MaryAngela

my son uses Boswellia Extract by NOW as an anti-inflammatory with great success
It's a combo of Boswellia and turmeric/curcumin....potent anti-inflammatory action
 
Boswellia itself has also been found helpful for OCD
 
also, as an FYI for anyone using ibuprofen...CVS Pharmacy now makes their own brand on without that nasty added dye!

Ugh. Big hugs. I'm so sorry, I really feel you.   I was where you are just last month, emailing and calling our doctor in tears asking if this is how our lives will be forever now. I still wake at all hours of the night with a hundred questions and thoughts etc, waiting for the night time wake ups of screaming etc.  It feels neverending. PTSD for parents with PANS/PANDAS is SO real.  The caregivers need help too.  This is a lonely wild ride.  If you're able to find a support group I know a lot of parents find just venting to people who understand therapeutic. Xxo

I completely understand with needing to hear from others. We tried so many supplements over the years. We also did neurofeedback (muscle testing) and cognitive behaviour therapy with a child psychologist. Looking back the most important things that helped were - clean diet (real food not processed) with low oxalate foods, tonsil and adenoid removal, and learning how to "fight" his ocd and "worry brain" with common sense techniques that were given to us by the psychologist. Those techniques continue to be useful to this day, but only when he's not in a flare. When in flare it's too hard - his brain is inflammed and only abx will work. Tamar Chansky's books are helpful in understanding the talk-back techniques. I would also say that learning to re-wire his brain with music lessons also helped. People seem to look at me sideways when I say that but I truly believe it made and continues to make a difference. Another book I recommend is: The Brain's Way of Changing by Norman Doidge. It's been a long journey for us and we understand that our son will always have tics and worry brain issues to some degree, but they can be managed and he is living a great life. He excels at school, has many friends, participates in sports, camps, etc and is very happy about his life. 

We did not see dramatic improvement for my DS 14, until he was put on the encephalitis protocol for IVIG, which is monthly HD.  He has had 5 so far. This was started after limited success with weekly LD IVIG. He has shown lasting improvement with each treatment.  Tics gone, OCD 90% gone.  He still has anxiety, focus issues and sound sensitivity.  We are hoping for some relief from those symptoms with future treatments.  

@bws1565
My DS now 15 had PANS symptoms since he was an infant.  He didn’t have MMR until he was 9 or 10 years old.  I believe he had a reaction to DTaP at 6 months old, though.  

My DS responded very well to Clarithromycin after showing high Mycoplasma titers.  It’s common for kids to get yeast issues from antibiotics even while taking probiotics, so it’s important they have the probiotic 2 or 3 times a day.  Be sure to space the probiotic at least 2 hours away from antibiotic.  I’ve used Gutpro (expensive) and Jarrow (reasonable).  I wouldn’t skimp and use a generic grocery store or drug store brand.  Yeast can cause issues itself.  I also give my DS a yeast control supplement, especially while on abx, and for a few weeks after.  We’ve used Candicid Forte and OrthoFlora yeast support (Protocol for Life Balance).  I’m sure Whole Foods also sells yeast control supplements.  
I prayer that your daughter finally  gets some relief from the abx.  Keep us posted.  

We found 3 doctors in Illinois that immediately (after seeing bloodwork) recognized this as PANDAS and/or Autoimmune Encephalitis).  Unfortunately none accepted DS medical coverage. The first said that if we could not get insurance to pay for IVIG, we needed to “beg, borrow or steal” to get it, or he would be institutionalized.  By this time we had already gone through our savings (including retirement savings) due to unpaid time off and unpaid medical expenses.  We used crowd funding to pay for first IVIG.  We saw immediate improvement, but it was not lasting.  We stopped seeing first two PANDAS MDs, mostly due to location, cost and accessibility.  Third MD ordered Cunningham Panel and was able to get IVIG covered under AE.  Although this doctor does not take DS insurance, IVIG is considered a prescription and it is covered.  I sometimes see on these posts that a child may only need 1 or 2 IVIGs.  This was not the case for my DS (possibly because the illness went untreated for so many years).  For your daughter, 1 or 2 may work.  Read the book “Saving Sammy”.  Beth Maloney’s son was cured with antibiotics alone, but again his illness went untreated for maybe a year or so.  I think that’s what makes the difference.  
I believe it’s important to find a doctor experienced in PANDAS/PANS, not just someone who is open to the possibility and willing to give you antibiotics for a period of time.  

