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cdklyn
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Does anyone have experience with their child complaining of joint pain? The last week my daughter has complained of the back of her kneee hurting. Two days ago it was the left and yesterday it was the right. She had reactive arthritis in response to a strep infection in September of last year, so naturally I look at her joints anytime she complains about hurting, but this week i've seen no swelling. I'm just wondering how common joint pain is for kids with PANS?

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My PANDAS ds (onset in Sept 2011) had joint pain for the first time in his life after having the flu last week- it was in the exact same place as your DD- back of the knees. Then it migrated to the ankles as well. It gradually got better over the span of a few days, but the first day he could not walk until I gave him Advil.

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CDKMEK and MomtoJake,

 

Migrating joint pain is a classic Lyme Disease symptom. A number of families on this forum have discovered that their PANDAS kids have Lyme and other tick-borne infections and many are seeing the PANDAS symptoms diminish as they treat for Lyme/coinfections (us included). I would recommend you both get your kids evaluated/tested by a Lyme-literate doctor (LLMD). Many of these doctors are seeing an increasing number of PANDAS kids and can treat for strep and any other infections that are involved with the overall health picture. If you go over to the Lyme forum here, you can ask more questions about this and get help finding an LLMD.

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Agree with posts above. Tested for and found Lyme at the advice of another before we knew fully what Lyme and and PANDAS were. Ds 8 has had chronic back pain for over a year now. Bought him a king size memory foam pad and folded in half for comfort. Didn't help. About a month ago had such pain behind knees that he had to sit down right away. I think his pain is much worse when he is going through a growth spurt.

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Does anyone have experience with their child complaining of joint pain? The last week my daughter has complained of the back of her kneee hurting. Two days ago it was the left and yesterday it was the right. She had reactive arthritis in response to a strep infection in September of last year, so naturally I look at her joints anytime she complains about hurting, but this week i've seen no swelling. I'm just wondering how common joint pain is for kids with PANS?

 

While I agree that migrating joint pain is a sign of lyme disease, I think you can also see it with PANS flare ups. My son had lots of joint pain when he had an ongoing sinus cyst. The immunologist measured his C3D levels and they were very hight. These complexes are antibody+antigen complexes that form when the antibody is trying to fight the infection or during an autoimmune response. His were 8 times the upper limit. Typically the body removes the complexes, but if there are many complexes and the body cannot remove them then they deposit in the kidneys, joints, and other organs until they can be removed.

 

I do not want to discourage you from pursuing lyme as a possibility - we have really received a great deal of help from a lyme doctor - but the joint pain really went away for my son when the PANS flare up subsided after sinus surgery.

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Does anyone have experience with their child complaining of joint pain? The last week my daughter has complained of the back of her kneee hurting. Two days ago it was the left and yesterday it was the right. She had reactive arthritis in response to a strep infection in September of last year, so naturally I look at her joints anytime she complains about hurting, but this week i've seen no swelling. I'm just wondering how common joint pain is for kids with PANS?

 

I had rheumatic fever when I was 18 and the backs of my knees and my collar bones were the joints that hurt. It was off and on for years. I only remember them actually swelling one time. That and a rash were the only symptoms I had when I was diagnosed.

 

Melanie

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Our PANDAS ds's original symptoms began with joint pain and muscle weakness: classic ARF symptoms that were followed 6 weeks later by SC symptoms (seizure-like episodes of choreiform movements). Several of the PANDAS specialists with whom we've consulted believe that ARF, SC, and PANDAS are all on the same "post-strep autoimmune spectrum" of illness. So Lyme is definitely something to consider, but this can also be a post-strep, RF-like symptom.

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My PANDAS dd complains regularly about joint pain. She's been tested for lyme and JRA. The testing always comes back normal and yet the joint pain remains. For my dd, it is indeed a PANDAS symptom. And a lingering one as so many of her symptoms have dissipated in the past 2 years with daily abx and two IVIgs.

Mary

from Michigan

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Our PANDAS ds's original symptoms began with joint pain and muscle weakness: classic ARF symptoms that were followed 6 weeks later by SC symptoms (seizure-like episodes of choreiform movements). Several of the PANDAS specialists with whom we've consulted believe that ARF, SC, and PANDAS are all on the same "post-strep autoimmune spectrum" of illness. So Lyme is definitely something to consider, but this can also be a post-strep, RF-like symptom.

 

 

Then there was the rheumatologist familiar with lyme who spoke at a lyme conference a couple/few years ago who said that she felt all RF she had ever seen was caused by lyme.

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My PANDAS dd complains regularly about joint pain. She's been tested for lyme and JRA. The testing always comes back normal and yet the joint pain remains. For my dd, it is indeed a PANDAS symptom. And a lingering one as so many of her symptoms have dissipated in the past 2 years with daily abx and two IVIgs.

Mary

from Michigan

 

In case you are not aware, the testing for lyme has been generally very unreliable, although more reliable results can be obtained with some tests than others, and certainly having someone who is an expert in lyme attempt to read results. Do you know what type of testing (ELISA, Western Blot, PCR, ...) and what lab (Quest, LabCorp, IGeneX, ...) was used for the lab testing, and what type of doctor reviewed the results. Word is there is a new PCR test out that is more reliable (although I personally have no experience with this test).

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