Help to diagnose

[Alyonushka]

Hello. I am new here. But I really need someone's advice.

My daughter is 10 years old. 3 years ago my daughter started having OCD symptoms, she was washing hands a lot, and was worrying about a lot of things, she was tested positive for strep, after antibiotics she got better. Pediatrician thought she probably has Pandas.

 

Now, about 5-6 weeks my daughter started to have anxieties at evening before she would fall asleep. She was saying that she worrying about something and she doesn't know why. Later she started having sexual thoughts about everyone she knows. (She doesn't know what sex really is, mostly her thoughts was about kissing, hugging...) This thoughts was bothering her a lot. Later she started having thoughts that she's hurting someone with knife, sister, mom, dad, friends... That was really scary, because in general she is very kind and loving So, I so it thought that Pandas came back, so we went to see a doctor.

My daughter had rapid strep test that was positive, after that they did culture strep test that came negative. But she was on antibiotics for 10 days anyway. Symptoms didn't go away after antibiotics. Later we did a blood test that showed my daughter didn't have strep. That is why pediatrician didn't think my daughter has Pandas. I don't know what to think. We went to neurologist and he wanted my daughter to have MRI. Also doctor recommended to see it's a psychiatrist. But I really scared to go to psychiatrist, I am afraid that doctor will make a wrong diagnosis or will put my daughter on very strong medicine.

For now I am giving my daughter vitamin B-complex, glycine, probiotics and chamomile.

Also she doesn't eat sugar and caffeine. Sometimes my daughter feels normal for couple of days and then she starts having bad thoughts again. She is having irritability sometimes, and starting thinking about losing weight, and she is not fat.

 

I Will appreciate any comments. Thank you.

[lw47]

I am convinced your daughter has PANDAS. She has some of the same symptoms as mine - especially the thoughts and washing, and anxiety. She needs to be on antibiotics to prevent strep, and you need to get her in to see a PANDAS specialist. My daughter used to respond to antibiotics, but stopped and needed IVIG recently. Go see Dr. K in Chicago, or Dr.L in DC. Dr. K does phone consults first if you're out of town. Do not waste your time with naysayers. She needs a specialist. Good luck! It can get better with treatment.

[Alyonushka]

I am convinced your daughter has PANDAS. She has some of the same symptoms as mine - especially the thoughts and washing, and anxiety. She needs to be on antibiotics to prevent strep, and you need to get her in to see a PANDAS specialist. My daughter used to respond to antibiotics, but stopped and needed IVIG recently. Go see Dr. K in Chicago, or Dr.L in DC. Dr. K does phone consults first if you're out of town. Do not waste your time with naysayers. She needs a specialist. Good luck! It can get better with treatment.

Looks like that. But I don't know why antibiotics didn't help.

[wisdom_seeker]

She may have PANS, the umbrella category that does not require strep to be the causative agent, but has the same autoinflammatory effects on the brain, and so the same symptoms.

 

It's frustrating when you can't identify the cause easily, because then you can't test for susceptibility to antibiotic X or Y. That's the situation we're in. But my son did improve on a prednisone burst, which showed that the cause was inflammatory.

 

Had she been ill with anything in the couple of months beforehand?

[wisdom_seeker]

Actually, I want to clarify what I wrote: your daughter has PANDAS, since she did have strep-associated OCD in the past, and she is having a PANS flare. The only question is whether this is a strep-associated flare.... or from another bacterial infection.

 

Now why might she have had a negative culture? And which test is the more accurate?

 

The rapid test. (You need the culture to do susceptibility testing, or if the rapid test is negative, but if the rapid test is positive, I claim that's definitive). Here's the expanded argument:

 

According to a large literature review of rapid strep test accuracy, the rapid strep test is highly specific -- in the quote below, according to a large meta-analysis:
96% of kids who test positive on rapid strep do test positive on culture [meaning on a well-done follow up culture or blood agar]. That's why guidelines in the US and Europe say that you can rely on the rapid test alone.

 

Sensitivity = % of finding a positive if it is truly infected

specificity = likelihood of a positive being a true positive.

 

 

 

Ultimately, the investigators included 48 studies, of which 36 took place in developed countries and 12 in developing countries. The studies covered 23,934 patients. Results suggest an overall sensitivity and specificity of 0.86 (95% confidence interval [CI], 0.83 - 0.88) and 0.96 (95% CI, 0.94 - 0.97), respectively.
Estimates of sensitivity and specificity in pediatric cases were similar (0.87 [95% CI, 0.84 - 0.89] and 0.96 [95% CI, 0.95 - 0.97], respectively).

So in the above review of studies, the rapid test missed 11-16% of the true strep cases, (false negatives) however a positive rapid test would be a true positive in 95-97% of the time (3-5% false positive).

 

Molecular-based RADTs, such as DNA probes, polymerase chain reaction, and fluorescence in situ hybridization, were the most accurate (pooled sensitivity, 0.92 [95% CI, 0.89 - 0.95]; specificity, 0.99 [95% CI, 0.97 - 0.99]),

 

Meaning that when using these current rapid GAS test technologies, 99% of the time a positive rapid test is a correct reflection of a strep infection.

