I too heard that it was "coming".
On a different note I wanted to share some very practical tips I got out of the conference.
-each child should have their own tooth paste and their brushes and paste should be stored separately. We bought little plastic pencil boxes and gave each kid their own set if brushes and paste that we will store separately and run through the dishwasher periodically. I never thought of the strep being transmitted from paste to brush!
-Peggy Chapman mentioned that a flare can be brought in by a simple cold or virus, even if the child doesn't seem to contract it. Another cause of flares are loose teeth or teeth coming in. Any source of inflammation in the body can set off a flare. She said not to panic. These types if flares general last only 8 days and they will return to their baseline soon. That gave me great perspective!
-Many of the doctors stated they have seen good results from tonsillectomy. Correct me if I'm wrong, but I believe it was Dr. Latimer that said she likes to see them get a dose of IV steroids prior to surgery as the post surgical inflammation can set off a flare.
-the head of the MGH CBT program gave guidelines on CBT for PANDAS. Do not start CBT or practice ERP during a flare. Instead work on relaxation techniques and crisis management. When a child is well enough resume treatments. Even after remission its a good idea to continue to meet with your therapist for "check in" sessions once a month so kids retain their skills and will have more resources in case they flare again.
-Dr Swedo reminded all of us not to "chase titres" because they can remain elevated for a year or more post infection. She also started out the conference by reviewing her criteria for PANDAS and urged us to look elsewhere if we did not remember the day and hour that our child changed. Dr. T respectfully disagreed later in the conference, but can appreciate why they need to set such specific criteria until the hypothesis are proven.
-Dr. Bock gave his talk about the gut/brain connection. He made us all repeat after him, "leaky gut, leaky brain." He said curcumin is a great alternative to ibuprofen because long term use of it can cause the gut to become impermeable. He also said we should check for and treat yeast. Kids that are on long term antibiotics are especially at risk for yeast.
-several doctors discussed briefly the importance of vitamin D. The range they like to see our PANDAS kids is between 50 and 70. The low end of normal is around 30 but this is too low.
-Peggy Chapman reviewed how to handle a melt down. It work!! Check her slide show for details. She also gave advice on how to explain PANDAS to children.
-Dr. Swedo said that it can take an entire year for the full benefits of IV IG. Dr. Walter said that you are considered a "responder" if you experience a dramatic improvement of symptoms within the first few months. Improvement is measured using Y-bocs (Yale brown OCD test) Dr. Walter would not give a second treatment if there the patient didn't respond the first time. Her represented studies showed the the the second IV IG showed less dramatic improvement than the first.
Dr. Swedo said the plasmapheresis is only available at very few locations in the country and is therefore reserved for the most life threatening cases. It is a safer and more effective treatment than IV IG. Correct me if in wrong but I heard her say that plasmapheresis is an instant cure.
Please feel free to add advice and info that you found particularly helpful.
Edited by JoyBop, 14 November 2013 - 03:57 PM.