minimaxwell

Anyone have PANS/PANDAS w/out Acute onset?

22 posts in this topic

Seems to me sometimes bloodwork supports this yet it does not meet NIMH. For as much as they know,they still don't know. I am so thankful I have found this Forum, I am learning so much yet have so much to learn.

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As I read it, Swedo does not say you need to go from perfectly normal to completely nuts in 48 hrs. What she says is that it has to be a sudden and dramatic change. So maybe you had some "hmmm..." quirkiness all along. Or minor OCDish love for organization or "just rightness". But then within a short period of time, things escalate very dramatically. This is very different from kids who've always had some clinical OCD that only waxes and wanes but never really goes away (like maybe going from a 7 on the YBOCS scale to a 14, or from a 12 to a 20, but never back down to a 1 on the scale).

 

And keep in mind that her criteria is for research purposes, not clinical diagnosis. You have to be able to set criteria so that other researchers can look at a pool of kids and make sure they include the right ones in their studies so that they can replicate research findings. This has been a problem in the past. Naysayers have put non-Pandas kids into studies and said "we didn't get the same results, therefore Pandas doesn't exist". So you need rigid criteria to prevent the wrong kids from getting into a study.

 

I think it's also to prevent parents whose kids have "traditional" OCD from going down the wrong path. Antibiotics isn't going to help every case of OCD and there need to be parameters to help you decide what path offers the best chance of relief. the sudden onset or sudden/overnight increase is a fairly solid way of differentiating between these kids. But it also has to be taken in the full context of all other data.

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As I read it, Swedo does not say you need to go from perfectly normal to completely nuts in 48 hrs. What she says is that it has to be a sudden and dramatic change. So maybe you had some "hmmm..." quirkiness all along. Or minor OCDish love for organization or "just rightness". But then within a short period of time, things escalate very dramatically. This is very different from kids who've always had some clinical OCD that only waxes and wanes but never really goes away (like maybe going from a 7 on the YBOCS scale to a 14, or from a 12 to a 20, but never back down to a 1 on the scale).

 

And keep in mind that her criteria is for research purposes, not clinical diagnosis. You have to be able to set criteria so that other researchers can look at a pool of kids and make sure they include the right ones in their studies so that they can replicate research findings. This has been a problem in the past. Naysayers have put non-Pandas kids into studies and said "we didn't get the same results, therefore Pandas doesn't exist". So you need rigid criteria to prevent the wrong kids from getting into a study.

 

I think it's also to prevent parents whose kids have "traditional" OCD from going down the wrong path. Antibiotics isn't going to help every case of OCD and there need to be parameters to help you decide what path offers the best chance of relief. the sudden onset or sudden/overnight increase is a fairly solid way of differentiating between these kids. But it also has to be taken in the full context of all other data.

Dear LLM,

 

Thanks so much. I think my DD has been dealing with this for 11 years. Hard to remember exactly. There have certainly been times when she has been better ,ie more functional. Sometimes I think it is easier to tell with the kids who have tics. see does not have any. My friends child sees tics go away with abx and or motrin and steriods. Unfortunatly we did not see any changes with these.Looking forward to seeing what lVlG can do for her ocd/aniety/panic.

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My daughter's change was more subtle. I can't pinpoint the day or hour, but I can certainly pinpoint the approximate time frame (give or take a week).

 

Then one day in May 2009 when I was writing an email to her teachers describing how we are helping her at home, it hit me like a ton of bricks, she was a completely changed child from March. It was indeed a very scary moment.

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My problem with the "sudden onset" parameter has always been that it is so problematic for the under 5 y.o. children. This spectrum of illness needs to be looked at without taking ANYTHING for granted. The lower age limit is set at 3...why? because you can't get strep younger than 3? How certain are scientists about that? What about all the chronic ear infections in toddlers, they can't communicate what is going on with them! Then you add in the "normal" periods of terrible Two's and Three's.... it's a mess to figure out. My 2 y.o. nephew had strep for months. My SIL only kept taking him back to get "re-swabbed" because of my girls. He no longer had strep symptoms, but was still positive. It took 4 different courses of abx for him to get rid of strep and then they finally pulled his tonsils. He's 3 1/2 now and has never had a solid bowel movement his entire life. Her pediatrician keeps telling my SIL she's not worried about that?!?!?! What is wrong with these doctors!!!!!

