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Can you clarify: Are your son's cycles absolute or (perhaps and?) does he toggle back and forth seemingly randomly? @ibcdbw did you ever do the contrasting blood work in and out of a flare? Our kids also have the purple circles under their eyes and flushed cheeks during a flare...interesting. So many unconnected dots.

From reading this forum I have read reports of it working anywhere from immediately to months afterwards. There are also cases (powpow?) where it made kids worse, I think that was Lyme. As far as timeframe, Dr L made the decision to do PEX about 4 months. after.

From reading the IVIG papers published last year the gains came around 4 months to a year+ as the immune system retrains itself. We saw a little improvement about 3 weeks in and then great improvement after three+ months. BUT...every child is different and there is other noise you likely have to account for (for us a coxsackie infection.) My daughter had a second IVIG though after a relapse which has shown little effect, 8k down the drain...

I am sorry to hear of the years you have suffered with issues. I am glad you are taking some steps to consider what the root cause is though and wish you the best in that effort. The wait for Dr L is running 4 months. The good news is that PANDAS awareness is increasing, the bad news is that the specialists are overrun. Your strep numbers may or may not be helpful but don't rule out PANDAS. Many/most doctors have the notion that if there is no strep infection, that rules out PANDAS. The are other infections - Lymes/coinfections, mycoplasma, HHV6 etc - that may be triggering or suppressing your immune system and it would be wise to get those tests done now while you wait. That can be done through any supportive doctor, or a Lyme doctor such as Virginia Integrative Health. Dr L, incidentally, is primarily a strep doctor and is reluctant to explore issues like Lyme, so it may also be helpful in selecting a doctor.

I am really sorry to hear this. I also know the feeling of dread when you consider another child has PANDAS. It is so awful and dehabilitating for children and parents. Thanks for telling your story, details and all. The standard psych terms for the mix of PANS dysfunctions failed to communicate just what the child is going through and what that behavior looks like in day to day life. So your story about obsessively hating a cute little baby illustrates the absurdity of it all. (BTW, in the early years of PANDAS we caught my son pinching babies a couple of times; we could never figure that out until diagnosis.)

Likely not, but then Dr L uses an amazingly individual approach for each patient. She encouraged us do the Cunningham panel and has looked at ASO, Anti DNase B and antistreptozyme results we have done semi-regularly at our primary care doc.

I have consider this but not tried - pet medicine? Canadian pharm is slow.

I had doubts as well when I brought my daughter to Dr L. We went though my daughters history and towards the end I asked if she thought she had PANDAS. In hindsight it was quite clear to me, but at the time I was suspect. A clinical diagnosis seemed so subjective - this is the person who will be making money off the patient, right? But her positive response to antibiotics and then steroids was proof enough. We also did the Cunningham panel for confirmation. As ejh mentioned, be careful though with many doctors as some will perform a strep swab and blood work and if numbers are in range, they will dismiss PANDAS. Also, as many others here have advised, begin testing for other active infections like Lyme, mycoplasma etc.

Thanks. I have always liked the Diane Rehm show, she covers so many interesting topics that lay beyond the normal pale of interest.

We did not have IgE tested before IVIG but have noted elevated levels previously. Positive response...until the next strep exposure.

My daughter also had restrictive eating and lost >10% of her body weight, although we did not notice this until a consult with Dr L. She had been on other abx but clindamycin and rifampin cleared restrictive eating and other lingering symptoms. I truly wish I could be in similar shoes (no more arguing for meds!) but I think doing a consult would be advantageous particularly if things get worse in the future. The first visit is painfully slow but the PANDAS symptoms can present so quickly. Also I would try to minimize exposure. @searching_for_help Excellent if dreadfully sad post. The health care "professionals" who suggested hospice should be fired. Do you think there is something in your house that aggravates your daughters symptoms?

Have you done contrasting bloodwork during the high and low point of the cycle? Do the neutrophils drop?

pr40 that is a good point. My nephew (likely PANDAS) went to an expensive college only to fail miserably. He clearly has the desire to go to college but doesnt have the ability to translate desire into action.

It appears that he graduated from the PANS into CANS and now into an agnostic stance from this publication dated July 2015 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4502346/. That said perhaps his clinical practice differs from his scholarly disbelief. I am glad I read this - whether or not I agree. One statement was that a study by Leckman et al found exacerbations that feature tics and OCD do not also come with other symptoms like ODD and anxiety. (From my sample size = 2 kids, that is untrue; however we do note that underlying issues such as ). A second less debatable statement was made that PANDAS can be divided into two groups PANDAS-choreiform and PANDAS-OCD/tics. ... two differing subgroups of children fulfilling the original proposed criteria for PANDAS have been reported: 1) the original cohort, displaying choreiform piano-playing movements (PANDAS-choreiform), and 2) a PANDAS-chronic tics and OCD cohort that includes children with at least two prior acute fulminant episodes of tics or OCD in a temporal association with a GABHS infection, but lacking piano-playing movements.6 ... PANDAS-choreiform cohort has biomarkers very similar to Sydenham’s chorea (elevated antidopamine 1 receptor (D1R) and anti-dopamine 2 receptor (D2R) immunoglobulin (Ig)G levels and possibly elevated anti-lysoganglioside- GM1), whereas the PANDAS-chronic tics and OCD group has normal levels of antibodies to tubulin and D2R, and control groupdependent alterations of anti-D1R and lysoganglioside-GM1,

