Worried_Dad

Hi, browneyesmom: I can share our son's experience. Things were awful in late August / early September last year. He was completely out of control and quite frankly terrifying us, suicidal and raging. We were on zithro then, but no noticeable improvement after 10 days of it. For us, by Day 2 of the steroid burst, it was like the storm clouds parted and the sun came out. His rages, hours-long crying jags, and suicidal talk just vanished. He laughed and smiled again. On Day 3, he actually said "wow, I feel good." For our son, it wasn't a subtle effect; it was dramatic. And a few days after the steroid burst ended, everything started downhill again, even though he was still on antibiotics. (He was also on 2 psych meds that we later found out were terrible choices for a PANDAS kid and that made a bad situation much worse... but that's another story.) Don't know if it's the same for all PANDAS kids. In our son's case, it was just really obvious improvement. Hope that helps!

Thank you all for your patience with my venting, for the sympathy, and for so many great suggestions! We're kind of following them all right now: have sent e-mails to Dr. Swedo, Dr. Leckman, Dr. Chugani, checking with the doc who took over for the DAN! doc who originally diagnosed our son locally (but passed away late last year), and working through Health Advocate. And Jena, the home infusion sounds very appealing. Dr. Chugani actually e-mailed me back and mentioned that this is an option after the 1st infusion, so I think we'll explore that one seriously: would make the process so much easier for our son! Jena, how did you go about arranging for in-home infusion? Do you think they would be willing to collaborate with an out-of-state doc (like Dr. K) on that type of procedure? Thanks again, y'all. This forum is saving my sanity!

ARRRRGGGGGHHHH!!!! We've decided to at least explore the possibility of trying Round 2 of IVIG again locally and just need a local doc to collaborate with Dr. K. Met with our PCP yesterday. Their practice has no interest in helping us at all. He actually told us that the pediatric neuro who was supposedly "helping us arrange the IVIG" locally (but refused to return phone calls when the infusion nurse tried to contact her on that ill-fated 1st day of Round 2) sent them a note that she had talked to Dr. K, did not believe he was qualified to make the diagnosis, did not concur with the PANDAS diagnosis, and did not agree with IVIG as a treatment. She never told us any of that and left my son hanging in the ER because she "had no responsibility." The woman works in the same building as the infusion clinic and the ER and would not get involved, despite the fact that our son is her patient. So - because of her note - our PCP has "serious concerns" about the PANDAS diagnosis and the IVIG treatment and wants nothing to do with it. They actually said "who is this guy, Dr. K?" and I felt like saying "somebody who tries to help these kids instead of telling them to go see somebody else!!!" I'm trying to work through our HealthAdvocate service to find a local doc who might at least talk to Dr. K and Dr. Leckman and might consider PANDAS as a possibility. The service rep with whom I spoke on the phone was simply shocked that we have approval from our insurance company for the treatment but can't get a doctor on board. She says it's always the opposite. I know everybody has felt this same pain... but it's so maddening when the evidence is there, the out-of-state experts are willing to consult, and the local docs just give you that patronizing stare and say "PANDAS is not real disorder." (Or worse: they nod, say nothing to you directly, and then send a note to your referring doc dismissing the whole thing.) Ah, well. Back to the drawing board.

Hi, browneyesmom: This is a tough one, for sure. FYI, you may already have seen this, but this very site (ACN / Latitudes) has some great articles about tics, OCD, autoimmunity, and PANDAS. You can check it out here: http://www.latitudes.org/anxiety_ocd.htm In particular, this article really stood out to me: http://www.latitudes.org/articles/vojdani.pdf When we first started struggling with our son's illness and inability to attend school, he was diagnosed with acute rheumatic fever with Sydenham's chorea rather than PANDAS. We spent much of our online time on an SC forum back then. One SC sufferer (wenwill, who also happened to be in the healthcare field) posted a really great series of posts about SC kids and school. We printed it off and gave it to our school administrators, and it seemed to help them understand some of the issues. You might consider giving this to them and explaining that PANDAS is basically "atypical Sydenham's"; it's got some great info. Here's the link: http://www.wemove.org/cgi-bin/ultimatebb.c...opic/13/59.html Hope that helps. I haven't come across a good "peer-reviewed article" that covers the full, nightmarish spectrum of symptoms these PANDAS kids suffer. Wish I had!