 

My dd12 had a dramatic worsening in 3/2007, but that is when her condition went chronic. I was definitely concerned before that, so I guess I missed the sudden onset, that's what Dr. K told me. My dd had sky-high anti-DNAse B titers and elevated ASO. At first I thought that definitely meant strep, not sure of that either. Lots of speculation that DNAse B can rise due to other infections.....Again, how do you get to the bottom of all this when you can't take for granted that "common medical knowledge" even about lab results is actually accurate???

 

Why is the medical community so worried about parents chasing the wrong path with abx and blood tests, but not so worried about chasing the wrong path with years to find just the right psych med? It's Pandora's box that they don't want to open. Shame on them! Shame on them all.

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Hi - I agree with jag10 with regards the younger kids.

 

my dd8 was very classic presentation at 4 years old. There was no missing her sudden onset(overnight) of the whole remit of PANDAS symptoms. My ds 4 who was 7 months at the time is way more subtle. If it hadn't been for his sister he would probably never have been diagnosed. We believe, with hindsight, that he probably had his first exacerbation as young as 7 months old at the same time his sister had her first recognised episode. Again, though, with hindsight, we believe dd probably had her first unregcognised episodes sometime around 2 years old.

 

With my dd I can see a PANDAS symptom a mile off. Even when super minimal (and they can be), like a dot of black ink on a white sheet. For my ds it is much harder because I don't think we have ever really had a decent amount of time to see him at baseline. I think I know what is normal for my ds but second guess myself on what is PANDAS and what is him. I beliive my ds is the kind of kid that would normally not get dxd and would fall through the cracks as a difficult or troubled child.

Edited by dut

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As with many of the other posts, my daughter didn't fit the exact criteria either. There is still much to be learned regarding this illness. I have 3 PANS children and only one of them would I have considered an "overnight" case. That was my oldest child. My middle child was a more mild case so really not a "dramatic" onset. But with each successive episode it would get worse. Then my daughter.....Dr. M. believes she was having "mini episodes" probably in her toddler years. We always believed her to be a very stubborn, strong willed child. She was also sick alot. Had pneumonia several times, UTI's, ear infections, etc.. Her big episode that made us sit up and take notice was Nov 2011 after the flu mist. 24 hours later she refused to do her homework because she thought her handwriting was so bad and her normal stubborn behavior escalated X10. At that point things became apparent and there was no way to deny it any longer. She was eventually diagnosed with Myco p. and probably had it for years due to all the pneumonia she had since early childhood.

 

So, yes, the "acute onset" does worry me some. If I didn't have previous PANS knowledge, I would have thought this was a personality trait and probably would have let someone place a bipolar label on her or something. It's hard to define acute onset during toddler years when demanding and tantrums are a part of every day life. That's why it is so important not to let someone label your child after spending only 15 minutes with them. This is a really important issue with this disease. Best of luck....

 

Dedee

Edited by Dedee

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I do know of someone who fits this description. They are dealing with Lyme Disease (PANS). You might hop over to the Lyme forum and post your question there too.

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Our dd's issues became obvious over a period of a few months. It started at the ed of the summer with questioning about the Swine Flu...progressed to some hand washing...then more handwashing...then clothing getting contaminated...till one day, she couldn't get dressed. IT was not sudden, extreme, overnight onset.

But it was pretty clear to us that she was not the same child she was 6 months before.