I’m sorry your daughter is still suffering and hasn’t seen much relief from the supplements.  Her symptoms sound like autoimmune encephalitis (AE).  This is the diagnosis that was used to get IVIG approved for my son from late 2017 thru present.  In 2016, a rheumatologist (who had limited experience treating PANDAS kids) prescribed a high dose of Augmentin for 30 days, which worked like magic.  Unfortunately his symptoms returned when she lowered the dose.  IVIG was not covered for PANDAS, and she refused to order under AE, because he was not experiencing seizures.  From what I read about Susannah Calahan (Brain on Fire book/movie), she was lucky to experience seizures, because that’s what led her to the doctor that diagnosed her with encephalitis.  Apparently, some people (including my DS) have encephalitis without experiencing seizures.  So his rheumatologist was wrong.  

I know that “inexpensive” supplements can add up, but we also used 5-HTP for our DS.  It was recommended by an otherwise unhelpful psychiatrist.  This was when DS was at crisis level.  Need to use on empty stomach.  I was able to get DS to and from bloodwork appointment on public transportation because of the 5-HTP.  I don’t recall why we stopped using it.  This was in 2016.  I believed we stopped a couple months later when we finally found a doctor to prescribe high dose of Augmentin.  
What form is your Oil of Oregano?  Again, we saw improvement, but used a high dose.  15 drops of undiluted 5x a day (mixed with orange juice). 
Something else we use as antibacterial and anti inflammatory is tea made from ginger root.  I grate a hunk of ginger root and steep it in boiling water, then strain.  It’s pretty spicy, but we like it.  We’ve been chilling it and using as an alternative to unsweetened iced tea. 
At the risk of bombarding you with information, those were a few things I thought of.  

Yes we just used a doctor thst didnt use my insurance...he just ran strep teiter thats it. Called my kid crazy and left.
Im not totally against phych drugs but thats what drs immediately put her on because they dont know whats wrong. Frustrating!!!!! 
Ty so much. I know we will get thru but being in the storm is always rough

My heart breaks for you and your family.  Since your DD’s onset is recent, there should be so much hope...if only the doctor’s weren’t working against you.  
What bloodwork did they run?  Did they check for Mycoplasma Pneumonia?  
We spent years trying to find someone to evaluate our DS for PANDAS/PANS.  Ultimately we used doctors that don’t accept our coverage or any coverage.  

After suffering with OCD and intrusive thoughts for over 3 1/2 years, we finally were able to get a rheumatologist to prescribe a high dose of Augmentin for 30 days for our DS in 2016. During the 3 1/2 years we tried unsuccessfully to treat his symptoms with pharmaceutical meds.  The doctor let us start the abx before his bloodwork came back, which ultimately showed normal Strep titers.  She said we may continue the abx for the 30 days if we chose to.  He had no response for the first ten days, but on day 11 or so his symptoms began to rapidly improve.  Again, his bloodwork had come back normal.  I think if the infection was too far in the past it doesn’t show up on the bloodwork, although the misfired antibodies continue to attack the brain. The Cunningham Panel is what got the PANS diagnosis for my DS.  
With PANS, there are 3 things to address: the infection, the inflammation and the immune response.  
 

I know.  It is so overwhelming.  Let me know if you start the Oil of Oregano.  If I recall we saw an improvement within a week with a high dose of Oil of Wild Oregano.  

My DS’s first major sudden onset of OCD at age 8, happened within 48 hours of dental work.  The conventional psychiatrist he first saw said it was possibly triggered by the Nitrous Oxide.  Apparently it can deplete vitamin B6 or B12 (can’t remember which). She threw that theory out the window after his labs showed no B Vitamin deficiencies.  
Years later, another PANDAS mom informed me that dental work is a common trigger for PANS/PANDAS.  It can unleash hidden bacteria.  Now my DS starts an antibiotic a few days before dental appointment (even cleaning), and continues for 2 weeks after appointment.  
I’ve been skipping the fluoride treatments for him.  The dentist disagrees, but I don’t want to take any chances.  

Let me know how the CBD oil works.  There is also a supplement called NAC that we had some success with.  There was a Yale clinical trial for OCD with NAC. You may want to ask her new doctor about it.  The dose for the clinical trial was 900mg 3x a day.  My son stopped taking it a few months ago, because he was tired of taking supplements, but recently said he wants to start it up again.  It’s easy to find...Whole Foods, etc.  

I’m so sorry she is going through this.  My DS was at crisis level OCD/intrusive thoughts from late 2015 to late 2017.  We had never felt so desperate in our lives.  He is about 85% better, but getting monthly high dose (HD) IVIG treatments.  

