mama4

As all the other 12th graders are busy applying to colleges and writing essays about all the wonderful things they have done in high school, we are trying to solve this medical crisis called PANDAS (PANS). We think DS has been dealing with this for years with ADHD and Anxiety and only last spring has had obvious PANS symptoms-severe OCD and tics. He has been on two courses of abx and is now on a probiotic which seems to be helping. Problem is the executive function and ADHD are still very much there. He can do no independent work. None. He has barely made it through HS and has required lots of scaffolding and doesn't even take care of his basic hygiene needs. His GPA is abysmal and SAT are mediocre, but he is a very bright and curious kid-an intellectual and can discuss anything, has a great long term memory, but, again, zero Exec Function skills. He has isolated himself, has no friends and only wants to be online. Family members are pressuring us to send him off to college. At this point only a local community college would accept him with his record/scores. Even if he does get into a college, it doesn't seem like the right time to send him off. I think because PANS has neuropsychiatric symptoms it is not taken as seriously. They say he needs a change of scenery to become independent. But would you do that to a kid who is battling some physical illness? Are there schools (in NY or nearby NYC) that can work with a kid who is in a PANDAS flare and know how to deal with it? Maybe a postgraduate boarding school program for special needs? Anyone know of any? I've been told to look for a educational consultant. Can someone recommend one in NYC who gets Pandas? I know this depends on the kid and where they are in their treatment/recovery, but I would love some advice. Friends who don't know say I am having a problem letting him go. Little do they know that I would love nothing more than to have a kid who could live independently! But even those who know are pressuring us. I worry the stress from heading off to college will trigger the worst kind of flare and he will be sent home defeated. We are going ahead and applying to some local schools. My plan is to apply to these and then if he is miraculously better next fall, allow him to live in a dorm and take classes. Another option would be a gap year, but what kind of gap year program would be able to handle a Pandas kid? Any advice is greatly appreciated.

http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html?_r=0 This article is from a few years back. It is striking how many kids on the spectrum have Pandas/Pans. Is there something in their genetics which makes them uniquely vulnerable to autoimmune problems? Or are the autoimmune problems causing the autism? Some kids seem to be "cured" of their autism once the Pandas/Pans is treated. Dr. Kenneth Bock suggests that even ADHD is on the spectrum and the spectrum has an autoimmune root. There also seems to be a correlation between maternal illness during pregnancy (especially in the fist two trimesters) and autism. Is there a correlation with Pandas/Pans? The article suggest that countries with parasites don't tend to have autism (or as many autoimmune problems)-related to the microbiome theory. Has anyone used parasites to treat Pandas/Pans? I know some parasites may be the cause of Pandas/Pans, so wondering what others think. Is there any research out there on any of this? Some quotes: "Humans also evolved with plenty of parasites. Dr. Parker and many others think that we’re biologically dependent on the immune suppression provided by these hangers-on and that their removal has left us prone to inflammation." I couldn't find results front this study, but it sounds interesting... "a trial is under way at the Montefiore Medical Center and the Albert Einstein College of Medicine testing a medicalized parasite called Trichuris suis in autistic adults."

Some people have mentioned the Cannabinoid Oil from Bluebird Botanicals (I think). It is perfectly legal. I would be very reluctant to use Cannabis (anything with THC) with Pandas/Pans kids as they can react badly to it (Pandas doc told me this). The oil sounds like a good anti-inflammatory. I am a little afraid to try without a doctor suggesting it...

There are a number of scientific studies which show a positive anti-inflammatory effect of cannabinoid oil in the treatment of autoimmune disease. (Specifically the cannabinoid (CBD) oil which does not contain THC-the stuff that gets you high.) It seems so promising. Are there human trials which show positive effect? Has anyone had success using cannabinoid oil for PANDAS/PANS? Here are just some of the studies I ran across: https://jneuroinflammation.biomedcentral.com/articles/10.1186/s12974-015-0273-0 https://www.ncbi.nlm.nih.gov/pubmed/26876387 https://www.ncbi.nlm.nih.gov/pubmed/20191092 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2828614/ https://www.ncbi.nlm.nih.gov/pubmed/23892791 These are some threads which include personal experiences: http://latitudes.org/forums/index.php?showtopic=22539&hl=cannabis#entry173114 http://latitudes.org/forums/index.php?showtopic=23509 http://latitudes.org/forums/index.php?showtopic=22745

We went through this exact same thing a few years ago. I know how stressful this can be!! What ultimately helped us was Lexapro (I know a lot of Pandas/Pans kids are not helped by this, but it was miraculous for us.) Sounds like he could use a CBT therapist (exposure therapy). It involves exposing oneself to the scary situation in manageable steps. Panic can come from feeling trapped. Ask the school to provide a safe room, like the nurse's office if he needs to regroup. I haven't had any experience with prednisone, but we use Advil and it helps somewhat. You want him to feel the success of being able to go to school (even for an hour-even for a few minutes!). Praise him for the small steps. Then try for more the next day or every few days-the key is small steps. I am not a therapist, but this is what helped us. Get some professional help if you can. If you can't, look online for CBT/exposure therapy. Even though the root cause is not psychological, the CBT can help. I am sending you good thoughts. Let us know how it goes.

