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symptoms in sibling but normal blookwork results


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My dd10 went undiagnosed because of moderate symptoms for a couple years. then it hit hard, she had ALL the symptoms, and high titers. she has now had a couple ivig's and has had good improvement. it was obvious she had pandas though. now dd5 had strep in may, we are seeing major meltdowns, some ocd and other little things that give me worry. her titers are normal, d naseb - 70 aso- 55. i am not sure where to go from here. i am hoping that those of you whose children do not show a titer response can chime in and give me some guidance as to what i should do now. i am not positive it is pandas yet, but i want to clobber it if it is. (i dont want my other child's chilhood taken away too) thanks for any help or info,

 

dan

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You already know enough about Pandas to use your judgment in that regard. So I will only address the other things it could be, based on personal experience, not meant to be a comprehensive list...

(Neither of my kids have elevated strep titers, including my son who had two extreme episodes within days of strep. Either we tested too far out past his rise or he doesn't get a rise. No way to tell. Both kids had elevated CamK II in the 180 range, DS has Pandas, lyme and possibly pyroleuria, DD has never had strep, may have lyme but we're still investigating - don't feel we've uncovered the whole picture.)

 

Things that can cause pandas-like episodes - separately or in conjunction with other illnesses:

mycoplasma

lyme (or co-infections like bartonella et al)

celiacs

yeast

mold

pyroleuria with or without involvement of heavy metals (search KPU threads on the lyme forum)

 

I know others can chime in with the things I've forgotten. It's possible it's the result of the strep infection (Pandas) and you just missed the window to catch rising titers. Or maybe she doesn't make very high titers. But these are the other things we've had to investigate and just meant as food for thought. Given that meltdowns are a big issue and may be a bigger deal than the OCD, it may be worth doing a little reading up, just to make sure something else doesn't resonate.

 

I also highly recommend CBT and ERP to weather the storm regardless of cause.

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My dd never showed a rise in titers but was considered text book PANDAS otherwise. After a couple IVIG's and not continueing to progress, we discoverd she has Lyme and Bartonella. It's possible that she just doesn't make antibodies to strep but its also possible that it was always the Lyme/bart at the core of her symtpoms. Don't know if we'll ever know. By the time she was diagnosed, everything made her symptoms worse, colds, flu, H1N1 vaccine, etc. Her immune system was all wacked out by that point.

 

Best of luck to you. If I could do it all over again, I'd see an LLMD right off the bat. Can't undo what's been done though.

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Dan- I don't know if this is true or just perception, but it seems like on this board we have a whole bunch of kids who fall into one of two categories; ones who get sick, swab/culture positive for strep, but never get a titer rise. The second group are asymptomatic for strep (aside from behaviorally), may never culture/swab positive and the only evidence that strep is related to the behavioral changes is the rise in ASO/anti-DNAseB titers.

 

My dd11 was in the second group thus she went misdiagnosed and mistreated for many, many years. Her little sister has benefitted from her battles. So though dd8 was also asymptomatic for strep, when behaviors surfaced, we knew to run titers and whalla, hers too were sky high. Fortunately, by identifying her earlier in the game, so far she has been managed with abx.

 

I'm sure there are some kids on here who have clear strep, swab positive and get the ASO/DNAseB titer rise, but it sure seems they are in the pandas minority.

 

Jill

Edited by JAG10
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My son has never had a documented case of strep and has normal titers to strep and mycoplasma. It took a year to get him diagnosed w/ PANDAS because of this. He is 9wks post IVIG and doing very well. I can't believe the changes in him. He was diagnosed because I saw The Boy Who Hops episode on the Discovery Health Channel about Sammy Maloney, did some internet research and called Dr T. Dr K reconfirmed the diagnosis and recommended IVIG. He was about as classic a presentation as you can get, just no strep titers.

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You say she had strep in May...was it confirmed strep with a throat culture? I think if you had the positive throat culture and the behavior changes followed within a few months, PANDAS is a logical diagnosis regardless of where titers are...If I remember correctly, the FAQ mentions something like this. I've heard others say if you get a positive throat culture, don't even bother with blood tests...

 

 

now dd5 had strep in may, we are seeing major meltdowns, some ocd and other little things that give me worry. her titers are normal, d naseb - 70 aso- 55.

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my older daughter (now 12) was diagnosed with Pandas and Sydenham's chorea, after just about every abx and several steroid bursts etc, she had plasmapharesis in March. she has been fine since, still on prophylactic zithromax..........now symptom free. she never had any increased strep titer/etc., and she had at least 8 or 9 blood tests over about 10 months, but almost always positive throat culture, and it was really high and really fast with the rapid strep test..

 

little one (now 6) would test "scant positive" when older one was sick, little one generally had no symptoms.....also got some strep (perianal) and had sinus problems....also negative blood work, but generally both of them went on abx if at least one tested positive for strep.

 

both kids got tonsils/adenoids out.....little one has some symptoms of hyperactivity which seem to occur when she has strep symptoms, but again, she usually doesn't test positive, or "scant positive"....but always improves after a course of zithro, or suprax also worked (she was on it for a UTI).

 

I just don't think you can exclusively go by test results, especially if you have been down this road before. I would try to abx, especially since Pandas tends to occur in siblings.

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