Tattoomom

Life has been sad in the Thoren house. We were hit last month with a cold/cough that didn't miss any of us, and my Olivia (10), who has been my least affected panda, has totally changed were since being sick. She was diagnosed at 7 with over-night onset and tested pos for strep, but was never as bad as her older brother and younger sister. Now, she's crippled with OCD and intrusive thoughts. She's completely lost her spark. She sad and scared. I am so over this and hate that it fucks our lives up so much... Robbing my kids of childhood. Dammit. So, I stepped up her abx from prophylaxis to treatment and have an appt for next week with the Psychiatrist.

What can I do to help her? Giving Advil & Fish oil. She's not the same. My little girl is like an empty shell.
 
Tricia

Finding an MTHFR issue was one of the best thngs that ever happened for my DD. The change in her since treating this is indescribable. She went from a kid bound for bipolar meds to a kid no one would ever, ever consider unstable. Have you tested other genes or only MTHFR?

I agree. Now you know one piece of the puzzle! You are getting there. The pieces will fall together if you keep at it.
 
Just wondering about your lyme test. DD was IND for kDa 39 which is lyme-specific. Because it showed up at all, the LLMD diagnosed lyme. The test otherwise stated her lyme result was CDC and Igenex negative. Are any other lyme-specific bands positive? Did you test from any of the co-infections?

Well, I'll leave it to the "experts" like LLM to respond to what the mutation actually translates to, but that's not necessarily "bad" news, is it? I mean, I get the impression that 1) it's fairly common, and 2) now you know what you're dealing with, so you can start tailoring your interventions to the mutation so that they're more effective?
 
Maybe this is, really, "good news" and "good news"!

In addition to wanting to avoid strep strains, if your child has any issues with histamine, I've found several sites that seem to confirm some probiotics raise histamines and some lower them. From this site (FWIW) http://salicylatesensitivity.com/forum/comments.php?DiscussionID=2683
 
friendly probiotics
for Histamine Intolerance sufferers.

Regarding Probiotics My Findings Are:

PROBIOTICS to AVOID.

Lactobaccilus Casei increases, Histamine and tyramine
Lactobaccilus Lactis
Lactobaccilus Fermetum/ Fermenti
Lactobaccilus Paracasei
Lactobaccilus Bulgarius , increases Histamine
Streptococcus Thermophilus
Enterococcus Faecium
Enterococcus Faecalis


GOOD

Lactobaccilus Acidophilus
Lactobaccilus Rhamnosus
Lactobaccilus Salivarius
Lactobaccilus Sporonges
Lactobaccilus Gasseri
Bifidobacteria Breve
Bifidobacteria Longum
Bifidobacteria Infantis
Saccromysis Boulardii
Lactobaccilus Lactis
Lactococcus Lactis
Lactobacillus Planatarum, inhibits Tyramine
L.Reuteri … elevates Histamines short term but raises anti
inflammatory camp levels
Saccharomces- Boulardii
 
Many here like Florastor aka Saccharomces Boulardii aka Sacc B because it's a "good" yeast that's supposed to crowd out bad yeast like candida and because it's a yeast, you can take it at the same time as antibiotics - unlike any other probiotics, which have to be taken at least 2 hrs away from abx or the abx will kill it.
 
My DS, always the contrarian, can't tolerate Sacc B - it makes him very aggressive, impulsive. So when you start a new probiotics, be observant for a few weeks. Some things that might make you think you're seeing a small flare of Pandas could actually be a behavioral reaction to a new probiotic.
 
I've read lots of good things about the bifido strains and the need for balance between the lactobacillus strains and the bifdo strains (heavy on the bifido strains, which is what mother's milk is high in). My new personal favorite is from Kirkman http://kirkmanlabs.com/ProductKirkman/333/1/Bifido%20Complex%E2%84%A2%20Advanced%20Formula%20-%20Hypoallergenic%20-%20New,%20Improved%20Formula/ It's not "cheap" but it's not expensive as far as probiotics go and it seems to be agreeing with DS.

Here is what we use in order of least expensive:
 
Florastor- purchase from drugstore.com or local drugstore. I always print a coupon from their website (florastor.com) before purchasing. Most times I wait until I get a 25% off coupon from CVS and purchase a few boxes at their store. They allow you to combine coupons at the same time.
 
Culturelle- same as above. Inside every box is a $2.00 off coupon.
 
Integrative Therapeutic Probiotic Pearls- I order through amazon every 3 months - automatic shipment. These are very small round capsules that are easy to swallow.
 
Klaire Ther Biotic Detox Support- they are very expensive but also my favorite. 50+ billion cfu's per capsule.
 
*all strep therm free
 
I also think Jarrow is a good brand - esp. for younger kids.

