DeterminedMomVA

That is really a great handout! We've just started the iep process, and this will really help us. Thanks!

Does anyone here have a psychiatrist in the DC area that they can recommend specifically for treating/helping a PANDAS child? While DS's psychiatrist is open to the idea of PANDAS, our impression is that he doesn't put much thought into getting to know DS or thinking through his medication recommendations. We feel like we're re-familiarizing DS with him each time we see him, and he is really not knowledgeable about PANDAS. Thanks.

Congratulations! What a relief! I believe that you have CIGNA. We do too. Do you know under what code it was approved?

I'll echo checking out the clinical trial. ALso, it typically takes 21 days to begin to see any effect from Zoloft....I'm not sure if having started the Zoloft will disqualify you from the trial, you'll need to check that. Find a PANDAS doc ASAP if you don't pursue the clinical trial. There are some that do phone consults. It sounds like you've caught this early. You may be able to get your son out of PANDAS more easily than those, like me, who took too long to figure out the likely diagnosis. Good luck, and keep advocating for your child.

Interesting question. My ds has had a low grade fever for 9 days now. Pandas symptoms are pretty bad after a very good 2 months ( he's on a treatment dose of augmentin, and has been continuously for 2+ months)...symptoms ramped up again about 2 weeks before the fever started. Pediatrician thinks its viral, but finally ran bloodwork Friday. Pandas doc prescribed 2 week steroid burst/ taper 3 days after the fever started. Pandas symptoms may have seemed a little better yesterday, but fever continues, and it's too soon to tell if his symptoms are really improving. Found out someone else we know of, but spend no time with, has also had a fever for a week and was also told it was viral. So, im not aware of prednisone causing a fever, but we currently have both a fever and steroids going on at the same time.

I'm sorry you're struggling with this too. We're also in VA. Dr. B in CT takes some insurance, including ours. It's a 6ish hour drive from NoVa. Not much cheaper, all considered, than going out-of-network to Dr. L, but it's another option. Some people stay at Ronald McDonald house in CT when they are seeing Dr. B for, I think, about $10 per night.

How forward thinking! That certainly appears to be good news.

Yes, he's been on augmentin for over 2 months now. Just resumed steroids last night because dr b thinks its an acute sinus infection. It makes some sense-- the exacerbation started 2 weeks ago when he caught a cold from me and his sister,and he's complaining of pain behind his eye. I just wish the fever would go down instead of up.

DS is sick right now. He's had a 100 degree fever for 4 days that we can't seem to get down with ibuprofen or tylenol, and he's strep negative. He's also really experiencing an exacerbation of PANDAS symptoms. We're following Dr. B's advice following a phone consult yesterday afternoon, but so far no improvement. It just got me thinking - if we needed to take him to an emergency room in the metro DC area (preferably NoVa, but I'll travel further if needed), does anyone have any experience with any with doctors that are likely to be knowledgable about or open to PANDAS?

As a point of reference, in terms of dosage my 10yo DS (70 lbs) has been on 500mg of Augmentin 2x per day (so a total of 1000mg per day) for almost three months now for a chronic sinus infection. It made an immediate, remarkable difference in PANDAS behaviors, but a cold and possibly a few loose teeth over the last 2 weeks have caused a remission, despite continuing the antibiotics. We are pursuing IVIG at this point, but it will take a while to get it approved by insurance (fingers crossed) and scheduled.

I wonder if showing your doctor the IOCDF paper on PANS/PANDAS would help? http://www.ocfoundation.org/PANDAS/ It seems to have modified slightly over the last week, and they say about antibiotics: Antibiotics: Dr. Swedo also did research showing that using antibiotics as a prophylaxis to prevent strep successfully reduces neuropsychiatric exacerbations. Another study will start soon as a collaboration between Harvard and the University of South Florida. They will be examining a common treatment course successfully used by clinicians: using antibiotics in children with PANDAS. Early in the disease if strep is present, this is an obvious course. But no research has yet been done on why many clinicians find that a longer term course of antibiotics often seems to offer great hope to families suffering from this disease –even after the actual triggering illness is over. As such, some physicians have found the following particularly helpful for new, sudden onset cases: ■Use antibiotics for 3-6 weeks initially. Use of augmentin has anecdotally been found to be more effective at a relatively high dose as well as the cephalosporins (cephalexin, cefdinir) and azithromycin. Consider using probiotics but not at same time of the day; allow 2-3 hour window between. If no improvement is seen after 3-4 weeks, a physician may consider an alternate class of antibiotic treatment. If symptoms completely remit, a trial off the antibiotic may be attempted. If symptoms return, additional treatment may be warranted. However, in many cases, a physician will see a child a several weeks after the initial onset, or in a second exacerbation. In that case, some clinicians have recommended the following: ■A throat culture can still be very informative at this point as well as antibody levels. Then treat with antibiotics as above while waiting for the results. If there is a marked reduction in symptoms, gradually wean. With a recurrence, antibiotics are reintroduced and continued as needed. Try to gather retrospective information, ask for detailed pediatrician records to be forwarded and nail down the exact timing of testing and labs. Since prior testing may have been limited, a trial of antibiotics appears to be low risk. If the doc won't go for a longer trial of abx, even if your child reacts badly to stopping them, I agree with trying a phone consult, or making an in-person appt with another PANDAS specialist.

This is dated, but short and easy to read: http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf This is longer, but lists some possible accommodations the school might make: http://pandasnetwork.org/wp-content/uploads/2012/01/PANDAS-OT-Article.pdf

That had me in tears. Thanks for posting it. I too wish they'd put it on youtube.

