Is this pandas

[Robinhubb]

Im really struggling. We saw a dr who is referring us to a rheumatologist. However we have been waiting forever form an appt. This is the longest wait ever. 

I asked my daughter if she noticed a diff on aleve, nac, and oregano. She said not much but i could tell a huge diff with aleve only. I took her off Nac because she got moody. 

Tonight she was like mom, i feel like im getting bad thoughts from the right side of my head. She said she shakes her head because she just wants it out. Said she wants her brain back. She also says she forgets things she is going to say and she gets so upset. She is nervous and figdety and gets mood swings like crazy. She wants to tell me everything bad or good and some of the harm thoughts make me cringe. 

What is this? 

[MaryAngela]

I’m sorry your daughter is still suffering and hasn’t seen much relief from the supplements.  Her symptoms sound like autoimmune encephalitis (AE).  This is the diagnosis that was used to get IVIG approved for my son from late 2017 thru present.  In 2016, a rheumatologist (who had limited experience treating PANDAS kids) prescribed a high dose of Augmentin for 30 days, which worked like magic.  Unfortunately his symptoms returned when she lowered the dose.  IVIG was not covered for PANDAS, and she refused to order under AE, because he was not experiencing seizures.  From what I read about Susannah Calahan (Brain on Fire book/movie), she was lucky to experience seizures, because that’s what led her to the doctor that diagnosed her with encephalitis.  Apparently, some people (including my DS) have encephalitis without experiencing seizures.  So his rheumatologist was wrong.  

[Robinhubb]

How did you find a new doctor that would listen and did they want Cunningham panel everytime?

[MaryAngela]

We found 3 doctors in Illinois that immediately (after seeing bloodwork) recognized this as PANDAS and/or Autoimmune Encephalitis).  Unfortunately none accepted DS medical coverage. The first said that if we could not get insurance to pay for IVIG, we needed to “beg, borrow or steal” to get it, or he would be institutionalized.  By this time we had already gone through our savings (including retirement savings) due to unpaid time off and unpaid medical expenses.  We used crowd funding to pay for first IVIG.  We saw immediate improvement, but it was not lasting.  We stopped seeing first two PANDAS MDs, mostly due to location, cost and accessibility.  Third MD ordered Cunningham Panel and was able to get IVIG covered under AE.  Although this doctor does not take DS insurance, IVIG is considered a prescription and it is covered.  I sometimes see on these posts that a child may only need 1 or 2 IVIGs.  This was not the case for my DS (possibly because the illness went untreated for so many years).  For your daughter, 1 or 2 may work.  Read the book “Saving Sammy”.  Beth Maloney’s son was cured with antibiotics alone, but again his illness went untreated for maybe a year or so.  I think that’s what makes the difference.  

I believe it’s important to find a doctor experienced in PANDAS/PANS, not just someone who is open to the possibility and willing to give you antibiotics for a period of time.