Pandas 6 year old/need help SC/NC

[AllieMood]

Hello! I need suggestions for a doctor in SC or NC, or nearby (willing to drive anywhere)! We are in our 4th episode. First two episodes successfully treated with antibiotics (first ped told me it was behavioral issues, begged my second pediatrician to give her antibiotics after hearing of pandas---doc agreed when she failed a strep test and then was given 10day round of antibiotics which worked twice). Next episode didn't ever seem to fully clear up. All of these episodes were marked by tics (hand licking, throat clearing, and fears/anxieties). This episode very different, and not clearing up after just finishing zpak. I believe this episode was sparked by the flu most vaccine (I had NO idea this was not a good idea)! Received vaccine Thursday, symptoms showed up next day. Symptoms this time- separation anxiety, ADD type behavior, outbursts, chocking while wasting, saying awful things like. "I'm so horrible. I'm a terrible person." I am torn apart and heartbroken for my sweet girl, especially seeing this round of antibiotics is not working. What next? What do I do? Any doctor suggestions near me?

[lw47]

At this point, you most likely need to see a PANDAS expert for potentially long term antibiotics and IVIG. Dr. L in D.C. or Dr.K in Chicago. Just google those and PANDAS and it will pop up. They both do IVIG. The more episodes, the harder to treat with just antibiotics. Same thing happened with my daughter, who is now 10. She just had second IVIG. Good luck.

[mama2alex]

Another option would be to find an integrative doctor closer to home who can see her long term. This tends to be a marathon rather than a sprint, so it can be a good idea to have a doctor you can work with over the long haul to get her back to full health. Ideally you'd find an integrative M.D. who knows how to look for and treat a range of infections and immune systems issues that can be involved in PANDAS/PANS, and uses all the tools in the toolbox (e.g., antibiotics, vitamin/mineral supplements, herbs, homeopathy, IVIG if needed, etc).

 

Also, you can and should report her vaccine reaction to VAERS (Vaccine Adverse Event Reporting System) because most likely her doctor will not. Flu mist is a live virus vaccine and definitely contra-indicated in PANDAS/PANS. I would stay away from all vaccines while she's trying to get well, as their entire purpose is to stimulate the immune system into creating antibodies.

[AllieMood]

lw47 and Mama2Alex,

Thank you for your response. Sorry for my typos in original, I was headed in to her school to meet with her teacher, who wrote us last week to say "her behavior isn't normal, I'm worried." We are hankful for a kindergarten teacher who notices this behavior (a silver lining). She stayed home from school last week because she was scared and inconsolable. I would love to find someone nearby that I can meet with regularly. How do I find these doctors? I have been on the phone for hours, and even went to the medical university where a "pandas preferred doctor" was listed, only to be turned away. I fear I downplayed her symptoms in my original post. I see there is a doctor, O'Conner in Charlotte NC. 3 hour assessment is $1,000 dollars. Is this normal? Will I leave with answers and treatment options? I know I am new to this network, so I will take any advice, input, words I can get- because I feel completely helpless. I want my baby back. I don't want her to be in pain and in fear, and with each episode I am getting more and more fearful that SHE won't ever be free again.

[Mom23boys]

Dr. O'Conner has a full time allergy practice and also sees PANDAS patients. Dr. Latimer in DC is a pediatric neurologist, former head of Pediatric Neurology at Georgetown and is one of the top doctors in the nation for PANDAS and is on the cutting edge of research. She publishes at least one (usually more) papers a year addressing various issues that arise in PANDAS cases. My sister saw both (Dr. O'Conner did her IVIG because she was local, but it was prescribed by Dr. L). Between the two, I would definitely see Dr. L. Yes, it is a further drive but I would go to the top.