 

Ater a few more months, we got a PANDAS diagnosis. We treated with abx successfully for about six months, then she declined. We eventually found Lyme and Bartonella. I sometimes wonder whether maybe PANDAS (where strep is the culprit) may cause more of the overnight, sudden onset, and something like Lyme or Bartonella builds and festers more slowly. This is just me wondering... I don't think anyone can say for sure whether the OCD, etc. that results from Lyme is due to the infection being in the brain versus the antibodies attacking the brain (the theory being PANDAS).

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Seems to me sometimes bloodwork supports this yet it does not meet NIMH. For as much as they know,they still don't know. I am so thankful I have found this Forum, I am learning so much yet have so much to learn.

 

My dd's big PANDAS explosion actually took several weeks to become full-blown, with the help 2 sets of tooth extractions (for orthodontic reasons).

 

Her behavior changed just before (moments before) her FEVER (turned out to be strep...we find out later) ...for about a month we had LOTS of tantrums, anxiety, difficult behavior, sensory defensiveness (would only wear a very limited selection of clothing) and some mild food restriction (she stopped eating breakfast, also stopped snacks). She had OCD at that point, but it was mostly hidden. At the time, I didn't know it was OCD. It was definitely not the classic hand washing stuff. She basically became an extremely difficult child, lots of tantrums/rages, I never knew what would set her off. She also stopped playing with other kids and had LOTS of anxiety about older kids. But...nothing at that point (that I knew of at the time) was OCD (or tics).

 

Then she had 2 sets of extractions (within a couple of weeks of each other). By the time the 2nd set of extractions was over, she was truly insane with full blown anorexia nervosa/distorted body image. She dropped down to 1 small meal/day and her OCD (questions about food/sugar/weight) was full-blown at that point. She dropped from almost 50 pounds to 42 pounds in a 2 week period. We think she became worse with the extractions due to stress and strep being released into her blood stream with the extractions. Once we learned about PANDAS, we insisted on a throat culture. Both my PANDAS dd and her younger sister were positive. (BTW PANDAS dd's titers were low.)

 

I often wonder what would have happened if we had not done the extractions...I don't think things would have become so bad within weeks...I think the tantrums and emotional lability would have just continued but not "come to a head" so we could ever put all the pieces together for a PANDAS diagnosis.

Edited by EAMom

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Never had sudden onset here. If it happened, it was when he was a baby. I do remember at times not being able to console DS and taking him to the doctor to have his ears checked thinking he had an ear infection or having the nurse tell me over the phone that "babies just cry sometimes." I wish I knew then what I know now but here we are 10 years later and my DS is still sick. :angry:

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"Sudden onset" is over-rated. If a child reacts to treatment, and you see a "sudden effect" from an anti-inflammatory or immune modulating treatment, now that is a much clear-er indicator in my opinion, than trying to determine the definition of sudden onset.

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Why is the medical community so worried about parents chasing the wrong path with abx and blood tests, but not so worried about chasing the wrong path with years to find just the right psych med? It's Pandora's box that they don't want to open. Shame on them! Shame on them all.

 

Agree completely.

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Thanks for all the input, truly appreciate it. My dd is scheduled for lVlG with Dr. K this Thursday. Today I started thinking about Lyme as a possible co-infection for her. She is tired all the time. Dr. T dx her as PANS myco as her trigger. He tested her for Lyme but it went to Quest so it was negative. I am driving myself crazy tonight. Should I test her for Lyme before lVlG with Igenex? Does insurance cover this usually?

 

Thanks,

Tiffani

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Thanks for all the input, truly appreciate it. My dd is scheduled for lVlG with Dr. K this Thursday. Today I started thinking about Lyme as a possible co-infection for her. She is tired all the time. Dr. T dx her as PANS myco as her trigger. He tested her for Lyme but it went to Quest so it was negative. I am driving myself crazy tonight. Should I test her for Lyme before lVlG with Igenex? Does insurance cover this usually?

 

Thanks,

Tiffani

 

I would test her first if you are suspicious. I think if you wait until after IVIG, you need to wait a while, b/c IVIG might interfere with results.

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