EAMom

Does anybody have any insights on this? PANDAS dd first got her period in 6th grade (11.5 years). She had pretty normal cycles until the spring of 8th grade (March) where her period came but was very light. Now, in the past several months, her period has stopped altogether. We saw her pediatrician in July. Ped wasn't concerned but did run a few blood tests (I'd have to look up what they were) which were normal. But since then, the problem has gotten worse but not better. She did have PANDAS anorexia in 2nd grade. At that point she went from the 25th percentile of weight (50th percentile for height) to totally off the growth chart (down to about 43 pounds.) Body weight wise she is normal now (has been since 3rd grade), about 105 pounds and 5 foot 1/2 inch. If you look at her, you wouldn't say she was too skinny, certainly not at all unhealthy looking. Diet wise, I can't say it's the best, she does crave a lot of processed carbs. She also exercises a lot (is a fencer). She doesn't look at all anorexic or unhealthy however and she seems to have plenty of energy. PANDAS-wise, she's doing pretty well. She has some low grade symptoms (weight, food related unfortunately) but her symptoms seem stable or better vs 3-4 years ago. She was on a low dose of Prozac until 7th grade which she doesn't need anymore. Now she only takes Azithromycin 500mg 2-3x weekly. She does have some low grade OCD, but not debilitating. Unfortunately, lots of her OCD that is left is food/weight related. I know she checks her weight (although now we are getting into "normal' teenage girl stuff). She has a strange doorway OCD which is PANDAS/weight related as well. But to the average person, she is a quite normal. I made another appointment this Thursday with her ped. From what I've been reading, it's not uncommon for teens to be irregular (but I was always regular). One thing I'm worried about the female athlete triad and osteoporosis (my mom has severe osteoporosis from other causes). Then again, she's not super skinny, not like some of those long distance runners w/no body fat. She just looks quite healthy to me actually, so I don't even know if that is the problem, but I am concerned. "Amenorrhea: Loss of menstrual periods may signal a change in your body's intricate and complicated hormone system. Hormone imbalance from underfueling your body can result in lowered estrogen production. There are also other causes of lowered estrogen levels. A diminished estrogen level can have many effects; the most immediately apparent one can be bone loss. Amenorrhea can often go unreported to medical providers because of the common belief it is "just part of the training effect." We do know that the bone loss that occurs as a result of this is NOT "just part of the training effect" and can start to occur after just a few months with no period. Click for more information on amenorrhea. Osteoporosis: Loss of bone, especially if you are an athlete, can be an unfortunate setup for an injury. Stress fractures can sideline sports activity and be slow to repair if you are underfueled. Repeated stress fractures and unexplained injuries should be a red flag to further evaluate your eating and exercise patterns. Bone loss that occurs because of amenorrhea can be permanent; osteoporosis is not just a disease grandmothers get!" http://www.brown.edu/Student_Services/Health_Services/Health_Education/nutrition_&_eating_concerns/eating_concerns/female_athlete_triad.php Does anyone have any insights or tips? Things to ask my ped, what type of doctor to follow up with if ped isn't helpful. (Frankly, I don't think this is an area of expertise for my ped, but I will see her to hopefully get a referral). Also, could this be tied into PANDAS somehow?

Fatigue is a very common symptom of Lyme and certain other tick borne diseases. My friend's dd who has Lyme/Babesia/Mycoplasma has severe fatigue. Also certain viruses can cause fatigue. I wouldn't expect fatigue to be a typical strep only PANDAS symptom. However, at the CA Symposium Swedo said that when they've done sleep studies on PANDAS kids they have a REM behavior disorder. Also, I think a sleep study is good when there is fatigue to rule out sleep apnea (also might be an indication for T/A). There are other treatments for sleep apnea if he doesn't have his tonsils.

My dd took 250mg/day when she was 43 pounds.

How much does he weigh? 150mg/day Azith still sounds low to me. I would also swab family members in case somebody is an asymptomatic carrier.

Norcalmom-- Swedo mentioned that at the CA PANDAS symposium in Burlingame (last April). I believe what she meant was, "look for perianal strep if your PANDAS kid isn't getting better". Maybe you would presume that perianal strep would just get better on the same oral antibiotics that is used to treat strep throat? My non PANDAS dd had a sometimes itchy around her rectum which didn't go away with oral antibiotics (she had been on several times, and the rash was constant). Ped said it was yeast, but it didn't go away with anti-yeast cream (which the ped recommended). When I used a strong antibiotic ointment, it did go away, so I presume it was perianal strep, not yeast. Anyway, not all antibiotics penetrate to the skin well, so that might be a reason certain oral antibiotics might not clear perianal strep.

I'm glad he is doing better. Was he checked for immune deficiency (given that he gets pneumonia so often). I also wonder about an underlying tick borne disease (eg Lyme or a co-infection), or other chronic infections (strep, or viruses)? Also, Lyme tends to "come out" around puberty due to hormonal changes and the North East is a real hot spot for Lyme. I am just concerned that symptomatic treatment (psych drugs) will give you temporary gains, until the next insult to his immune system. Be careful. A resources your doctors might find useful if your son does relapse: https://www.pandasppn.org/ You can also post and ask about doctors. I know there are several PANDAS/PANS friendly experts in the your part of the country (although maybe not in your state).

