been assumed he had some viral or some something and no one would have tested him for strep. it could have progressed and gotten worse and then been discovered but maybe not. his clear pandas symptoms didn't appear until about 2.5 years later.

 

my older son's only symptom was an acne-like whitehead rash on his face. other than that, he was fine. the dr. was actually shocked the rapid came back positive - she didn't think it was strep but just tested him to rule it out.

 

the symptoms you describe may not be pandas but i wouldn't be so quick to rule it out.

 

and i definitely do not believe the carrier state is "benign". i have not been able to have a dr. give me a coherent, sensible explanation of that - i don't believe they understand it themselves. our current ped is the most honest and just kind of shakes his head and says, 'yes, it's a very difficult concept.'

[thereishope]

I'm sorry to everyone I keep posting links to old threads, but this one may be of interest to you...

 

http://www.latitudes.org/forums/index.php?...ic=5520&hl=

[reneegavin]

I just called her ped. back and said I would like a throat swab anyway. I didn't talk to the doc., just the receptionist. So who knows what she'll say when we show up! If it does come out positive, I'm going to ask if, just out of curiosity, can we try a round of Zithromax, because I've talked to someone whose child had it, and it worked. If she refuses, I'll ask if she can refer me to someone who can, even if it's a specialist.

[reneegavin]

I just read the article by "Buster", and now I'm more confused. My dd symptoms do not get worse when she is ill. They wax and wane for apparently no reason, but don't get worse when sick. As a matter of fact, she's rarely ill at all, but often anxious and off and on episodes of minor tics. Does this mean it is most likely not PANDAS?

[colleenrn]

It could be PANDAS based on what you have described. IMO and experiences, I do not think that strep carriage is benign. In kids with PANDAS it is definitely not benign and needs to be erradicated. Sometimes it is difficult to erradicate strep, but is can be done. Sometimes it just requires the right antibiotics and it may need two different antibiotics. I would definitely get her swabbed and have them grow it out for a full 72 hours. If it comes back negative I would still find someone willing to put her on Zithromax for a few weeks and observe for improvement. The pocket in her tonsils that the ENT talked about is a perfect place for strep to hide. The ENT, since he wanted to swab it, may be willing to do the Zithromax regardless of the culture results.

 

Colleen

[dcmom]

Colleen- when you say two different antibiotics, what do you mean? Two at the same time, for a period of time. Have you, or anyone done this? I have been thinking about this, as I question whether we have eradicated the strep in my kids....

[peglem]

Colleen- when you say two different antibiotics, what do you mean? Two at the same time, for a period of time. Have you, or anyone done this? I have been thinking about this, as I question whether we have eradicated the strep in my kids....

 

We have, and I know there was at least one other. First we did rifampin w/ full strength augmentem, then we stayed on the aug. while we switched to zith (+ aug) and then phased out the aug, so we are just on the zith now.

The logic was that the rifampin and zith go after the intracellular bacteria, while the aug. goes after the extracellular (released by the former 2).

[colleenrn]

Yes, I was talking about two antibiotics at the same time and one of them is usaully Rifampin. In the book Clinical Management of Streptococcal Pharyngitis by Dr. Pichichero (he is a Pediatric Infectious Disease doctor in Rochester, New York) he says that, "Clindamycin and Rifampin may be the most effective in eradicating the carrier state, perhaps because some carriers have strains that localize intracellularly. Clindamycin is very similiar to Zithromax, so Zith and Rifampin would probably do the same.

 

Colleen

[dcmom]

colleen- did your kids do this?

 

peg- do you think it is working?

 

Will talk to Dr L about it this month...thanks!

[colleenrn]

No, my kids have not taken Rifampin, but I am so suspicious of my 6 year old- that even on the Zith he may still have strep lingering b/c of his huge, juicy tonsils. IF we decide to take the tonsils and adenoids out, I think I want to do the Rifampin beforehand to make sure there is not any strep left. I am reading and researching it now. Zithromax probably clairs the carrier state for most people b/c it reaches intracellular strep.

Colleen