dasu

Thanks for posting. There is a lot of anxiety, stress, sadness and disappointment that comes with PANDAS. I have found few people supportive or understanding, and this article drives home that fact. We ate our Thanksgiving by ourselves dealing with violent threats and aggressive behavior from our kids. It is not easy to share those depths with other people who talk about food, family complaints, football games and Black Friday shopping. ( this one was good too http://www.washingtonpost.com/news/parenting/wp/2014/09/18/you-know-that-mom-who-isnt-joining-in-the-proud-of-my-kid-conversation-yeah-ask-how-shes-doing/)

My kids have a tendency to repeat actions, noises and words. We have to be careful what they watch and who they are around. I almost feel like I am developing OCD being mindful of this fact. But as Pr40 said, I would be happy with drumming, it beats spitting noises and the like.

We are late to the non-strep infection party. I know, I should have got on board earlier. Found another pediatrician and are checking for Lyme and co-infections, mycoplasma and doing another EBV check. The whole family got mono back in December 2012, so need to check that. So far the only thing that we have learned is the mycoplasma for daughter was 1.3 slightly out of range and the protein ratio was off.

We tried valerian on my daughter which also seemed to make her more irritable. But I have not heard of lemon balm I will order that. I work from home but am taking a FMLA leave to help out, they often need man-to-man coverage. The iPads have been wonderful between games and movies. They are scheduled for IVIG in the near future.

We have two kids who have PANDAS and are flaring now. They go through periods of really wild behavior primariy focused on talk about private parts, pooping&peeing, fat or ugly people etc. Sometimes this also graduates into more aggressive or violent talk and actions. We have discovered that its best to separate them in this as together they become self reinforcing. But behond that we are stuck. We cant go out anywhere because they point at peoples privates and make comments and we cant seoerate them because of fears,the whole family must be together. We ha e noted that no discipline or rational thoughts works during these times. Stress seems to provoke this. Stress may include us reminding them that behavior is inappropriate. After some time they get out the ugliness and usually want quiet. At that point other methods like the Howard Glasser stuff can work. My question then is what do we do to calm then in those brief periods where their minds are out of control? Are there any suggested methkds to calm them or relieve intrusive thoughts and actions? Or do we just need to wait it out? Most times after an hour or so it subsides. But there are still behaviors we can't allow as they are unsafe - we can endure talking about frightful monsters that live in there rears, but can't permit them to fight, run wild around the house etc.

This is interesting - I will have to read more. I've seen Buhner referenced a few times, so I will start there. The larger problem I have is what to do with that information, putting it into practice. We are doing the Lyme and co infection test and the mycoplasma test on the kids (well actually only one to save money on the theory that as both flare together a single cause is the problem). Any other suggestions? One intriguing observation for me is that neither my generation nor my parents have OCD, depression etc. However both of my children are PNDAS and some of my nieces and nephews are effected by OCD, Autism, or bipolar disorder, likely PANDAS.

Thanks for sharing your story. happy to know you are on the path to health.

I'm impressed you are doing reishi, it sounds like you have done some research. We missed OCD symptoms in my son as I thought OCD was primarily constrained to symptoms like repetitive behaviors and fears over contamination. This web page broadens that a lot, so you might want to check that out: http://pandasnetwork.org/yourstory/your-experiences/ocd/

I did not know you can get infected without traditional physical symptoms. My son is a slightly better. I am not sure if its the steroids or just healing time. I think he is having a reaction to the steroids as he complains of itching, particularly at night. We are going to cancel thanksgiving celebrations with family (some of whom we suspect may carry strep or something else).

Both of my kids are now a week into a bad flare. Hyperactivity, fears, ODD, fighting with eachother, impulsive behavior, intrusive thoughts, can look spaced out at times and have episodes of this odd echoing of inappropriate or odd talk and action (example - him "quinine", her "quinine", him "hi buttman", her "hi poopy buttman" him "smeary poop" her "diuretic", they both then pull pants down and start laughing...) I am not sure if thats tourettes - as they go back and forth and say differing things - or ODD, or what. Physically they are tired and have red cheeks and sometimes slightly elevated temps. We are only able to function as a family when mom and dad each take one child, as they would get too wild together. The kids were previously on curcumin, quercetin and rotations of one of oil of oregano, olive leaf extract and pau d'arco. So here is the question. We saw and played with two families who may have a child with PANDAS, one about a month ago and a second about two weeks ago. I noticed some very slight symptoms (itchy red eyes, congestion) after visiting with the first family; that could be allergies though, right? Then we played with second family and about 5 days afterward all ###### broke loose. We saw a doctor and did routine blood work and Lymes test but there are no signs of infection. We subsequently saw Dr L and are on antiobiotics and steroids and are counting the days now to recovery. I would like to both understand why we had a flare without signs. Is that common? I am assuming that its not something like stress because both flared at the same time.