Welcome to the forum, but sorry your family has been forced to deal with PANDAS/PANs.
 
As you do some reading here, you'll find that our stories, including treatment protocols, can vary widely. What does seem to be a thru-line to some extent, however, are commonalities among behaviors that we see in our kids when they're sick. There's some commonality in response to various medications and supplements, too, but not always. Time frames vary dramatically, also; I have my suspicions that this variance has to do with age at diagnosis, length of time the child was suffering due to PANDAS/PANs but went incorrectly diagnosed prior to diagnosis and treatment, and similar temporal differences.
 
My DS was diagnosed with "regular OCD" at age 6 and went through a second "flare" or exacerbation at about 7.5 years. We inquired about PANDAS with ped, therapist, and ultimately a psych as well but were told it wasn't "real," and since our DS was classically asymptomatic for strep, we couldn't demonstrate a link, either. So we treated with therapy and finally an SSRI (Lexapro) until he turned 12.
 
At 12, he completely flipped out. Went from being fully functional, funny, social, academically gifted, to a basket case. Couldn't read, sleep, play, eat. Psych kept switching up psych meds . . . different doses, different formulas. Nothing worked, and he just got worse. "Saving Sammy" and subsequent email conversations with its author, Beth Maloney, turned our attention back to PANDAS/PANS, particularly since Sammy was classically asymptomatic also. Ultimately, we were able to prove some atypical immune response through blood tests, and our ped was, gratefully, willing to give us an abx trial. Based on Sammy's protocol and our DS's similarity to Sammy in terms of age, behavior set, etc., we began with Augmentin XR, 1,000 mg., twice daily.
 
When I found this forum and connected with a number of other families and great minds who were deep into the latest research, helping their own families and others, too, we began to explore other supplements that could assist DS with respect to immune balance and behavior; we also found a PANDAS-literate psych and reduced his SSRI dose and changed the med, as well, to Zoloft. We looked into IVIG but did not pursue it for a number of reasons, not the least of which was DS was so positively responsive to abx, we didn't entirely see the need for another, more expensive intervention.
 
DS was on the XR for nearly 2 years; we slowly weaned him off the last 4 months or so. He also continued on Zoloft and certain supplements we found seemed to help him on an ongoing basis: NAC, B6, zinc, quercitin, omegas and magnesium. We also kept him on probiotics (sach b. and a mixed flora) during the abx and for quite some time afterward. ERP therapy was also his constant companion, twice each week for the first year or so following his PANDAS dx, and then edging off slowly as we saw him gaining more traction over the OCD, and as we became more and more literate as parents in terms of helping him beat back the OCD at home, rather than accommodating it.
 
He's now 17 and I consider him a success story. He can now maintain his health -- mental and physical -- even when exposed to strep. He's been off abx for nearly 3 years, though he continues on a low-dose SSRI. I've found a compounding vitamin supplier and have been able to order a custom blend multivitamin for him that contains the things we know help, and leaves out the components we've seen can have negative impacts for him. He is back to his functional self -- funny, fun, bright, in AP and honors classes in his senior year in high school, has friends, etc. He still contends with some OCD; whether or not that's because he was dealing with that for 6 years before we were successful in getting PANDAS intervention I can't say for sure, but that's what I suspect. His brain was being wired those 6 years, so undoing that will likely continue to take some time.
 
I wish you all the best, and from our experience I will offer two key perspectives: 1) time is an important component in the healing process; and 2) don't ever give up!

You are correct with this observation.  I never mention my vaccine position to anyone.  Once, I have had a local medical center confront me about my not vaccinating, but they were very respectful of my decision to my surprise.
The only place where I adamantly refused to get a vaccine with my mouth wide open, was prenatally.  Otherwise I always say, "not at this time, thanks."

I am so sorry you are going through a crisis period.  Here’s what I can tell you from my experience...Two years ago, we finally found an MD willing to prescribe abx for my DS (now 13). His case was severe. 10 days into the 30-day high dose of Augmentin, be began to rapidly improve. It was nothing short of a miracle.  Unfortunately, there was a 10-day gap between the 30-day high dose and the prophylactic dose, and he regressed, and were never able to recapture the success of the first abx.  That summer my DS developed a yeast infection, and his symptoms escalated.  He was out of his mind...hallucinations, new tics, aggression.  For the past two years we have treated him for yeast.  We use Gutpro, Saccharomyces Boulardii, and Candicid Forte.  We have also tried rx yeast treatments (Nystatin).  Had a scary experience with Diflucan, though.  
Currently my DS is not on abx.  When he takes them, it’s always a matter of time before it impacts his liver function, and has to go off.  He’s using an herbal antiviral, and he has had many IVIG treatments the past 15 months.  

