Registration is still open for the July 27-29, 2012 IOCDF conference in Chicago!
The IOCDF has coordinated numerous PANDAS related presentations and an evening Q and A!
The PANDAS tracks include:
Friday 07/27
- Can my Child Wake Up with Severe OCD? (Presenters: Dr. Elizabeth Latimer and Parent Advocate Vickie Blavat)
- Sudden Onset OCD: PANDAS to PANS-Research Directions (Presenters: Drs. Mady Horning, Susan Swedo, and Tanya Murphy)
- Sudden Onset OCD in Children: Diagnosis, Treatment, and Therapy for PANDAS (Presenters: Drs. Susan Swedo, Eric Storch, and Michael Jenike, Parent Advocate Susan Dailey)
- PANDAS Q and A (Panel to be announced)
In addition to PANDAS specific presentations, there are also numerous other discussions that PANDAS/PANS families can benefit from. We encourage you to view the conference schedule at the IOCDF website.
For more information on the upcoming IOCDF conference, please visit their website at ocfoundation.org/conference.
At some point, they need to include that this can happen to adults as well as children!
We are progressing through the treatment protocol with our daughter who was diagnosed in May with PANDAS after almost a year of trying to figure out what was going on with her. She has responded well and some of her symptoms have improved after having her tonsils removed in early July. We may pursue IVIG–bloodworm indicates that her immune system may not be as strong as it should be.
There are several areas that I think need more attention/research:
1.Why is the basil ganglia targeted by rogue antibodies?
2.How can we better support children who are going through this after the diagnosis is made? CBT and SSRIs aren’t always enough and seem like a bandaid approach to the bigger issue
3. How can we educated pediatricians and the mental health community about the need for PANDAS work up when PANDAs symptoms are present? None of our care prividers–PCP, psychiatrist , psychiatrist –suggested the work up or even brought PANDAs up. A friend of mibe told me about it and I pushed it until my daughter was seen, diagnosed, treated and now is uktimatelt impriving. It is very upsetting that if my friend hadnt mentioned ot and i hadnt tracked down care, my daughter would still be suffering greatly.
4. How can we make IVIG available and affordable for those who would like to take that route
Thank you for considering my comments and please let me know if there is something more I can do to help.
I agree with everything you listed!
Also, your first question about why is the basal ganglia targeted is a question that Dr. Swedo herself raised at the IOCDF conference.
Let’s hope what you listed becomes reality and gets done!