I think you are on to something here! As to your question about whether GF products contain folic acid: http://blogs.scientificamerican.com/food-matters/going-gluten-free-things-to-consider-part-1-folate/ "One study took a look at the gluten-free flours, breads, pastas and cold cereals of 16 companies to see how they compared to their gluten-containing counterparts, in terms of folate. Of 37 gluten-free cereal products, 30 contained lower amounts of folate, compared to fortified, gluten-containing cereals. None of the gluten-free bread or pasta products in the study were enriched with folic acid." Is it the lack of gluten or the lack of added folic acid which helps them? I guess you could test this by going GF and then adding GF products with added folic acid. Maybe adding folic acid to everything can harm people with a certain genetic makeup. Maybe part of the increase in autoimmune problems/ADHD etc etc. Has anyone studied this? Not a scientific study, but talks about the folic acid issue: http://mthfrliving.com/health-tips/mthfr-avoid-folic-acid-in-food/

Thanks everyone for the great advice! We ended up using 1 mg of the Ativan and all was ok.

Interesting. Although this is about the preventive effect of probiotics for neuropsychiatric issues, maybe a clue about treatment options. I have also been reading that some probiotics can cause problems for certain people.

It seems like I have read that some kids with Pandas have had adverse reactions to Lorazepam (Ativan). Does anyone have experience with this. DC has taken before and been a little loopy, bit nothing scary. Are kids affected different if they are flaring? I have the same question for Seroquel.

I just ran across this study. Wow! A Possible Link between Early Probiotic Intervention and the risk of Neuropsychiatric Disorders Later in Childhood: A Randomized Trial http://www.nutri-linkltd.co.uk/2015/07/31/a-possible-link-between-early-probiotic-intervention-and-the-risk-of-neuropsychiatric-disorders-later-in-childhood-a-randomized-trial/

I think there are probiotic suppositories that might work as well. I am going to do a little research. I would like to know more about genetic markers. Seems like we have a lot of people who could give an anonymous sample on boards like these. I know there is a lot of complexities re: privacy issues, scientific rigor, but I imagine a even a biology grad student could collect and crunch numbers within a couple of months. I would like to see a survey of symptoms and treatments tried as well. There is just a wealth of info on these boards-is someone analyzing this?

I just posted a question on probiotic enemas and whether anyone has tried or if there is research on this. There was an article on Educate Your Immune System in the NYX that talks about the micro biome and autoimmune connection. http://latitudes.org/forums/index.php?showtopic=23342

I have been looking as well to no avail. I have an email into Dr. Leckman.

Did anyone else read the NYX article from last Sunday on the microbiome and autoimmune disorders: Educate Your Immune System? It talks a lot about autoimmune disorders. I know my DC was on lots of antibiotics as a baby...Perhaps a connection? http://www.nytimes.com/2016/06/05/opinion/sunday/educate-your-immune-system.html Has anyone tried a probiotic enema? It seems like one of those "couldn't hurt to try" (well maybe a bit uncomfortable...). Does anyone else know of formal research (or anecdotal reports) on this? Here is another post regarding probiotic treatment. I guess a lot of the oral probiotics don't get past the digestive system, so the direct route may work better. At least it is easier than a fecal transplant. http://latitudes.org/forums/index.php?showtopic=23342

Hi all, I am new to this board. We are suspecting DC has Pandas or PANS. I would love any input. Here is a brief history: two years of anxiety for DC starting at age 14. After a year of CBT, then extreme anxiety with agoraphobia, started on SSRIs-helped tremendously, but isolated etc.-able to go to school, but just wants to be alone. This past month, sibling came down with strep, the day after DC developed extreme OCD lasted a few days and seemed to dissipate. Dr. requested strep test-all titers were negative!!! Zero. He has had a mystery rash on body for years. Maybe strep? Last week, sibling came down with strep again, DC had had adderrall the day after and then same symptoms, only a little more extreme and angry and very agitated-very scary, again dissipated after a day. (Also an HPV booster vax in there somewhere). Psych agreed we needed pandas expert-we have appt now. Now different sib is showing tics (but again no active strep). DC has Low Vit D. Here are a couple of questions: 1) I have read that diagnosis requires sudden onset. DC has this with these two episodes, but I am wondering about the anxiety onset from a few years ago now. Could there be a connection? DC also has ADHD, what were now realize were complex tics (that wax and wane) and Executive Function issues and all kinds of other odd behaviors etc. since DC was 3. We parents and experts have had general feeling DC does not fit any particular diagnosis- a mystery. 2)Is it possible the body has been reacting in a certain way for years and the extreme reactions are now just a more severe exacerbation? I think I have read about micro episodes or something like that. Could this explain some of the previous issues? I guess not diagnosable as PANDAS, but similar biological mechanism?DC is a bit old for Dx, but maybe going on for years? 3)Everything seems worse at end of year-in Spring. Exposure to viruses/bacteria, maybe connected to low Vit D this time of year? 4)DC takes Ativan or Lorazepam to fly. If DC is not in the middle of an exacerbation, has anyone had problems with this med? 5)Why are titers for strep negative, but it seems clear to me and psych. that the strep exposure triggered an exacerbation? 5)Would love to hear success stories. Anyone go on to not have any more exacerbations once treated? 6)Has anyone done formal research or informal surveys of parents on boards like these in regards to medical history/symptoms/connections? Thank you!!!