It can. That was my DS10's main presentation at first, along with very mild OCD and an extraordinarily severe deterioration in handwriting (which was really what enabled us to identify it retrospectively as the first PANDAS episode). We think that was the first exacerbation. It lasted about 3 months, and wasn't identified as PANDAS at the time. The first suicide threat was exactly 10 days after a strep throat diagnosis, and the depression lasted 3 months before he returned to normal. That was followed by a mostly normal 6 months, then all xxxx broke lose with the second exacerbation, which included basically every symptom on the list (except bedwetting) with one of the main presentations being suicidal ideation, emotional lability, OCD, rage, and impulsivity. Child was normal and very happy before all of this started. No red flags at all. Edited to add: We do not appear to have any co-infections, such as lyme, complicating things.

Thanks for clarifying. I bet it will feel good to call in July and cancel!

I think I would have cancelled it too. If the improvements you're seeing had gone away after IVIG I never would have stopped second-guessing myself. I'm stunned that the next available IVIG appt isn't until August, though. That's sobering, since now that my DS has a go-ahead for IVIG with a PANDAS doc I was hoping to get it done much more quickly than that. Hang in there, and enjoy the 'normality'.

Claritin and Zyrtec both activate my DS, and Claritin stopped working for him anyway. I have given him Benadryl if he really needed something (that was this fall pre-diagnosis, but he had PANDAS at that point, and it did seem to help him some without increasing PANDAS symptoms), but I think you have to take it every 6 hours or so, and it can cause drowsiness.

Good luck tomorrow. I know you have the RF diagnosis, but do you also have information on PANDAS for the ped tomorrow? The following links are excellent, if you have time to print them and take them to the ped: http://www.ocfoundation.org/pandas/ http://intramural.nimh.nih.gov/pdn/web.htm http://pandasnetwork.org/wp-content/uploads/2012/02/2161-0665-2-113.pdf I hope only good things are waiting for you tomorrow.

Thanks. My DS10, whose first PANDAS exacerbation ran from Jan- April 2011, and then began again September 2011 has also always been above grade level and in the gifted program until this year, when he just couldn't cope with the demands. He's getting mostly B's now in general ed (as opposed to A's pre-PANDAS in the GT program), but requires an extraordinary level of support at home with his homework. He is very anxious about going to school and is frequently tardy as a result, has lost virtually all executive functioning skills and has become very disorganized (he's unable to remember to bring his homework home and and unable to attend to a complex task for more than a few minutes, and during the worst of the exacerbation had largely illegible handwriting and was extremely resistant to doing any writing at all. The school was really great when the initial diagnosis was mood disorder (likely bipolar) and put lots of informal supports in place, but nothing in writing. They seem more hesitant to put the accommodations in writing in a formal 504 plan, especially since he's been doing much better over the last 2 months since Dr. B diagnosed him with PANDAS and started treating him successfully for it. I'm not sure how the 504 meeting will go, since they keep saying that he's doing well enough that they don't think we need to put the accommodations in writing. Without a truly extraordinary teacher and guidance counselor, this year would have been an unmitigated disaster for him, and his self-esteem has been very badly affected, especially after the tics became noticeable to his classmates. I'm worried about the 504 process, but am hoping for the best, since he's not failing academically this year. Next year will be a different story, with the additional organizational demands of middle school. I'm thinking of focusing more on the manifestations of this disorder (OCD, ADHD-behavior, emotional lability, anxiety) rather than the cause of the symptoms (PANDAS) when pursuing the 504 plan, but I'm not sure which approach will be more successful, especially now that he's suddenly functioning better again. Anyway, thank you for the tips on the strategies and accommodations that you managed to have the school put in place. I'm hoping for the best.

Patric, could you share what accommodations your ds has? We're about to start the 504 process.

What good news, and what relief your DS must be feeling! Fingers crossed, knocking on wood, hoping it lasts! I'd be nervous about messing with success and would also hesitate about going ahead with the IVIG at this point. I'm so glad to hear your good news!

At the moment we are using Nasonex (nasal spray that it a steroid) and Patanol (anti-histamine eyedrops) to treat the symptoms of the allergies, but not the allergies themselves. It's proven effective so far this year in reducing DS's allergy misery, but we'll see what happens as grass pollen starts to ramp up. Nasonex was prescribed by Dr. B, Patanol by our pediatrician.

DH and I both suffer from migraines. Maxalt has worked really well for both of us, as long as we take it as the migraine is starting rather than after it really takes hold. DH would several migraines per week without Maxalt, but now very rarely experiences a full-blown migraine. I get one every few months, but Maxalt nips them in the bud. We haven't experienced any side effects from the Maxalt.

Hi SleeplessinVA, I just wanted to check in and see how you and your DS were doing? Is he improving at all on the antibiotics? I also wanted to make sure that you knew that a lot of us see very positive effects from giving ibuprofen as an anti-inflammatory. I did that with my DS while we waited for our first appt. with a PANDAS doc, and we did start to see him improve with that, even before we started ABX and did a steroid taper. My DS10 is still taking 200mg twice a day, along with the Augmentin that Dr. B prescribed. If you are unable to get into NIH, or don't want to pursue that option, and you are willing to travel, you might want to make an appt. with Dr. B in CT (who takes some insurance, unlike Dr. L). I think you could get an appointment before August (don't know for sure, though), so you could get expert help sooner than August. Hang in there, DeterminedMom

Call NIH and ask. I dont know the answer. You did the right thing, sleeplessmom, in seeking and getting treatment now for your child with this ped in md. He seems to have done the right thing, too, in what he prescribed.