I asked Dr. K about this after the January sinus infection set my son back, but he was adamant about sticking with augmentin for prophylaxis. Didn't really go into detail; just said he had not had good luck with zithromax. We did do 30 days of zithro back in the "nightmare days" before IVIG, but we don't really know how much it helped. At that time, the psych meds (ativan, zyprexa) completely put our son over the edge, as we found out later when we tapered off them. Have to confess, we were very relieved to see how well the zithro worked to kill the sinus infection during that Jan emergency. We won't hesitate to ask our local doc for it again in the future!

Hi, Indigo: It's hard for me to say, really. We started on the augmentin shortly after our phone consult with Dr. K last Aug. At that time, our son's condition was off-the-charts horrible, and psych meds prescribed by a local doc made things much worse. We had IVIG in October, which led to major improvement, so I don't think the augmentin was much of a factor there. What I can tell you is that the augmentin isn't a silver bullet. Our son caught a sinus infection in early Jan that caused another symptom exacerbation (not as bad as pre-IVIG, but obvious) despite being on augmentin. We had to supplement the augmentin with a 5-day course of zithromax to kill it off. Hope that helps!

Hi, Michele: Our son has been homebound for most of the past 2 school years. However, shortly after IVIG (last Oct), he was able to attend for 3 weeks (until another sinus infection set him back in Jan... sigh). During that time, he managed to repress his vocal and motor tics during class. However, my wife said that he literally exploded with tics as soon as he got into the car after school. He's been able to "hold things in" during doctor appointments, too, but usually erupts with tics shortly afterward. So I think (much like with "classic" Tourettes?) the kids can suppress the tics temporarily with an immense act of will, but it builds up inside them as a result. Hope that helps!

My son is 12 and weighs around 95 pounds. Dr. K has him on 500 mg of augmentin daily (single dose). During "exposure risks" we double up the daily dose to 500 mg twice a day. Hope that helps!

Yeah, I came across this a few weeks ago and have to admit, a few key phrases in the Talk section lit my fuse. Here are a couple of salient examples: ...some of the treatment implications are dangerous and have really misled parents who are desperate to 1) deny the genetic component of TS and 2) seek a quick cure. ...dangerous unproven methodologies being employed by desperate parents who want to believe their child's tics were caused by a bacteria and can be cured by unproven methods. Long after the hypothesis is sorted, the damage to children will remain. Okay, I get the point that PANDAS is controversial, not proven to the satisfaction of the mainstream medical community, and that much more research is needed. But I take issue with the repeated comments about "desperate parents" who just want "a quick cure" and consequently are willing to endanger their children's health to get it. I know I'm a flawed, fallible parent... and I'd have to admit to being desperate. But my wife and I have been searching for any way to help our son for 2 years now. Quick fix? We've tried every doctor, every kind of specialist, traditional psych meds, therapy / CBT, sensory integration therapy, every supplement that seemed to offer some way to improve our son's condition. Frankly, other than antibiotics, steroid burst, and IVIG, nothing has helped. So the treatments that have actually helped our son are all "controversial and unproven" I suppose. And they all happen to revolve around infectious disease and immunology, consistent with the PANDAS hypothesis. On the "standard practice" advice of our local docs, we stopped antibiotic prophylaxis in June 2008. In August 2008, after a sinus infection, our son had his worst symptom explosion ever and has not regained the level of health he was at prior to that exacerbation. So it seems clear to us that following "standard practice" harmed our son substantially. So if we just follow the traditional medical advice (which we did for months after our son's original illness) - and if the PANDAS hypothesis is in fact correct, and each exacerbation causes further damage to our son's brain - then that unquestionably damages our child. I know this situation is brutal, and parents are placed in the awful position of having to weigh high-risk options on both sides, but I honestly don't know what else most of us can do. My son was begging us to kill him last August because he could not bear to live like that. We tried psych meds and they made things much, much worse. What else could we do to help him? And one other thing that bugs me: the comment about us desperate parents "deny(ing) the genetic component of TS". Neither my family nor my wife's has any history of Tourettes, OCD, or tics. Both sides of the family do, however, have history of autoimmune disorders. MS on my wife's side; I myself have Crohn's disease. So I have to say - based on my son's case history and family history - the denial seems to be on the "mainstream medical community" side. I realize that Wikipedia is trying to follow the same rigorous standards as the "offline" encyclopedias. They have to carefully vet all sources. But I think that Talk section displays some pretty clear biases that are based on studies that are out of date and have their own deficiencies. Sorry to ramble and vent so much. It's been a tough week.