Contact the NIMH right away. I just heard Dr. Swedo speak at the OCD Foundation Conference. She wanted to word passed along that if a child had a life threatening condition due to PANDAS (such as eating/drinking refusal) they would help the child get the appropriate treatment.

if you do go for MTHFR - read your insurance policy carefully and discuss insurance coverage with your doc -- mine and ds's doc ordered it without blinking an eye when they were doing other blood work on us simply b/c I asked. I am still having trouble with insurance(a year later) -- mainly b/c they are inept -- but. . .
 
quest charges $468 -- if insurance denies -- that is the cost -- be aware of what you are doing -- even without 23andme, you can get MTHFR from some labs for somewhere around $120, I think. insurance negotiated rate is usually somewhere around 10% --- so if they pay, they would pay around $50.
 
ds is neg on all, I have A1298C and am still having trouble with what to do about that mutation only. we will likely do 23andme soon.

 
  
It seems to be very accurate in my kiddos case. They did cover MTHFR variations. Kiddo has one BUT only one . I would say it was worth it. There is a great documentary about the pluses and minuses of doing genetic testing, and it covers 23andme pretty well. I can find the link if you have not seen it yet.
 
I think it was worth it medially, and it has a lot of simply interesting information as well. I do not regret getting it, but then again, kiddo showed no serious disease traits either *whew*.

Here's a recent NPR story on this issue: http://www.npr.org/blogs/health/2013/01/17/169634045/some-types-of-insurance-can-discriminate-based-on-genes
 
I don't know that MTHFR specifically would alter your life insurance availability, as it mostly considered just one indicator of heart disease risk and you would likely be disclosing that risk by indicating a family history of related ailments. Plus, by the time life insurance becomes a major consideration in our lives - mid-life - you may already be on blood pressure medication and the life insurance co. would know that too.
 
Not that this isn't a valid consideration when deciding to do genetic testing. But you also need to weigh the value of having decades to do something about it early in life, and the impact it can have on mental health for some of our Pans kids, like my DD.
 
I used 23andMe and paid OOP, no insurance involvement. ($99 for first kit, $79 for additional kits if you order at the same time).
 
I used Igenex to test for Lyme and did submit a claim thru insurance, got reimbursed 60%. But that was ok in my case, as my DS was then diagnosed with Lyme and his LLMD used Lyme CPT codes for our visits, which were also covered by insurance at 60% as the LLMD is out-of-network.

When we did the 23andme test, we did so as anonymously as possible. It was paid for by a distant family member, it was shipped to a friends address, and I registered it under an anonymous name. If an insurance company wants the information, of course they can get it if they try hard enough, but I wanted to make it as difficult as possible for now since it is all predictions.
 
As LLM stated, we will have to disclose any known risks or known conditions when the time comes. I see no reason to make my kiddos life any more difficult than necessary. She already would never qualify for life insurance anyway, but I see no reason to make getting medical any harder than it already is.

My son also responded wonderfully to steroid taper. It is wonderful to see your happy child for a while! Dr. B says that a positive response to steroids means an autoimmune reaction is happening and that IVIg should bring relief. That held true for us until Cigna pulled the rug out from under us. We have a CDC positive test for Lyme, and clinical diagnosis for Bartonella.
 
Wish he could be taking steroids right now....
 
Ticks can be as small as a poppy seed, easily missed on a busy child.
 
Best of luck to you.

It helped when it was administered every eight weeks. It was a life saver, for him and for us.

My son has a rapid response as well. Enjoy the prednisone vacation!

My son used to feel rapid relief from prednisone within 2-3 days. It was like a sign of relief flooded over him. While prednisone is an immuno-suppressant, I've always been told that it take extended use before it will compromise your immune response. 10 days is a normal course for poison ivy and my pedi has always said there's no suppression for many weeks. So I'd guess that what you're seeing is relief from inflammation. It makes me wonder if there isn't a chronic infection of some kind still lurking. I'm glad it's bringing such great results! Not sure why you were trying to lower the zith dose but perhaps this suggests she needs to remain on abx or maybe even a combo abx to continue to treat some source of infection.

Great news! If the improvement continues, than it sounds like her behaviors are from an inflammatory condition. We have never seen such a rapid response from steriods with PANS symotoms, but who knows? My kids usually get better in 10-14 days.
Have you tried Augmentin for her?

The inflammation from the antibodies attacking the basal ganglia is what causes most the symptoms. Steroids both drastically reduce inflammation, and they also suppress your own bodies immune system (immunosuppresant). This will reduce the amount of antibodies available to attack the basal ganglia. So, you have fewer antibodies causing the inflammation, AND a drastic reduction in inflammation already present. Both lead to a tremendous reduction in symptoms sometimes within hours, sometimes within days.
 
I am glad it was the within hours for you .

http://pandasnetwork.org/2013/06/survey/

Hi,
What constitutes "acute onset" or "overnight onset" occasionally gets brought up on these forums.
 
We know not ALL pandas kids have an overnight onset (or the onset is mistaken for the "terrible twos" etc). Per Dr. Latimer (IOCDF conf 2012): "Acute onset kids are easiest ones to diagnose."
 
And parents have wondered what constitutes "acute onset"? Does it truly have to be "overnight"? or can it be something that evolves over weeks/months?
 
Here is an interesting case study(1998, Swedo) on young girl with PANDAS. Her "overnight onset" actually evolved over a course of 2 mo. (started with hypersensitivity to clothing)....evolved to tics a few weeks later, then obsessions/compulsions a few days after that.
 
http://journals.psychiatryonline.org/article.aspx?Volume=155&page=1592&journalID=13
 
So, it seems that "evolving over 2 mo." would still be considered "acute onset"...