Interesting! Are you going to get an injection every few weeks?

I guess they could actually do a study and "test" whether bipolar kids who don't have lab evidence of a viral infection also benefit from Valtrex as a "mood stabilizer". The fact that both he (and his sister) had lab evidence of a viral infection, convinces me that this was PANS (or some sort of infection triggered neuropsych syndrome, until proven otherwise), not that the Valtrex was acting as a mood stabilizer. However, we know that antibiotics can have "other properties" such as immune modulating and anti-inflammatory so I do think it's within the realm of possibility that anti-virals also have "other properties" as well.

"But definitely something is different here. definitely. If it was JUST this virus, then why aren't all the children (thousands of them) experiencing paralysis? I pray answers are found." Genetic variations/susceptibility, co-infections/hidden infections, environmental toxins, stress, nutritional status, other factors probably all play a role. It's like asking why only some people that get vaccines get Guillaine Barre and others don't. http://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/basics/definition/con-20025832

I wonder if the patient's older sister had Lyme underlying? Although she also had a dramatic response to just the Valtrex. "During the course of his treatment, the patient’s older sister had developed CFS, characterized by fatigue, excessive sleep, mental "fogging", low motivation, muscle aches, and low mood. An 8 week trial of escitalopram at 20 mg/day made no significant change in her symptoms. Laboratory studies showed elevated viral immunoglobulin titers and low natural killer cell count. Within 6 weeks of starting valacyclovir (Valtrex, GlaxoSmithKline, Philadelphia) therapy (500 mg BID for 2 weeks, then 1000 mg BID), her symptoms began to abate. She was able to return to full-time school and part-time work in three months. Since the purported viral agent responsible for CFS, as well as its mechanism of transmission, is unknown, the possibility of horizontal transmission within the family was considered. On laboratory testing, the index patient indeed showed results suggestive of CFS, including low CD56 natural killer cell (NK) count [25,26], as his sister had. A trial of valacyclovir was therefore considered. After explaining the risks and side effects of valacyclovir, as well as the speculative nature of the treatment, the patient assented and the parents consented to a trial of valacyclovir starting at 500 mg BID. Within 6 weeks, noticeable improvement was seen in the patient’s mood and behavior. When the valacyclovir dose was increased to 1000 mg BID, the patient experienced a dramatic improvement in his symptoms. His mood and behavior dramatically improved. He became much more social, seeking the company of his family, joking, and conversing. As the parents describe, "It was like an awakening…now he is quick to apologize when he’s been disrespectful, rude, or demanding…he developed a constant hunger for knowledge and a desire to understand everything and everyone around him". He became kind, helpful with household activities, and courteous. The patient, for the first time, greeted his psychiatrist warmly, rather than with surly growls or hiding under the hood of his jacket."

Yup, any kid who suddenly becomes "bipolar" after a vaccine is highly suspect for PANDAS/PANS!

This is why I think ALL kids with a bipolar diagnosis should 1) be screened for infections 2) have a Cunningham Test Ugh

Also, they don't realize that subsequent exacerbations can be caused by anything which stimulates the immune system, not just strep.

Yes, I agree maryaw...also, the "strep test" was often just an ASO...no cultures or other titers. And doctors don't know to look for rising titers or that titers don't rise in many kids. Or the ASO gets drawn at the wrong time.

I don't think the authors ever realized they were dealing with PANS/Pitand, even after writing the article. It is also sad that this child suffered for so many years. http://omicsgroup.org/journals/is-valacyclovir-a-mood-stabilizer-2165-7890.1000118.pdf

This report says 250mg twice daily (although it seems odd that body size wouldn't matter?) for prophylaxis. Just bear in mind, most PANDAS kids don't find low dose pen to be very helpful (esp. if strep is present, and we're not just worried about preventing infection). My feeling is that PANDAS kids don't have a "normal" immune system vs strep so the low dose prophylaxis may not work well for them (or they have a current infection lurking that needs higher doses). http://www.who.int/selection_medicines/committees/subcommittee/2/RheumaticFever_review.pdf You may also be interested in this on Penicillin and Amoxicillin failure in strep throat http://www.urmc.rochester.edu/news/story/index.cfm?id=981 Are you East or West Coast? There are some Azith resistant strains of strep in the East, so Azith does tend to be more popular in the West.

Perianal strep can also cause itching and can be a cause of treatment refractory PANDAS.

I recently started taking 400mg of Magnesium Glycinate at bedtime. No weird side effects. I think (haven't been tracking long enough to know for sure) it's helping prevent my morning (I sometimes wake up with them) headaches. Also, I don't tend to wake up in the middle of the night when I take the Magnesium Glycinate. Magnesium glycinate is supposed to be better absorbed than some of the other forms. It might also be good vs tics/twitches and is supposed to be good for bone health. Be sure to take Magnesium away from antibiotics (at least 2 hours). Also, some drugs (like antibiotics) can deplete Magnesium.