Hi, y'all: I promised a number of folks an update on our son's 2nd round of IVIG, scheduled for yesterday and today locally but using Dr. K's protocol. Turns out, it got derailed early. About 2/3 of the way through Day 1, our son started feeling extremely dizzy, extremely weak, difficulty breathing. The nurse (understandably) stopped the Ig at that point and went to check with the "ordering doctor." That's when things fell apart. They had Dr. K on file as the ordering doctor and contacted him in Chicago. He told them he could not possibly be responsible for patient care from several hundred miles away, and that our local pediatric neuro should be in charge of administering the treatment. Our local ped neuro's office then made it clear that they did not agree with the treatment and had merely facilitated arranging the local IVIG under Dr. K's orders. So the infusion clinic nurse - sheepishly - explained that she had no ordering physician and could not proceed with any further IVIG. Day 2 was cancelled. We were taken to the ER for observation and discharged after our son's condition stabilized. Personally, I think the combo of IVIG and blood sugar issues caused the problem. Unlike in Chicago under Dr. K, the local facility told us our son could not eat anything before the procedure or until at least 2 hours into the infusion. Of course, the hospital food did not appeal to him, so he was starving (and upset about it). Guess we'll never know for sure. At this point, I guess we're probably done with IVIG. We can't afford another round in Chicago where we have to pay in full up-front. Plus, our son's reaction this time was a bit scary; not sure it's worth chancing it again. Have to admit, my wife and I are depressed. We had high hopes for Round 2, and Dr. K had been very optimistic. Maybe the 2/3 of 1st day's dose will help a little; I don't know. I hope others considering a 2nd round have better luck and avoid our "nobody's at the wheel" experience. Man, do I wish I had better news to share!

Ouch - this thread is physically painful to read, and I debated whether to even try to reply, since so many others have conveyed the essence of this nightmare so well. I'll just say this: I could see the brain storms coming, could see them engulf my poor son and swallow him up. It was like his mind was on fire. He was the sweetest, most mild-mannered, empathetic kid you'd ever hope to meet before this hit 2 years ago. After his 2nd symptom explosion in Aug 08, he literally destroyed our basement one day in an uncontrollable rage. As others have said eloquently: normal parenting rules don't apply when your child is suffering from a brain injury. In the early days - when his diagnosis was acute rheumatic fever with Sydenham's chorea, not PANDAS - I did not know how to deal with this and (since he had no OCD at that point and only motor tics and some emotional lability) I tried to be a "normal parent." That is, when he did not behave appropriately, I tried to punish him the way we would have before his illness (loss of privileges, etc.). Every time I tried it, it was a complete disaster. I learned the hard way that adding more stress to what these kids are already experiencing is a bad, bad idea. (And as others have said: I felt guilty as ###### afterward.) And yes, other people don't get it. The damage is inside the brain; it's not visible, like cancer after chemo or a degenerative neuromuscular disease. So - on top of everything else the child and family endure - they get no support from the community and may in fact get lots of grief. (I remember clearly the "that boy needs military school, not medication" line that made me want to punch somebody!!!) So remember what your healthy child was like and know that they're still trapped inside there somewhere. When I was spending most of my time on a Sydenham's forum, a mom there explained that they made up a name for the "monster in her daughter's head" and always attributed the nasty behaviors to that alter ego. Seemed like a pretty great idea to me at the time. Still does! Until your child heals, just try to minimize stress and insulate her with reassurance and affection. It's the best any parent can do in this kind of nightmare scenario!!!

