dasu

Its way over my head but it may be possible that its both ways. One item of discussion with our new ND is Th1 Th2 balance. Autoimmune have an overactive Th1. He has talked about trying to introduce meds to balance.

PANDAS is a devastating disease on kids and parents. We have been in similar straights barely holding down a job, paying bills, keeping home and body clean and cooking. There were months we hardly left the house, so yes its isolating. Between not being able to do typical activities, peoples judgements and protocols for isolation from sick kids, everyone loses friends. I think its good you are open. You know who your friends arent. It is sad that it is so hard to find and make friends, we - the PANDAS community and really everyone - needs to do a better job of coming together, educating and supporting. There are a few PANDAS families we know who have gone through the illness and recovered but refuse to talk about it, they want to leave the bad memories behind. I can understand on one level, but am super frustrated. Are there any approachable and open homeschooling moms? Most of them are busy crafting the perfect home and their perfect kids. Kids and behavior (yes thats our kids) that gets in the way get the cold shoulder. They may say they are understanding but really don't care, they mainly want to post pictures on facebook of their wonderful adventures, their kids artwork, their music etc.

My son has had a number of tics observed through the years of PANDAS. Spitting, echolalia, swallowing, blurting things out. He has also had most of the other PANDAS symptoms - some OCD, ADHD, ODD, anger/violent behavior. There is one symptom that I cannot understand though. He will often try to look at his reflection while talking (he talks a LOT). We dont notice any other time that he looks at his reflection, only when talking. That could be a mirror in our house, the rear view mirror of a car, a window etc. We have to remind him "talk to us not your reflection" So what is this behavior classified as? Is it a tic? Is he obsessed with himself? Is he just trying to improve the way looks when he talks?

CBD has a grassy taste. Its oily, obviously but clears the palate quickly. My daughter takes 15 drops 2x day. She doesnt like the taste of CBD but has no trouble taking it. We never had to mask the taste by mixing just give a couple gummies as chasers. We tried several times with my son. He does not appear to do well with CBD and counter-intuitively he gets more ADHD and ODD.

Ugh, I am sorry to hear that you are going through some hard times. Its miserable and stressful. We had two kids like that last winter - defiant, rages, ugly words, potty talk, sexualized behaviors, hyperactive and impulsive. They would fight each other or else gang up on one or both parents. Worse their PANDAS would seemingly feed off each other. The only way to shape behavior during these flares is to shape environment. You the parent probably know what triggers rages and can handle them when out of control. I dont think kids can do that, PANDAS or not. I remember that, with our kids, just hearing eachothers voices would be overstimulating and trigger more wildness. Each parent would take a kid (or else one would go to the grandparents). The goal was to try to create a safe spot, a calm place to read books, play with their ipads, watch movies and listen to music. So I think you are on the right track. Also if possible try to give your non-PANDAS kid times to break and live life without the stress of her brother. And yourself too! Risperdal also helped us a lot, we gave it to the kids for about 2 months.

This sounds familiar. Our daughter needs to be with us (or my parents) at all times. Last winter we could barely get out of the house and both parents needed to be present. We feel like we are living large now that only one of us parents needs to be with her at all times. We haven't discovered any magic pill yet, except that anxiety is a symptom of PANDAS. CBD seems to help some. She is also very fond of sugars and refined starches. We have tried to use herbs to fight candida with the extended abx use. We also try to get pro-biotics in either as pill or as kimchee, sauerkraut, yogurt, kefir,

I am sorry your family is going through this. Our daughter had her first flare at age 2 (2 months short of her 3rd birthday). We also first thought she had autism (there are some who think autism is also immune related.) Her primary care doc did prescribe augmentin but we saw no improvement except over the course of several months she improved slightly. Dramatic improvement was not observed until Dr L prescribed Clindamycin and Rifampin. When you look back do you see signs of PANDAS? Particularly immediately before getting sick and afterwards. Many of the behavioral episodes we experienced pre-diagnosis were in fact small flares and with young children its harder to observe symptoms. As for your trouble reaching a PANS doctor you will have to be a strong advocate for your kids health. If you stick around here for a while you will notice many parents complaining about lack of support from PANDAS doctors. They are swamped.

That would be great information but from what I have read we know little about this process and each child seems to have a different path for reasons not understood. Additionally external factors influence recovery, e.g. infections, allergies, stress. I have read a few claims on antibody half life. This study http://www.ncbi.nlm.nih.gov/pubmed/2424931 (relating to immune deficiency) states that antibody life is a function of IgG levels and further states that "The serum half-lives of IgG were highly variable, ranging from 22 to 96 days. The mean decreased from 43 days in the first to 33 days in the third and fourth studies...Patients with the highest serum IgG concentrations tended to have the longest half-lives, suggesting that intrinsic IgG production might falsely prolong the calculated half-life of IgG"

We think CBD has helped my daughter currently in a flare. She has taken CBD 2x daily for about two weeks and we have observed an improvement in OCD and anxiety - a calmer house. She doesnt think it has helped her but her ability and desire to verbalize emotions is poor during a flare.

One of our kids experienced no benefit, and the second experienced a slight increase in OCD and tics, however was not taking the proper abx at the time. Both experienced severe flares after T&A, and one had much worse flares after. Neither, however, had their tissues cultured, which appears to be useful.

Facetime is Apple's proprietary video conferencing software. Dr L hired person to interface to the public and she will set that up.

