Thursday, March 13, 2014

PANDAS: A list of some of the most important things I have learned.

1)  Once Pandas is tripped off, new episodes can be brought on by anything that turns on the auto-immune system: Flu, sore throat, allergies, cuts/scrapes, lost teeth, stress, exposure to somebody else whom is sick. This happens because once you have misguided T cells, the autoimmune system has what is called a working memory. So anything that causes an autoimmune reaction, the same misguided T cells will be made over and over,  hence, a Pandas flare.

2)  Much of the autoimmune system is in the gut. Probiotics are critical. When the gut is overrun by bad bacteria and not enough gut flora, an inflammatory response will result. "Happy Gut/Happy Brain".  "Leaky Gut/Leaky Brain". Your neurotransmitters are also partly manufactured in your gut.  If your gut is unbalanced, your neurotransmitters can be unbalanced as well.  Actually, science is focusing more and more on the relationship between the gut and neuropsychiatric illnesses. If your interested, google Dr. James Greenblatt.

3)  Antibiotics works for 3 reasons with Pandas. 1) It helps to eradicate the invader. 2) It is an anti-inflammatory. 3) It  tells the immune system to turn off. With Pandas, part of the problem is that the immune system does not turn off by itself and keeps making antibodies because it is mistaking certain cells in the brain that have a similar protein structure as Strep. The immune system thinks the body is still sick and keeps making antibodies.  Remember, once this disorder, "mistaken identity" issue is tripped off, working memory enters into the drama.

4)  Motrin and like anti-inflammatories are good for taming down a flare, but not a cure. They are more a band-aide. They do have their role in treating Pandas, but be careful not to overuse.  I have learned not to use Motrin often, because it can mask symptoms and the flare can get out of control and harder to treat...I go to antibiotics if my child is looking symptomatic for more then 24 hours.

5)  Curcumin is a natural anti-inflammatory and good for Pandas children. Turmeric Force, by New Chapter has been great. It is like a constant stream of anti-inflammatory running through my child's body...It appears to be able to cross the BBB as well. No motrin and no flares...

6)  Yelling/Reprimanding a child in the gripes of Pandas will make it worse.

7)  IVIG is wonderful, but not an instant cure. It takes up to a full year or more for its full effect on the immune system.

8)  Flares come and go. Even after IVIG. The hopeful result is that they are farther in between,  less intense, and recover faster.  The difference between a child whom is treated and not treated (IVIG is not only option), is the big picture outcome: "Eventually all Pandas children will fully recover".  " It is the  child never treated that can become lifelong and chronic". "Never treated" meaning not addressing Pandas from an autoimmune approach.

9)  After a long flare, Pandas behaviors can become a habit, and even who they are.  It is important to know your child well and determine the difference. I return to holding my child accountable for his actions as soon as possible after a flare. If  my son is able to self correct,  I know he is done with the flare.

10)  The wax/wane pattern can last several weeks after a flare, and it is the normal part of the healing process.  The important thing to look for is continued improvement while this is happening.

11)  For us, a Tonsillectomy was very helpful.  It is theorized that the Tonsils which act as a garbage collector of past infections can leach out a steady stream of these back into the system. This can turn on  the autoimmune system and cause  flares over and over again.

12)  Always re-test any child after a Strep infection has been treated with antibiotics.  Always.

13) When deciding to supplement, go slowly, adding one supplement at a time. If you start off with too many at the same time, you will not get a good read on what works and what doesn't. Often, your child will react poorly to a supplement you have chosen. If you have started several all at the same time, you will not know which one is the culprit.

14)  You and your child will get through this.