We know about PANS/PANDAS. We need the rest of the world to catch up.
We know about PANS/PANDAS. We need the rest of the world to catch up. Let’s talk about sharing our story and advocacy on PANS PANDAS Awareness Day I am not...
Everything changed at 4
We wish nothing but healing wishes for Stori. Stori’s mom shared her story with us on the day of PANS PANDAS Awareness Action Week, when we shared many stories....
I’m determined to educate people about this illness
Not feeling alone is sometimes one of the most important parts of our PANS/PANDAS journey. I am so glad this brave 11th grader shared her story. Others see she...
Sudden onset and Tick-Borne illness does happen
Often we only think of tick-borne illnesses, like Lyme disease, as having a slow, gradual onset. We see acute physical symptoms and then months later we see neurologic or...
October 7, 2023
Susan Swedo, MD – The importance of prompt recognition and appropriate treatment of PANS/PANDAS
If the embedded video link does not play on this page, please watch directly on YouTube. Symposiums ASPIRE was invited by the Associazione Genitori Pans Pandas Bge Organizzazione...
The importance of feeling validated and finding community
After being at a play date where a mother informed me that her brother was a neurologist and we should look into PANDAS, I had no idea where to...
Not “just” ADHD
Just like Holden, parents often hear about PANS/PANDAS through word of mouth or knowing a family with a kiddo already diagnosed. So, keep talking about PANS/PANDAS wherever you go....
A Story of Restricted Eating and Binging (and a little cake baking)
My son’s PANDAS journey began the way that most others have. B was in first grade, and one day he was our silly, mischievous, bright child; the next he...
October 6, 2023
So Much More Than the Terrible Twos
“Oh, but he has always been like that”. Often, that is what parents hear from dismissive providers or family members when they start discussing whether their child’s...
Finally back in school and feeling better!
After you read this story, imagine what it is like for all those children who are not diagnosed correctly. You can paint a pretty bleak picture in your mind...
Intravenous immunoglobulin treatment improves multiple neuropsychiatric outcomes in patients with pediatric acute-onset neuropsychiatric syndrome
Eremija J, Patel S, Rice S, Daines M. Intravenous immunoglobulin treatment improves multiple neuropsychiatric outcomes in patients with pediatric acute-onset neuropsychiatric syndrome. Front Pediatr. 2023 Oct 16;11:1229150. doi: 10.3389/fped.2023.1229150. PMID: 37908968; PMCID: PMC10613689.
- A 5-year retrospective study was undertaken in Children’s Postinfectious Autoimmune Encephalopathy Center at University of Arizona.
- 12 children diagnosed with PANS and treated with immunomodulatory IVIG dose who completed neuropsychological testing before and after treatment
- Participants received 1–7 IVIG courses.
- Improvement occurred in 11/12 patients, in one or multiple domains/subdomains, independently of time between disease onset and IVIG initiation (0–7 years)
- Improvement was primarily seen in memory (58%), sensory-motor (37%) and visual-motor integration (30%).
- 5/12 had hypogammaglobulinemia requiring ongoing IVIG replacement. Emphasizes the presumed role of immune dysfunction in disease pathogenesis.
- 1/12 had isolated low IgA. 1/12 discontinued IVIG therapy due to severe adverse effects
October 5, 2023
Finally the right doctor and the right treatment
Finding the right doctor matters. We know there are families where the stars align and they get seen by the right doctor at the right time and get the...