PANDAS and Mono
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Anonymous
| DD (12yo) has mono and has been exhibiting some really strange symptoms that correlate with PANDAS? It feels very crippling. We are not sure how she would even get mono (she doesn't really share food with anyone, even family members). Our pediatrician says PANDAS could be from strep but DD has been swabbed twice and neg for strep both times. |
Anonymous
| Pandas type symptoms can arise from other viruses in addition to strep. |
Anonymous
Can you expound on this a bit more? |
Anonymous
Sorry, I meant to write that without Strep, it is called PANS. I'm no expert, but PANS is the term you might want to look up. Not all doctors believe in PANDAS/PANS and there seen to be some quacks out there willing to take money for untested treatments, but there's enough evidence for me to believe that it's real. There are groups at Children's hospital studying it. |
Anonymous
| As a parent with two children diagnosed with PANS- it is believed that any illness can trigger the inflammation and that would be PANS. Dr. Shafrir is a local neurologist who retired and now has a small practice (he rents out offfice space and has no assistant). He was able to give us our official diagnosis after a lengthy appointment and blood work. |
Anonymous
| What did Dr. Shafrir recommend for PANS? Also, I recall there is no test. There is a Cunningham panel - but it is a costly send out lab that is not all that useful... |
Anonymous
Different poster. Re testing: generally 1. rule out other things and 2. check for evidence of virus/infection. If there is active infection, they’d obviously want to treat that first. |
Anonymous
| Is your DC on antibiotics, next step get tonsils out. Tonsil removal is a big part of recovery. |
Anonymous
poster: It is a clinical diagnosis (just like with any psychiatric disorder). He also ordered a lot of labs to see levels on various things. All his labs were labcorps but did not yield any helpful info. |
Anonymous
| If it's PANDAS get antibiotics. |