tj21

If he will drink it, Alka Seltzer Gold is good for detox and upset stomach. My dd balked at the taste first, but it must have made her feel better since she then started asking for it. It needs to be the Gold.
 
I like Klaire Ther-biotic Detox Probiotic. It needs to be refrigerated. And Culturelle & Florastor (which does not). Some people have noted issues with Florastor though.

We had sudden onset of similar vocal tic as well (a high pitched "yelping") that went on for 10 hours non-stop, maybe at age 9 (I've forgotten!). I do think ds15 had been sick preceding that, but never tested for strep. Unfortunately, it has taken us til this year to get PANS treatment (long story for another day). ds15's Moleculera "Cunningham" panel had elevated cam Kinase auto-antibodies, which are indicated in tics, and not always elevated in Tourettes.
 
Although ds15 has a Tourettes dx due to other transient minor tics, like eye blinking and lip-smacking, the sudden vocal onset, and later severe neck/head jerking, were alarming. Only other known "tics" case in family is a first cousin of mine (and only eye blinking).
 
Anyway, we started abx treatment in March 2014 and most of ds15's tics are almost absent except during stress (or fatigue, as you mention). So, for us, PANS treatment is helping a great deal, but b/c we started so late we have a long road ahead. It sounds like you already have some success b/c you started abx treatment right away.

You touched on what has always been at the heart of a lot of my stress.....
 
"AM I DOING THE RIGHT THING?" Geez, just saying that raises my blood pressure.
 
Here is one of my "Take aways" that restored some of my sleep.
 
Truly, it is highly unlikely that anything that you do, a decision that you make in the quest to help your child that will result in a irreversible result that can't be undone.
 
In fact, this forum is filled with examples of "oops". I do not think you will find the "irreversible oops".
 
That is the good news... The even better news is that we, the parents of Pans, Pandas children are so well read, so well researched , that we often make better decisions, and if not, we move on and learn from it...
 
Sleep well!!!

Here is some wording that may be helpful:
 
As _____ symptoms may occur in a waxing and waning manner and may not be evident at all times, I recommend that the above illness and symptoms be considered in all academic planning decisions to enhance the academic progress of this patient. (You may want to be more specific with accommodations).
 
Can you pm your email to me?

If you're told a facility or doctor doesn't support Pandas, it means they won't use antibiotics as part of their protocol. I don't think there's a quick cure for Pandas/Pans. But I do think there are many things you can do to restore health and reduce the chances and severity of future flares. But my best advice is to work with an integrative doctor who's Pans friendly rather than wasting time and money chasing a quick cure. This is a marathon, not a sprint.

An old post of mine here^.
We learned we had tried to go off the risperadone too fast that weekend.
This is my fear with these drugs- they take over part of the brain functioning,
and waiting for it to 'relearn' how on it's own after removal.

Absolutely. The burden of our child's healing is upon us. It shouldn't be! Our healthcare system should be on our side and dealing with this, but Pandas/Pans is still relatively "new."
 
I wish we could fast-forward 100 years from now when (hopefully) the rest of society and healthcare will have created amazing ways to deal with our children's issues.

I am thinking of you - good luck w/the appt. Sorry I don't know much about the clinic, other than what I heard at the last PANDAS conference here (long wait to be seen, as you've mentioned, and mostly focused on research).

ds14 suffered hourly/clock-work rages/tics also, for a couple years (all on video tape b/c no one believed me), causing us to place him first, in-patient psych. hospital, then in an out-of-state therapeutic school. FINALLY started PANS treatment in March 2014 and his tics have almost disappeared since treatment started, but we have a lonngggg road of healing ahead of us.
 
Next up is probably Lyme too since I have it. And maybe gallbladder disease for ds14.
 
HBOT - good idea, that's on our list too.
 
Keep us posted re. Stanford.

I've heard good things about YouScript. Our LLMD uses it but we have not done it.
 
A couple things I was thinking when I read your post.
 
I would document timing of episodes on calendar to see if you can pick up on pattern. It will help to determine die off cycle.
 
You may be on regular anti-inflammatories but daily Enhansa and Maxi Flavone has helped our family tremendously. We used both for at least a year or longer and now only use Enhansa daily.
 
I am also wondering if you have checked him for Magnesium deficiency. IV Magnesium might help 'CALM' him but not sure if your Dr. provides vitamin/mineral IVs or is close enough to get them on a regular basis. A good way to test for Magnesium deficiencies is SpectraCell as it looks for inner cell utilization of the vitamin/mineral and is not blood serum levels. Other possibility would be to give him CALM in the evenings before bed... at least 2,000 m.g. CALM is not as effective as IV but might still help.

I agree with Rowingmom. Despite what the Tourette's doctors would have you believe, there's a lot of evidence that "TS" is an immune or biomedical condition that can also be "cured" and isn't something you just have to live with. It matters less what label you use and more what lens you use. My son's tics were once directly related to his level of infection load (strep and/or lyme). They'd show up during a herx and go away as he cleared toxins. He's been infection-free for a year (off abx) and yet his tics can still return from a yeast infection or more likely, from a mold problem. He doesn't have TS. He has a problem with eliminating toxins.
 
When we find a source of mold (not an infested basement - it can be something small like mildew in the bathroom or mold spores from house plants or a mildewed cardboard box in the basement) and we eliminate that source, his tics go away within days. That's not TS.
 
I'd really consider triggers like mold, yeast, and methylation issues/nutritional assessment. They have been key issues beyond herxing/infection for my son. It's not always "just' Pandas that can become a tic trigger. Pandas may start the ball rolling, but then the body becomes far more sensitive to other issues. Read Scot Forgenson's "Biotoxin Pathway" article - great job of explaining the cascade of events. http://www.betterhealthguy.com/images/stories/PDF/PHA/2007_06.pdf