That is interesting, I did not realize that all those other factors effect gut bacteria. We have been giving probiotics but did not see a change. We are in a *bad* flare now so it didnt prevent that either. Because of that flare the kids are on Augmentin and then prophylactic Azithromycin. Maybe in a year we can revisit. Equador sounds fun.

thanks for posting

Interesting news, this is better than a fecal transplant I guess. Why does treatment need to be performed regularly? Do the good flora get killed off in the gut? If so why?

Those symptoms sound like familiar PANDAS symptoms. Dr L diagnosed my daughter when we were well above a low but still had issues with sleep, anger, anxiety and, although we didnt realize it, she also wasnt eating much. A week into the antibiotics those issues subsided.

Funny (or not) I had a similar post on this a week ago. Our doctor recommended that we keep the kids from any sources of infection to let their immune systems calm and heal. Can you take your kids out of school and homeschool?

One of our doctors - an ENT - has claimed that prophylactics arent needed after a T&E. We do herbal prophylactics now.

Vicky, Thanks for sharing this story. Its great to hear that your son is doing better. As others have said though other antibiotics are often needed, I have seen that with my daughter. You also need may see symptoms gradually subside...as well as suffer through flares. For ourselves we have tried to minimize social contact with sick kids, homeschool etc. We just pulled the kids from a home school group as several of the families have been battling strep and we noticed immediate symptoms with the kids.

Do you know if he is around any strep carriers? I realize this is a gray area but we have noticed that PANS symptoms seem to be aggravated when around strep carriers.

I dont have an authoritative answer but we give kids oil of oregano and olive leaf extract breakfast and dinner and probiotics at lunch. We seen improvement, but started both at the same time.

They were on prophylatic penicillin but we switched out for 2x daily olive leaf oil, oregano oil, and elderberry. They both had their tonsils removed and the doctor claimed that once removed we should be able to go off penicillin. They also take tumeric and quercetin as anti-inflammatories. I really want to find a group of kids whose parents are committed to keeping them healthy over in activities etc. As I mentioned earlier the co-op they are seems to have a lot of strep going around. In fact Dr L has noted that she sees a lot of patients from Charlottesville. Many of the activities in the co-op utilize shared toys and tools.

The kids (5&7) are home schooled but do a co-op. The first day of co-op was last week and we have noticed an increase in 5yo daughters hyperactivity and a vocal tic (constantly makes slurpy tooting noises with her mouth). Its been a great summer after a flare that came on for both kids in late winter/early spring. This may just be coincidental, but its quite frustrating as the kids enjoy school and other events with friends from co-op. So here is the question - whats driving the tics and hyperactivity? Is it an infection or sympathetic reaction to other kids strep? A number of families have been battling recurring strep through the summer.

Thanks for the rundown. It is so helpful to see long term high level assessments of treatment. We live north of Charlottesville and have to kids ages 5 & 6 with PANDAS. Like you we see saw/see many of the same symptoms in our kids, finally go to Dr L and homeschool. We havent broached plasmapheresis or IVIG yet. I think we got into this mess because we used to regularly take our kids to our gym's child care facility where they would pull down many infections. Anyways, we havent broached ivig or plasmapheresis. My daughter is still quite fearful, has urinary frequency and emotional lability. Son is hyper, has some tics and anger. You must have some good parent friends. Despite all the talk of "please tell me if your kids are sick..." we keep bumping into parents who, in the middle of some activity, starting tell us that their kid has some bug, but they had to get out of the house so they gave them some tylenol and here they are, playing with the kids. Homeschooling is a challenge though with some of the issues they have displayed (hyperactivity, uncontrolled laughter, etc) We have learned that structure is key, and keeping them busy and focused on a task is essential to their well being.

That is an informative article, but I think I will have to re-read when I have more time.

cara, i can understand the desperate times calls for desperate measures approach. im there too. there is no clear and singular path out of PANDAS. you will do anything to see an improvement. so i am glad you can be the guinea pig for BRAVO. but for that money i would stop with the abx. my son just had his T&A, and the doctor claimed that research shows prophylactic penicillin does little good for PANDAS. what to believe? there is something "out there" that is changing the way our bodies develop and function. i look at my parents and they have no allergies or health issues, both grew up poor and dirty, my dad without indoor plumbing. ive got slight allergies. and my kids...well i am here, arent i? and its not just me, my parents look around at their friends grandchildren and everyone is reporting the same thing: problems. severe allergies, seizures, depression, OCD, bi-polar, odd developmental issues. my parents scratch their heads, the main worry of their day was polio and rheumatic fever. i know a family that adopted an orphan from africa at age 5 or so. he barely got enough to eat, never had any abx or immunizations. now living in america, the boy avoids many of the illnesses the other kids get. i know its a one off, but it makes me think...

what is the difference between prophylactic protocol and daily abx? my kids are on prophylactic penecillin. i have wondered how it effects their stomachs, and as we try to give them lots of probiotics (yogurt, fermented foods, pills) if that negates their effect. cara, where did you get the information on the three gut types? and why on earth does a probiotic cost 860 dollars?!