Dh reminded me that this parent told him you can get antibiotics w/out a prescription in Dubai. Is that true? That would make things easier.

Hi, Some thoughts: 1) Per Swedo Penicillin must be given at least 2x daily (it has a short half-life) 2) I would be worried about Lyme/tick borne infections with the headache and joint pains. There are lots of false negatives with Lyme tests. 3) I am assuming you are an adult? How old are you? I wonder about tonsillectomy, here's a thread http://latitudes.org/forums/index.php?showtopic=16422&page=2 4) It sounds like pen doesn't agree with you. How about Azithromycin?

I did meet a PANDAS parent from Dubai 2-3 years ago, at the Chicago IOCDF conference. I think she was American and I suspect they traveled to the US for treatment, not sure. I don't remember her name. (Okay, that wasn't really helpful, was it.) I second the recommendation for PPN. Also, Dr. Trifiletti (NJ) does phone consults.

Hi, I skimmed the responses. I will add: 1) Here's a brand new movie on GMOs, vaccines, big pharma http://www.boughtmovie.com/ Stephanie Seneff (MIT, links autism with vaccines/GMOs etc) is in it. 2) I also strongly agree about avoiding Tylenol. Ibuprofen is okay. http://www.foodconsumer.org/newsite/Non-food/Drug/tylenol_linked_to_increased_risk_of_autism_0702101053.html 3) good article from Dr. Bob Sears about the CDC whistleblower http://tacanowblog.com/2014/08/29/cdc-vaccine-autism-research-explosive-new-statement-from-a-lead-researcher/ 4) good video on Andrew Wakefield (I honestly didn't know much about him before, just that he was "discredited" ) https://www.youtube.com/watch?v=Ra0QtTUuFIc 5) Silent Epidemic (Gary Null documentary on vaccines) http://www.youtube.com/watch?v=lJGyN3gCsBg&feature=youtu.be 6) Article on a baboon study re pertussis vaccine (explains why vaccinating your 7th grader isn't going to protect your friend's baby from contracting the disease--no herd immunity): http://www.nytimes.com/2013/11/26/health/study-finds-vaccinated-baboons-can-still-carry-whooping-cough.html "Using baboons, the researchers found that recently vaccinated animals continued to carry the infection in their throats. Even though those baboons did not get sick from it, they spread the infection to others that were not vaccinated. “When you’re newly vaccinated you are an asymptomatic carrier, which is good for you, but not for the population,” said Tod J. Merkel, the lead author of the study, who is a researcher in the Office of Vaccines Research and Review in the Food and Drug Administration." 7) interview with Dr. Brian Hooker (this was just before the CDC whistleblower went public) http://www.voiceamerica.com/episode/79945/dr-brian-hooker-on-mmr-study-statistics-with-marcella-piper-terry-and-candyce-estave You can download on iTunes and listen on the go

"don't support a PANDAS diagnosis, but will treat the symptoms" Hmmm...that sounds like they will use psych drugs and anti-tic drugs. Maybe ask, what do they treat the symptoms with?

@pr40 that is a good question. I always wonder what would have happened if my dd had not had her tooth extractions...if her symptoms would have ramped up quickly enough for her to become full-blown (anorexia, bipolar behavior, severe OCD). Before the extractions (but after her "fever" which we later figured out was strep onset), she had become "difficult" with lots of tantrums, some food restriction...I always wonder if we would have ever diagnosed her if things hadn't happened the way they did, if she would have progressed to the same level of severity (but more slowly) or if she would have been stuck (and undiagnosed) with mid-grade symptoms.

http://www.jeffhaysfilms.com/bought-the-movie/ "The Beginning Vaccines. GMOs. Big Pharma. Three big, BIG, okay… HUGE topics in one film. Why? Why not 3 films, why put all this in one movie? Great question, 2 answers. First and most importantly: We need to band together. We need a mainstream film, not another radical movie that only interests the “already converted”. Over 5 million people supported Prop 37 in CA. Reportedly, over 2 million worldwide marched against Monsanto in a global protest. There are thousands of actively involved parents focused on vaccine safety truth. Our Assignment We’re going to use multiple groups to make sure the critical messages in this film “cross the chasm” and makes it into mainstream. We’ve already allied with some of the most successful voices in these areas. We can’t afford to stay “silo’ed”, focused on only one key issue. These causes are directly related, and we need to harness all of us to draw close to the level of noise put out by the medical-industrial conglomerate. Now, I just have to make a great, credible, mind-blowing film. I can do that. That brings us to the second point. Combining all three topics makes wonderful storytelling, because it’s the same villain! You peel back the layers and see what’s really driving our industrialized food, our insane vaccine expansion, and our love affair with pharmaceuticals- it’s the same villain. I can’t wait to show you what we’ve started… So there it is. We’re going to tackle the most important, the most controversial, emotional, and bitterly debated topics of a young families life. And we’re going to make some noise." another link to trailer