Hi, Mary: I'm not aware of any correlation between titer levels and recovery time; titer levels vary so widely between children that I think only the trends (change from a particular child's "baseline") are useful to the docs generally. Dr. K told us that what he's seen correlate with longer recovery times post-IVIG are: patient age (10 or older heal more slowly), symptom severity, and time between original illness and start of effective treatment (e.g., IVIG / PEX or at least antibiotics).

This is fascinating - thanks for posting this! I see that this therapy has shown promise for treating Crohn's disease, too... and I happen to have Crohn's. This might help both my son and me!

Hi, Mary: Our son is older also (12) and had IVIG with Dr. K in early October. We saw significant improvement in the first 3 weeks and lots of scary symptoms improved dramatically or totally disappeared. However, we also experienced brand-new symptoms we had never seen before. Our son developed a new vocal tic (a severe, screeching one) about 6 weeks post-IVIG. It literally appeared from nowhere one morning and had grown severe by that evening. It hasn't gone away since. So - unfortunately - it does seem like residual autoimmune response even after IVIG can still cause new damage, and new symptoms, for awhile. We're trying a 2nd round of IVIG next week. We'll post our progress on the forum to let others know the results. Good luck with your son!

Hi, browneyesmom: OCD is not required to establish a diagnosis of PANDAS. My son was originally diagnosed with ARF with Sydenham's chorea in Summer 2007 because he had polyarthritis, motor tics / choreiform movements, and emotional lability but no OCD at all. Then he had a 2nd symptom explosion on 8/17/08 (after abx were discontinued per local doc) and overnight developed violent OCD contamination fears, suicidal talk, rages, crying jags, anorexia, urinary frequency, many of the "classic" PANDAS symptoms. It was totally different from the first go-round. I've since learned that this is not at all unusual for these kids. Each round of brain inflammation can attack a different portion of the basal ganglia, producing very different symptoms. That definitely does not rule out PANDAS! There's so much misinformation (and garbled info) about PANDAS out there. Don't let anybody tell you it's "not PANDAS" because of one "missing symptom"... and don't let anybody tell you that "PANDAS is bunk." Everyone on this forum can assure you otherwise. Trust your instincts, and your knowledge of your own child. They'll serve you (and her) well!

Hi, browneyesmom: That's the right guy, but that's a very old link. Here's a more current one with contact info: http://childstudycenter.yale.edu/faculty/leckman.html Hope this helps. Spoke with Dr. Leckman on the phone last August, and he seemed like a really great guy: caring, compassionate toward these kids and what they're going through. Best of luck!

Amy, thanks so much for sharing this. These are the stories that give the rest of us hope!!! Our son had IVIG with Dr. K just over 4 months ago. Our son is older (12 going on 13) and had very severe symptoms prior to IVIG, so Dr. K did warn us that the treatment might not be as effective or recovery as rapid for him. We also saw rapid improvement for first 3 weeks, slower improvement for next month, then progress stagnated at about 60-65%. First week of January, our son got a sinus infection, and things went backward. He's regained some of the ground he lost, but not all. Anyway, Dr. K has strongly recommended a 2nd round of IVIG, and we've scheduled it for next week (Feb 19 & 20). We're hoping this will finish the job, and Dr. K seems very optimistic. We'll share our progress in the coming weeks. Dr. K says that he learns from each patient, and the older ones in particular present new challenges. Amy, we are praying that we'll be able to share a wonderful success story like yours soon!!!