 

So why might your daughter test negative on a culture? Here are some ideas:

1. If it had been a while since her infection, her body might have cleared most of the infection, leaving few live cocci. Perhaps only left over on one part of one tonsil, or maybe even just in one sinus, with post-nasal drip infected on one side, but not the tonsils.
   
   (Analogy: I get frequent sinusitis and I have asthma. Because I sleep on my left, if I have only a smoldering infection it's on the left. In addition to left cheek pain, I typically have left-sided sore throat, swollen neck nodes on the left, both from the left-sided post-nasal drip, and left-sided chest tightness, so I know it can get lateralized this way).
   
2. If she gagged enough on the rapid test swab that she gagged almost instantly on the culture swab, it's quite possible the RN/MD wasn't able to get an adequate throat culture swab. (Adequate requires both tonsils and the back of the throat. ... for the reason in #1. W/o that you can get a false negative.)
   
3. If the culture was read after 24 hrs and discarded, rather than cultured for 72 hrs, rare strep might not have had time to grow enough and would have been falsely read as negative.
   
4. Or, if the strep cells are mostly dead, then their DNA will still be identified on the rapid strep test, (DNA/protein based), but dead cells will not grow on a culture.
   
5. Finally, apparently occasionally strep grows w/in epithelial cells, and would require a scrape/punch to get live strep organisms and a longer(?) anaerobic culture. The rapid strep test does not care whether the strep DNA found is aerobic or anaerobic the test simply looks for DNA or cell fragments. (DNA probe, PCR, etc).

Sources -- I can come up with more, but it's late.

1. Medscape: "Rapid Strep test accurate" 9/8/14
   http://www.medscape.com/viewarticle/831298 (free registration)
   
2. http://latitudes.org/forums/index.php?showtopic=13068
   (others who have your situation, trying to figure out why)
   For #4, read Stephanie's recollection
   "....Our ped later explained why [positive rapid, neg culture].... Something about [her] strep being "dead cells" meaning that since he had been exposed to azith that week (his usual prophylactic dose), whatever grew back from that was only able to show up on the rapid."

[Alyonushka]

Thank you so much for you comments. I feel that I am not alone. My daughter still have her thoughts and fear, specialty after she eats something with sugar, as I noticed.

We going to have MRI of the brain on Tuesday. I was thinking if I will return to re pediatrician what kind of tests we should do? I don't think she has Lyme.

She had a cold on the end of Semptemer, possible that when everything started little by little.

[Alyonushka]

We had MRI, everything looks normal.

After that we went to pediatrician and we asked to test my daughter for some infections and bacterias. Today we got a call from our Doctor and she said my daughter tested positive for Mycoplasma. Today we started 5 day antibiotics Azithromycin. We hope that all OCD and anxiety symptoms will be gone.

I still think that we have PANS.

[pr40]

5 day of ABX may not do it. You may see results right away but for many people changes are very slow and gradual.

mycoplasma is very hard to treat, by the way. you may want to read about it.

[Alyonushka]

5 day of ABX may not do it. You may see results right away but for many people changes are very slow and gradual.

mycoplasma is very hard to treat, by the way. you may want to read about it.

Wow. What should I do? I hope it's will go away.

[Alyonushka]

Some news:

After antibiotics bad thoughts were gone. And my daughter was feeling normal.

Recently she started having anxiety, I hope bad thoughts not gonna come back.

We went to a pediatrician who specializes in viruses. We did a special test to find out for sure if my daughter still has has mycoplasma. We didn't see a psychiatrist yet.

I don't want my daughter to be on drugs for anxiety. We hope to hear from doctor soon about mycoplasma.

For now I am giving her vitamin B, magnesium, vitamin D

[wisdom_seeker]

Since the antibiotics made the bad thoughts go away and made her feel normal, but symptoms returned after the azythromycin got out of her system (about 10- days after she began, for it has a very long half-life), then you know the antibiotics were the right thing, but she did not get them for long enough to really get rid of the infection, merely to suppress it for a while.

 

My kids used to get frequent sinusitis, and the MD's rule was to stay on until all symptoms were gone + four days, and if the symptoms returned within a week, to IMMEDIATELY call and he'll put DS back on the antibiotic.

 

My suggestion (as a non-MD) is that you ask to re-start her on Augmentin, even while you wait for the results of the mycoplasma test. The reason for doing it quickly is that the bacterial load is likely lower now, and you don't want it to have the time to rebuild to the previous level. And this may also reduce the damage to her blood-brain-barrier.

 

Good luck. Please let us know how it goes.

[Wombat140]

My suggestion (as a non-MD) is that you ask to re-start her on Augmentin, even while you wait for the results of the mycoplasma test.

Wisdom-seeker - did you mean to say azithromycin, not Augmentin? It was azithromycin that Alyonushka's daughter was improving on, and I don't think Augmentin is usually supposed to work for Mycoplasma. (Just pointing that out for Alyonushka's benefit, really.)