Adult with PANS

[Autic-GoodRiddance]

My son is 26, has no speech or much understanding of speech..severe 'autism' since 18 months... Began having very severe, sometimes very alarming tics and life controlling OCD in his teens. Before that he was making slow, steady progress. All progress stopped when the tics began 10-15 years ago. He has had many different extreme tics through the years, currently constant spitting, extreme OCD, impulsivity and prompt dependence. I have just learned of a plant that apparently is helping many tic sufferers... Look up 'Joyle' , who is a member of this group. I Also just joined the fb group she recommends, Natural care for tics and Tourette's. Pharmaceuticals have only worsened my sons condition... Also dental procedures seemed to have aggravated ...

Edited January 30, 2018 by autic-goodriddance
Incorrect name

[bobh]

It is quite common for teeth cleaning to cause flares - bacteria in the mouth have access to the bloodstream through diseased gum, and that triggers the flare.

Dr. T. has also reported that something between 10% to 30% of all those with autism have PANDAS/PANS (not sure if he was referring to just the kids, or all adults too).  He said that at an Autism One conference - I can get you the link if you want it.

It is also true that SSRI's can actually activate symptoms, according to a 37-person study done by Dr. Tanya Murphy.  I believe that it was 13 of the 37 were extremely sensitive to SSRI's, and got worse even on small doses.  When they started with 1/10 the dose, that seemed to help.

[lindaschnell]

Does anyone know of a doctor who treats PANS in adult who also has Bartonella?  I live in Sylvania/Toledo Oh/Mi area.  It is for my 35 year old daughter bitten by tic when 12 w/terrible psychological problems.  Psychiatrist totally ubawate of what integrative doctors suggest. He wants her to do shock therapy as last resort.  Please help and thank you.  Worried mom

[Coachkendra]

Dr.T of the Hudson valley was mentioned... I tried a Google search - what is this dr's name?  My daughter has unofficially (pending more testing) been diagnosed with pans/pandas.  Is like to know who this Dr is to potentially go see them as well.

 

Thank you

[bobh]

I interpreted Dr. T. to mean Dr. Trifiletti, of New Jersey.

[LordChallen]

I'm 45ish and participating here mostly because my daughter (10) has been diagnosed with pandas/pans. Oddly, her story is very similiar to my own. I was never able to finish school. About 5th grade I just sort of lost it. I was straight A's in 3rd grade, but couldn't pull off a single passing grade in 8th. High school was a joke, I dropped out every year about halfway through. But, I wasn't uneducated, I loved to learn. The day after my class graduated, I went and got my GED.

But looking back, I can see I had many of the symptoms we assign to pandas. And to this day, I know I have some auto-immune dysfunctions. I had massive headaches at least once a month since I was 3, until recently.  And throwing up was the only way to make them go away, (had to be nature reflex through, no cheating with the fingers.)

At 12 I began getting in to natural healing and self-help. Coping was tough, but . . . . I just thought it was part of the game. I'm getting old now and still know I have issues, but do OK. I've struggled my whole life without really having a name for it. 

I'm not against modern medicine, but I feel that old medicine is being overlooked. Things like salt baths, bone-broth, herbs, teas, nature walks, group support meetings, etc. I really believe that the bottom line in all of this is a healthly gut and immune system. Many modern medicines don't help in that department. They might kill something or suppress something, but they don't really "heal or support" anything, (except for probiotics, they are awesome.)

Supporting and healing the right things is more likely to help us then killing the bad thing. Things like detox are basic concepts that I try to practice a little bit everyday. And sugar. . . . . is of the devil, in every way but taste. It's not a natural part of the human diet, (mostly) and diabetes type 2 and type 3 is natures way of saying "no more."

Thanks for letting me share.

 

Edited June 1, 2018 by lordchallen