That's a good point, Michele. I've seen other posts on here from extremely frustrated parents who got good advice from Dr. K over the phone but had nobody local who would implement it. That's maddening! In our case, we were utterly overwhelmed by our son's August symptom explosion - much different and much more severe from his original, when he was diagnosed with ARF with Sydenham's chorea. After reviewing Dr. K's web site and having many eureka ("yeah, that's exactly what our son is experiencing") moments, we went for the phone consult. We were very lucky at the time to have a local DAN doctor who was open-minded and willing to consider input from experts. He agreed to prescribe the prednisone per Dr. K's advice for the steroid burst, as well as the augmentin. He was a great guy. Unfortunately, he died suddenly last October of a heart attack, so we don't have the luxury of relying on his help anymore. If you don't have an open-minded local doc, then I'd agree it makes things awfully tough. For us at the time, though (last August), just having validation from somebody who clearly understood this disorder and what it does to afflicted kids was a godsend. Best of luck, acdrobert!

Cool - I never heard of this before, and I live in Michigan. (Boy, is my face red... cherry red.) Thanks for the tip, Christie!

Hi, browneyesmom: Wow - all I can say is that your daughter's symptoms and rapid progression sound eerily similar to what we've experienced with our son (now 12, first became ill at 10). It sure sounds like classic PANDAS stuff. We have also struggled mightily with school. Our son was a great student until this hit; now, since his latest exacerbation after a recent sinus infection, we can't get him to do any real homework at all. Too fuzzy, can't focus, can't process what he reads. He's mostly been doing homebound instruction (if any) for the past 2 school years. I pray you have better luck for your daughter. I'd keep searching until you find a doctor who believes in PANDAS and is open-minded about how to treat it (at least willing to listen to your research or do his/her own research). That's crucial. Dr. Kovacevic (www.webpediatrics.com) is excellent, especially if you're in the Midwest (he's in Chicago); he does phone consults and will work with local doctors to coordinate treatment. Antibiotics are crucial, too. Have to warn you: our son was originally put on Amoxil for about a year, and it never seemed to eradicate the strep. His symptoms just smoldered, never really resolved. As soon as the local doc decided we should discontinue the abx, things went downhill, and our son soon had his worst symptom explosion ever. You might ask your doc to at least consider augmentin, and others on this forum have seen best results with zithromax. (We've been on both of these at different times in the past 6 months.) There are 3 or 4 others your doc can try if those don't work well. When you see the array of symptoms you described for your daughter, and they come on that fast out of nowhere, it sure sounds like PANDAS. Dr. K told us that "nothing else happens that fast with so many neuropsychiatric symptoms at once." One other thing we learned the hard way: be very, very cautious about psych meds if a doc urges you to try them. Ativan and zyprexa literally drove our son over the edge and made a bad situation much worse. Some psych meds really help some kids, I've heard, but it's prudent to ask the doc to start with the lowest possible dose and ramp up very slowly. Hang in there. With a good doc, good antibiotics, and some time, things should improve. There are options like IVIG and plasmapheresis if things get really rough. I think you'll find lots of good info (and lots of sympathy) on this forum! (It's been a sanity saver for my wife and me.)