Interesting, thank you for posting. Does the bluebird silver taste any better or worse than their standard offering?

I will second powpow's statement on Dr L. We had to literally drag them in when they were at their worst. It was hard as they were alternately screaming and laughing at people on the street. The stress of a doctor's visit to a PANDAS kid brings on the worst of behavior. Dr L now does facetime visits, which makes things a lot easier on the kids and parents. Also PANDAS kids have been known to do crazy things, so as m2a recommended, having a second person in a car is important.

We decided to homeschool before we knew about PANDAS, so I am obviously biased when I state that they learn more through home education and unschooling. That said I think the first goal should be treating PANDAS. If PANDAS continues untreated so many things are difficult to impossible - happiness, good social relationships, education, career. You may need to consider pulling them from other activities as well or at least monitoring the health of kids they are exposed to. We did try to integrate them into home school co-ops, extra-curricular activities and sports for both life-enriching and social reasons. Unfortunately they caught coxsackie about 2 months post-IVIG and then were exposed to strep 4 months post-IVIG (but did not appear to get sick) and have been on the decline since that exposure. As we are likely going to need another round of IVIG we will try to be more careful with exposure, particularly for the first 6 months. It is very difficult for them to be robbed of these activities and friendships.

How do you define failure here? Does it mean recovery then relapse? Or does it mean failure to show any significant improvement?

We are in very similar straits. My 6 yo daughter sees Dr L and has improved, but after a strep exposure this spring has regressed. Its very difficult to determine what she is going on in her head, she is irritable, ADHD yet has low energy, gas severe separation anxiety, depression and OCD. She is doing steroids and abx (clindamycin) but isnt improving, so we think she may be in for round 2 IVIG. I am not sure where you are on the PANDAS journey but we have seen ups and downs with treatment. There are a few strands of thought here, namely the standard steroids/abx/IVIG/PEX; as you are seeing Dr L I assume you are following that. There is also the infectious disease trigger path looking Lymes, coxsackie etc. Have you looked at that? I made a post regarding frustration at lack of progress (2.5 years) and we will start testing for mold.

We have noticed fatigue and lethargy with kids on steroids. They will also become more hyper and often silly, but then quickly retreat back to something more restful, perhaps thats the yeast? My daughter is on steroids now and spends most of the day playing on the ipad, watching videos or laying about. They have not tested positive for any other infectious agent.

I think this topic will generate a LOT of interest. Many of us are struggling to keep our kids healthy and out of PANDAS flares. Our childrens onset was episodic and gradual until major flare. We were not aware that they had PANDAS until things got bad. That said, when we look back we did not see any PANDAS symptoms until after their first round of vaccines at age 3 (we delayed due to concern of autism.) Furthermore both children got a booster vaccine last summer and exhbited a slow decline into the worst PANDAS flare to date. We are suspicious now of that link, but cannot positively associate. There are so many factors children are exposed to and it is hard to untangle cause and effect. But this is PANDAS - the setbacks are extremely painful - so our policy is to be over cautious.

I would also extend the suspicion of PANDAS beyond those sudden changes. True my daughter had a sudden change which brought on significant issues; she was diagnosed with PANDAS. My son also has PANDAS, however he exhibited waxing and waning symptoms which grew in severity over several years. And in hindsight we saw the same thing with my daughter for years before diagnosis. Many of these changes are complicated by early age of onset. We saw PANDAS in those early years as ADHD, ODD and inappropriate behavior.

Yes, thank you for not disappearing. When you talk about the short lived flares from strep exposures, is your daughter getting sick or is she just reacting?

PANDAS is a clinical diagnosis at this point. The cunningham panel may or may not be used to re-enforce that diagnosis. Our own kids have had ASO within range yet have severe PANDAS symptoms. I agree with jan, you may try an antibiotic but you should see a PANDAS specialist. If it is PANDAS each flare may get worse.

Good reading, thank you. Science cannot advance fast enough it seems. Also its interesting to note that the last two items used to be on the fringe.

Thank you. @pr40 I understand the principle of developing "acceptance" of your children and their conditions. That said, symptoms wax and wane. There are times, however brief, that the sun shines so brightly and give us hope that that is truly normal. Perhaps. I have read varying protocols for mycoplasma eradication ranging from days to months and with different abx. Why minocycline? @llm Your story was fascinating but I am glad it worked out for you. So I think that is a great suggestion to pursue. I read up The kids are home schooled - I dont know how they would handle a public or private school. We moved into our current home as renters about 1 year ago, and it was the fall of last year that brought on the worst PANDAS flare. Again this wasn't immediate, but perhaps with fall rains or usage of water in the house, it produced enough moisture. There are a couple of known mold sources (e.g. gray water drain for laundry in basement) but I do not consider them major. We also live in mixed farmland and woodland, but there are a lot of dead and rotting trees around. Our old house had one mold area in bathroom (leaking toilet) but with remodeling was replaced, however the basement had a musty smell but no know mold we could see.

The kids see Dr L. While she is good I have read a lot from this forum on the need to research other triggers for PANDAS, hence the testing. We have recently added a holistic doctor, I am not sure if I am sold on him though. He has looked at thyroid, detox from metals so far. Nothing about vitamin and mineral levels. So this may be a good avenue to approach. I will order up some p5p. We need to solve the long term immune picture, but need to do better with day-to-day life until then. Thanks.

What mycoplasma levels are you looking at IGG or IGM? Or the fancy DNA test?