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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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ajcire

infectious disease doctors?

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Finally got my bloodtest results on myself. ASO was 207 (normal being less than 200) and the DNase-B was 233 (normal being less than 120).

 

The rheumatologist doesn't think this is connected to my joint issues (I think he's wrong) and since no inflammation showed in the bloodwork or is currently visable to him he said he wouldn't treat it as being caused by strep. He told me he thinks a second opinion from another rheumatologist will be the same but of course I am welcome to get one... He is mailing me the labwork I had done. He suggested instead that if I want another opinion regarding the titers to see an infectious disease doctor. Do most infectious disease doctors believe in pandas? I am asking to see one for myself, not my ds (although it might not be a bad idea if I could find one who gets it) but I have to think there is some relevance to my high titers, joint issues and my ds's pandas. I had a sudden onset of joint issues when I was 18...if I knew then what I know now I'd have obviously been checked for strep but that was not one of the things that they checked at the time. I have had issues with it on and off ever since. Just recently started thinking about the connection. I guess my question is will an infectious disease doctor likely think I am crazy or any chance of them trying to piece the puzzle?

 

When I read about high titers in adults without a strep infection it seems many things say doctors don't believe it needs to be treated...

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Our ID doc diagnosed DD with PANDAS and referred us to Dr. B. She was also dealing with Lyme and a bunch of other infections But he is unusual, most of them tow the party line.

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Our ID doc diagnosed DD with PANDAS and referred us to Dr. B. She was also dealing with Lyme and a bunch of other infections But he is unusual, most of them tow the party line.

 

 

I think you should also check yourself for lyme and co-infections. That could cause the joint pain, too. And, many of us have found that PANS (even with elevated strep titers) includes more than just the strep in our kids and in ourselves.

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Most Ids are not pandas friendly!! We have seen 6. Sounds like reactive arthritis, ask your rheumatologist about the possibility of that. Did you come back positive for hla-b27? We all have that & arthritis

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The rheumatologist mentioned reactive arthritis but he said that there is no evidence of inflammation in the bloodwork and that he doesn't visually see any right now so he wouldnt treat it. Told me I was welcome to go for a second opinion but he thinks another rheumatologist will tell me the same thing... he suggested if I was concerned about the strep titers which he says could be elevated just by my being exposed to strep that I should see an infectious disease doctor. I can't imagine seeing a doctor without discussing the fact that I have a son who does not get typical strep symptoms, who has pandas, with elevated strep titers as well but am very much afraid to go to a dr to hear I am crazy though. I am not sure what hla-b27 is. I don't know if it was tested for or not but I will be getting a copy of my bloodtest results any day (he is supposed to be mailing them to me) .

 

I hear what you are all saying on the lyme. I am not quite prepared to go that route just yet. I know the standard bloodtests are not considered reliable but those have all come back negative. I do know that this might be something that I need to consider...

 

How are wholistic/natural type doctors in regards to pandas and strep stuff in general? This is only an option for me if they take my insurance but I do know of a few here I could check into.

 

Do my strep titer results even seem significant enough to be concerned? or do they need to be even more elevated to be concerning. What are pandas doctors philosophies on parents with elevated titers.

 

Did anybody who had elevated titers that then were lowered notice a difference in symptoms within their themselves?

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HLA-B27 is a genetic marker that plays a role in many autoimmune/inflammatory conditions - including Akylosing Spondylitis, uvitis and other spondyloarthopathies. I have AS myself - and carry the marker from my mother's side (she has uvitis, and 2 uncles had AS). Many of the symptoms of AS can overlap other things - including Lyme. The most common presnetation is pain and stiffness in the back and hips, but also includes fatigue as well as artritic symptoms in other joints and extremeties. Many docs misdx AS early on as RA or other types of arthritis, unfortunately AS is degenerative, and ultimately results in fusion of the joints in the spine and hips. While being + for the HLA-B27 marker does not automatically mean you have something like AS - many folks have the marker and are fine - 93% of the population that has AS carries the HLA-B27 gene.

 

I have asked Murphy's team repeatedly if there could be a connection between HLA-B27 and PANDAS, but they don't think that there's any reason to suspect that at this point.

 

As for ID's, we've only seen on for my son, she was referred to us through Murphy's group - so we expected her to be helpful at least. She wasn't a PANDAS naysayer - per se - but working with Murphy, that would be expected. However, she brought absolutely nothing to the table other than her desire to "get my son off of long-term abx". Yes - brilliant - that's why we're here - except every time he's off abx, he pops + for strep within a week, oh, and even full stretngh abx has not prevented him from getting strep. So what's your plan? "We want to get him off abx entirely". Ok, yes, you said that already, but do you have any clue as to WHY he's getting strep so much? Is it hiding elsewhere? "The first priority is to get him off the abx." After 3 appointments of this (during which time my son got strep AGAIN!!! while on abx). I finally felt that I was on some sort of sick twisted version of "Punk'd" and never went back.

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Arial, goodness. That sounds pretty awful... a bit like the "Whose on first" routine. I am really afraid to go to an ID doctor and have them ask me what exactly I am there for because the titers don't mean anything. When my pandas believing (but not treating) pediatrician told me that my son's titers results were not at all concerning and that if I took those results to an ID doctor they would agree I had Dr. T on the other end saying the results were significant. That's where it's so hard... as you all know... when the pieces don't match up with each doctor. Of course at least with my son whose titers were high they could say well, he did have strep throat positive cultures several times to account for the titers... My first and only positive throat culture (with strep throat symptoms of severe sore throat as well) was several years ago.

 

Another question... would my titers be high even if I don't have strep just because my kids have had it? Of course if this was normal than everyone would have high titers all the time because we are all constantly exposed to it. Sigh. I don't really understand most of this which is going to make it very tricky for me to try to get my concerns across to a doctor who might not "get it"

 

As far as the HLA-B27... I would like to think that would be standard for them to check for then when someone comes in with joint issues but I'm not so sure that they checked that. I should have a copy of the results early next week. He had told me all the rest of the labs were normal except the strep but I'm not sure what else he checked for.

 

It makes me really mad that years ago when this started that no doctor suggested the possibility of strep. I feel like no matter what now when a seemingly normal healthy child presents with a sudden onset of anything my first thought is check for strep.

Edited by ajcire

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I would say go the Naturopath or LLMD route. ID doctors, from what I have heard AND 1st hand experience, are not very helpful. My DD was followed by an ID Dr for osteomyelitis (bone infection) she got in her foot bone after stepping on something and getting 3 stitches!!! Within 24 hours!!! So pediatrician made us go to Childrens Hospital to be admitted and she was there for 2 days receiving IV antibiotics (followed by 8 weeks high dose antibiotic combos). Anyway, at her 1st follow up a week out, the arrogant rude ID Dr walks in and LITERALLLY the 1stnext question is if dd has had the flu vaccine (I I had said no in the hospital.)I She then continued to pressure me about this for 5 minutes basically having a staredown with me (& I am so not confrontational). At the next and last follow up I asked her about some labs that were out of whack and she said that it was normal for my dd and most people don t believe PANDAS exists! :((

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