I am really saddened to hear of your struggles. Life must be extremely difficult and stressful now. Regarding encephaltis, I have been curious about this as well - differentiating encephalitis vs PANDAS/PANS. It appears that treatment is often similar. @Jan Do the Ig numbers from blood tests reflect on likelihood for encephalatis? I thought a lumbar puncture needed to be performed.

What does not make sense is that neither my generation nor my parents show OCD or SC. Yet we have two pandas kids, and both sisters likely have one (although do not recognize it as such). I think it's good that you recognize the earlier symptoms even if it's dream crushing and scary to do so. Refusal means going through the endless cycle of psych meds that never really work. I, at first, did not recognize P, I thought we were bad parents, or that we had too much stress from work etc in our kids life. In a way, recognizing P was recognizing my own sense of fatigue from parenting and frustration about our inability to see our kids doing typical activities. Instead of two difficult kids - which we could not solve (and which others judged us for) - we had a disease to treat. Kids do not naturally want to be picky eaters, defiant, rageful etc.. They want and need real help.

1 + 1 = 2, just over a month. I havent heard of that approach - has your immune doc read up on https://www.pandasppn.org/ ? I would ask him on what basis he made the decision to go with 1g/kg. Its your child. I believe the immune deficient folks seem to go from 250mg-500mg/kg over a single day, with ITP using 1g/kg over two day. That said, we also noticed an uptick in symptoms after the first IVIG around week 3. We have heard similar stories so there may be something to that.

There isnt much out there written from perspective of the patient, mainly its parents. But there is a lot of first person information on symptoms like OCD. This film captures some of that http://www.ocduk.org/locked. Here is one awesome blog from a super-smart and articulate woman about your age with PANDAS https://thedreamingpanda.wordpress.com/

I believe our kids have had the 2g/kg dose over two consecutive days. Is your doctor planning on administering IVIG on a monthly basis? Our kids have had IVIGs but we have yet to really get to lasting success yet. We did notice a gradual improvement over the course of 4 months though, looking back. (With all of the fluctuation in symptoms, its hard to assess progress in the moment)

My son walked into an older glass storm door in June 2015 and suffered two large gashes to arm and leg. He was stitched and stapled up and appeared to be healed but just this week we noticed a black and blue area, and x-rays have revealed 3 more objects (likely glass) inside of his leg. While there is swelling around the area, there is no heat or sign of infection. His PANDAS symptoms have gradually increased and are now severe with ODD, some OCD, ADHD, and lately periodic aggression. Tics have progressed from sniffing everything in sight to repeating odd phrases and rhymes, potty talk. We thought this flare was from an exposure to strep (his sister just had an IVIG in August). Can a festering wound aggravate PANDAS? He is scheduled for surgery in a couple of days. Should we use abx before and after surgery, and if so what do you all recommend?

I think I get what you are saying. Or I am in about the same position. I feel like I am overwhelmed with the pressure, barely keeping afloat in life. Our friends have passed us by, both kids and adults. Medical professionals are of little help dealing with day-to-day life and healing takes time. Its you against the world. There are a couple small outposts, like this forum, but the weight of your world rests on your shoulders. I am completely unqualified to give you any advice (blind leading the blind?) but here is what we are trying to do now. We have had to let our expectations slide. We are trying to get by in the day to day sense. Our energy is focused on getting whatever treatments for PANDAS that are necessary; enough said. I went from trying to excel at a job to taking taking FMLA to help my wife. We try to eat healthy (the never ending hope of dietary change). We home school, but try not to push them when they have cognitive issues or OCD gets in the way. We find things they like and try to keep them busy on that for example piano, playing sports in the back yard. We try to keep them as happy and hopeful as possible. Hired help is good idea. But also think about strep carriers and any illnesses they bring into your house with close contact. But you probably know best what you and the kids need to get by. Its a balance between risk of infection and reward of living - sanely - to fight another day.

We use Dr L as well. I am always impressed at how each patient appears to get a different treatment. Why bicillin? The steroids appear to help particularly with tics, but we also notice they come back immediately after we start tapering. At least for us they dont change the course of the flare presentation.

Thanks for posting this info.

Every kid seems different. My daughters seems to get the headache about 24 hours after the conclusion and it lasts for about three days. Each day gets better though. My son has had one, but it only lasted a day.

I would like to add - as a question - Lyme's disease and co-infections.