Thought I would chime in........While I agree somewhat in part what you guys are saying about Beth not really knowing about violence associated with pandas and not being a medical doctor, I must disagree on other points quite firmly and make the main point I think needs to be made. We need to keep up the pressure on the medical community to start telling the truth and doing their "due diligence" with us on a case by case basis.
 
1) My kiddos all had different reactions to their milk allergy as kids. They are all same blood related----same two parents. 2) Despite this fact-- Their pandas onsets were all very dis-similar in initial onset. 3) In my kids' school(after learning about others kids and teachers issues) and people close our "CIRCLE" of friends and acquaintances., We have multiple people with different diagnoses. Tourettes, Pandas, Immune dysfunction, generalized anxiety disorder, tics, RA in their teacher------all this within the same 12-24 month time frame.
 
While every kids journey with infections, Pandas,PANS,ASD,Tourettes,ADHD, Bi-Polar------you name it, are very dis-similar, as we are as people, very dis-similar yet very similar. We all have an immune system that will respond (or not), be overwhelmed and fail to respond and allow bacterial or viral infections to take root and reek havoc on our body and mind. Having these multiple assaults on the immune system at the same time are not good. In addition to being vaccinated. In addition to worsening diet and the list goes on.........and on.
 
So the point is this-----I think it is as simple as-------Everyone's genetics imply how our immune systems will react to every bacterial and viral infection, everyone's bodies are different. We are, as a culture eating more and more crap. And we are vaccinating a ton more than when I was a kid.
 
That being said........ Look at the Child Mind Institute and read all the causes of any of the disorders. They all say genetic and sometimes environmental. Yes, everything is genetic and we all live in the environment, but using the excuse that only genetics and "environment" cause LITERALLY EVERYTHING is disingenuous at the very least.......There are specific things to look for with the onset of any symptom. Until the medical community "grows a pair" and starts treating people like adults and starts saying what the truth is, we will be stuck and quite frankly sick......both physically and mentally until this change happens. Until people can be educated and understand what their family history is and how and why they have gotten sick, one can then take pro-active approaches. I am not a doctor, nor am I really that smart, but I know the truth when I see it and it is not being told to us by main stream physicians.
 
I have leaned heavily on our DAN Integrative Ped. I like his thorough and practical approach.
1) Look for and debulk infections
2) Eliminate triggers to the immune system
3) Supplement vitamins and minerals lacking in body to promote optimum bodily/immune performance.
4 Implement sick protocol on how to deal with future infections.
 
With three kiddos with Pandas or Pans or Tics emotional lability or bi-polar or whatever you might want to call it, I refuse to stay stupid and not try to intervene. I know what our genetics might be as it regards to mental or auto-immune issues and If I can do something, I am gonna try.
 
Sorry for the rant, but I think Beth is more where I am at......... Keeping up the pressure on the medical community to address biological reasons why mental illness might exist and educate and provide options.

The facts on Grant Accord's situation are highly speculative. Beth is not a medical doctor and has no business weighing in on the cause of his antisocial behavior, especially since all of her information is hearsay. He may or may not have PANDAS and it doesn't really matter. PANDAS symptoms are OCD and tics, not sociopathic behavior. Something else was clearly going on with the kid.
 
Sadly, while Beth and her cronies are busy raising awareness (and promoting their own businesses), they are stigmatizing children who are suffering with PANDAS, Tourettes and OCD. Will this force PANDAS families into the closet? It might. I certainly plan to be more careful about sharing my well behaved, socially and academically successful child's exact diagnosis with school personnel because after reading the media hype, it is probably in his best interest for me to be less forthcoming. I do not want him associated with anyone who would want to blow up a school. His life is hard enough.

You may want to ask if you can get Dr. T's blood work done ahead of time -- that way, you can discuss the results with him at the appointment, rather than going in, getting the lab request, and then having to schedule another appointment to discuss the results.
 
Be forewarned, though, he typically orders about 22 tests. A lot of blood, and a LOT of money, depending on your insurance. You might want to ask about getting pre-approved for the lab work, if you think it's possibly an issue.

Hi -- Our oldest daughter had a similar tic show up, I called it mouth stretching.
 
If it has been there for 3+ weeks I think I would definitely call your PANS treating doctor and inquire about upping the antibiotic. Is he on "full strength" as if he had strep now? If not, you may want to at least try that for four weeks -- and see if there is a change.
 
Also, in my opinion, a trial of advil for a few days may be an idea--if neither of these work then I would be asking for a steroid burst to see if that would help. A 12 year old boy would definitely be bothered by such an obvious tic.
Good luck.

We have a phenomenal pediatrician that is our primary go-to guy named Dr. Friedmeyer. We have also been to Rothman and seen Dr. B in CT for IVIG.
 
I just noticed that you're in JAX, if you're on facebook, there is a Florida group at www.facebook.com/groups/FloridaPANDAS if you're interested. I think there are others from JAX on there as well.