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Joint pain related to PANDAS?


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Joint pain and swelling is not part of the PANDAS diagnostic criteria and I would resist the temptation to put it under this umbrella. Other infections, such as lyme, can cause joint pain and swelling in addition to neuropsych symptoms. I'm sure many other health issues can cause this as well. FWIW, I'd keep this on a list of outlier symptoms to be monitored or investigated separately from PANDAS. It's not uncommon for our kids to have more than one issue going on and I personally paid a price for lumping it all into PANDAS when certain outlier symptoms were clues that there was more to investigate.

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DD had joint problems (particularly with her knee), but PANDAS treatment did nothing to reduce the symptoms. Then she was diagnosed with Lyme disease and within a few months of starting Lyme treatment her joint pains disappeared.

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No Lyme here. Issues with us are strep related. It might not be in the criteria, but the criteria are the main symptoms, does not list all the things we notice in our kids. The question is if we noticed joint pains and the answer is simple and honest. Yes and after reading this forum for over 2 years.... Comes up a lot. My mother in law has arthritis, sister has lupus, other sister has MS, other son got HSP, All have joint pain with flare- ups. Maybe it is a symptom that affects autoimmune issues but I do know people with lyme and other illness also get joint pain. None of our boys mention joint pain anymore now that they have been treated for PANDAS.

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Socal mom- No joint pain here- but I think the combination of what LLM and 3boysmom said is key. There are certainly LOTS of issues that come with pandas that either are impossible to list, or appear as one thing and are actually another. I think the key would be, "what does not go away with proper pandas treatment?"

 

I would imagine joint pain could be part of the autoimmune nature of pandas, could be sensory related, could be anxiety/ocd related. If it is one of these, it should go away.

 

The red flag should be, if all pandas stuff goes away, and the joint pain remains....

 

Hope this makes sense.....

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Hi my DS9 has problems with myositis (spelling). It's another immuno thing. He seems to get it a few times per year usually after a big infection. He would experience really bad leg and calf muscle pain where he couldn't move. The ped. just says "lets keep an eye on that" brilliant advice huh. That just provides more supporting evidence. I think we are going to make an appt. with Dr.B. We will have to wait till July 1 to change our insurance to an out of network plan. There is really no one here in MA to help.

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Hi my DS9 has problems with myositis (spelling). It's another immuno thing. He seems to get it a few times per year usually after a big infection. He would experience really bad leg and calf muscle pain where he couldn't move. The ped. just says "lets keep an eye on that" brilliant advice huh. That just provides more supporting evidence. I think we are going to make an appt. with Dr.B. We will have to wait till July 1 to change our insurance to an out of network plan. There is really no one here in MA to help.

 

DS had muscle spasms, leg aches, pains, severe , couldn't sleep, screaming middle of the night, joint swelling both knees- on and off for 1.5 years before sudden onset of PANDAs. Not much relief after PANDAS treatment incl. IVIG. We found Lyme, Bartonella and Babesia two months after IVIG and he had complete remission two months into the lyme abx cocktail treatment. Now after a year he had a severe relapse after exposure to strep. Dr Jones diagnosed him with CRMO- autoimmune inflammation of the bone radiating to the muscles which is an autoimmune condition he has seen in his practice that can complicate Lyme and PANDAS. Its CRMO- Chronic Relapsing Multifocal Osteomyelitis. DS also gets wrist and finger pains when this flares up. It takes a few months to go into remission. Dr J gave us Minocycline and it has helped tremendously. Inspite of Lyme and Co, PANDAS/autoimmune issues are the chief culprits with DS we have found.

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Does anyone here have experience with their child having wrist/ knee pain and has PANDAS?

 

My son has had this for a year on and off and i can't help wonder if it's related?

 

if so, what does it mean?

 

Thanks.

 

Okay here's my joint story...

 

I myself got strep a couple of years ago. We were on vacation for a week. So early in the vacation, one night I felt icky and tired (chills, like I was getting a fever). I also noticed PANDAS dd's handwriting had become completely illegible. Then my ring finger started to swell up (I actually don't remember if my finger hurt!). It was pretty weird b/c I woke up and my joint was so swollen there was no way I was going to get my wedding ring off. I was functional the whole vacation (maybe a little tired, but not bedridden). I didn't feel that sick (aside from the 1st night). But, by the time I got home from vacation my lymph nodes had swollen up so large that you could SEE them. Huge. I went to the doctor and she said well, it's either strep or mono. And, I came back positive on the strep rapid. I was like DUH! why didn't I even think of myself having strep?

 

After I went on Augmentin (I insisted on something stronger than Amoxicillin)., everything cleared up pretty quickly , including dd's handwriting. Strangely, nobody else in the family got strep from me even though we were crammed sleeping in the same room for 1 week. (PANDAS dd is on Azith.). We definitely had my younger (non-pandas) tested (throat culture a couple of times). She dd didn't even get assymptomatic strep (like she had previously from Kindergarten).

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