Wombat140–
I am new to this forum, but have read  a few of your posts. Your suffering reminds me of my son’s suffering.  My son is rarely open to talking about his compulsions, but after dealing with his OCD for years, I’ve determined that all of his rages were due to his OCD being “blown”.  Telling him to quiet down only makes the situation worse.  The consequence does not matter, even if it involves a neighbor calling the police.  Part of my son’s OCD was that he would need me or my husband to do something, but his OCD would not allow him to tell us what it was.  For example, when triggered, he would need to change his clothes, then leave our apartment building.  I would need to hold the door open in a certain way, but he couldn’t tell me how.  He would  change his clothes and go in and out of the building hundreds of times a day.  One night he repeated this compulsion continously from 7 pm until 7am. He would change his clothes and I would walk around the block with him.  It didn’t matter that it was in the middle of winter.  I truly didn’t think we would live through this.  My son will tell me that he is not being manipulative.  The way I see it is that his OCD is manipulating him, which sometimes involves needing others to behave a certain way. He is not choosing to have these thoughts.  My son is 80-90% better, since IVIG treatments, which started this past November.  I hope you find relief soon.  

I found the book, “The Explosive Child” extremely helpful.  I would recommend that both you and your wife read it.  It discusses collaborative problem solving, but also that sometimes “giving in” to the child is the best option at the moment.  It is not worth the child or someone else getting hurt.  
Unrelated to the book, my son has an OCD issue about being told “no”.  He explains that is has nothing to do with getting his way.  I think when he asks for something and he’s told “no”, it makes him feel “bad” or “greedy”.   I need to be careful how I word my response.  For example if he asks for ice cream before bed, instead of saying, “You’ve had enough ice cream today and it’s too close to bedtime”, I would say, “You may have ice cream after lunch tomorrow”.  It took me years to figure out that most of his rages were due to someone interfering with a compulsion.  

My son’s case was severe.  We were in a very dark place multiple times, sometimes lasting over a year at a time.  Looking back, I don’t know how we survived.  What kept us going were those times of reprieve, like you experienced after your tonsillectomy...showing that there is an answer out there...but just needing to figure out how to sustain it.  My son responded well to tonsillectomy, antibiotics, NAC, IVIG, but nothing with complete and lasting results.  He is now receiving monthly HD IVIG at least until the end of the year.  His tics have been gone for the most part for over a year.  His OCD improved somewhat after 1st IVIG, but it wasn’t lasting (that is why I recommended testing for Mycoplasma Pneumonia first). His OCD is about 85-90% improved, but he still has major sensitivity to sound and odors, still has anxiety and focus issues.  He just started an herbal antiviral and an herbal antibacterial.  We plan on trying either the Paleo or Ketogenic diet soon.  Watch the documentary “The Magic Pill” (currently on Netflix). It is amazing the impact diet has on physical and mental health.  Also, Joe Rogan has a regular guest on his podcast, Chris Kresser. He promotes the Paleo diet and once used a specific example of a child with PANDAS symptoms (although he didn’t call it PANDAS) that was cured using the Paleo diet.  

Thanks, @maryangela . Just spoke w/DS18's PANS provider. Confirmed that b/c he was sick going into this latest HD IVIg, it will take longer for everything to calm down. We'll be doing HD every 3 months through November 2019. Good to hear about your DS13. We were also 80-90% improved January-March. Trying to get this current infection under control now. 

My DS 13 received 16 weekly LD (1/4 of HD) starting last November.  It was extremely frustrating, because he would flare for 3-4 days, then start getting better, but would flare each time he had the treatment.  In May of 2018 he had a HD.  Huge improvement, which lasted about 6 weeks, then he began to decline.  Had another HD two weeks ago. It was like magic. Immediate improvement.  He will now receive monthly HD until the end of this year.  Apparently, this is AE protocol.  Could take 18 months.  He is about 80% improved.  His symptoms were severe.  

My son does not have Lyme, and the Ozone helped somewhat. The Cunningham Panel has become the standard lab used to show there is an autoimmune component to OCD and tic symptoms.  Based on the results of the Cunningham Panel, my son’s doctor is treating him for autoimmune encephalitis. Do a Google search on Cunningham Panel or Cunningham Panel PANDAS.  You can probably search within this forum also.