Hi, Amy: Wow - there are a lot of nurses, psychologists, and healthcare pros on this forum! Makes me feel ignorant, because neither I nor my wife have any medical background (other than researching and reading like maniacs since this nightmare started). Anyway, I know what you mean about Dr. K's "phenotype" for PANDAS kids. Looks like he's rearranged his web site a bit, but here's the link to that section: http://www.webpediatrics.com/pandasclinica...Anchor-(5-28203 This was one of the things that struck home for me when I first found Dr. K's web site. His description of typical PANDAS symptoms and of the classic phenotype matched our situation perfectly. My wife is a former software engineer, so she fits the "mother of a child with PANDAS is highly intelligent, has a history of being good in math and with computers (computer-savvy)" bullet like a glove. From what I've seen on this forum, seems like many moms are in the medical profession, highly educated, and very, very smart! I don't know if my wife or I have any serious OCD tendencies - certainly nothing major - but I recall having some pretty bad perfectionism and major anxiety as a kid. I also happen to have an autoimmune disorder (Crohn's disease). I figure my son's vulnerability to PANDAS was probably inherited from my side of the family.

We've been working with Dr. K since our son's symptoms exploded in August of 08 (much worse than original bout). Dr. K clearly understands this illness better than anyone else we've seen... and we've seen a lot of doctors! He's given us hope. Here are a few threads on the forum that you might want to check out for more info on Dr. K (although he's mentioned on many more): http://www.latitudes.org/forums/index.php?...;hl=Dr\.+K http://www.latitudes.org/forums/index.php?...;hl=Dr\.+K Good luck, and hang in there. Finding the right doctor is half the battle!

Hi, Pat: We actually saw Dr. Chugani in March of 2008, when Cormac's symptoms were at their lowest level (waning-wise) over the past 2 years. At that time, Dr. C was conducting a PET scan study for kids with various neuropsychiatric symptoms and we were lucky enough to be accepted into the study. As you mentioned, Dr. C and his staff were the first neurologists we met who actually listened and took our case history seriously. I'll never forget when I told him about the local neuro who spent 10 minutes with my son and told us it was psychogenic: Dr. Chugani just should his head vigorously and said "No, no, no, no, no!" I was so excited and relieved to hear that!!! The PET scan ended up showing inflammation in Cormac's right basal ganglia, even though he was as close to symptom-free at that point as he has been since this all started. (Wonder what a scan would have shown in Summer of 2007 or 2008, when his brain was on fire?) Dr. C really impressed us. But his advice (since Cormac still had the ARF with Sydenham's Chorea diagnosis at that point) was to wait and see if he resolved over time, reserving IVIG as a last resort if things got bad. (And of course, in August 2008, things got incredibly bad.) He never actually mentioned PANDAS to us at that time, though, since Cormac had no OCD or Tourettes-style vocal tics or other "classic" PANDAS symptoms with his original illness. (He called it "transient dyskinesia.") He was awesome about personally contacting our local pediatric neurology dept (who had declined to see Cormac because of a horrible rheumatologist who labeled our son's illness as "not medical" after 2 minutes of observation. Arggghhh!!!!). After 6 months of waiting, we finally got an appointment with them thanks to Dr. C's intervention! We probably would have gone back to him after Cormac's August 08 symptom explosion, except we saw so many people posting about Dr. K for PANDAS, and Chicago is closer to us than Detroit. I hope you have similar good luck with Children's and Dr. Chugani's colleagues. Let us know how it goes! Who did you see? We saw Dr. Sivaswamy and she was wonderful - the first neurologist - or mainstream doctor, for that matter - who actually listened to me respectfully and with interest. She said that she had had a few PANDAS patients in the past but was not as experienced as Dr. Chugani who heads a research program for PANDAS and does spect scans as part of this program. He is the one I wanted to see in the first place, but they wouldn't give me an appt. until May. She said she would e-mail him today and try to get Gaby to be accepted into his program - or at least get a scan as soon as possible. Another thing she wanted to rule out, and this only because she felt that the symptoms sometimes look very similar to PANDAS is something called Hashimoto's encephalopathy which can be picked up with a simple blood test and has to do with a thyroid dysfunction. (also an autoimmune disorder). We had her blood drawn today and hopefully will find out one way or another in a couple of days. In the meantime, I am waiting to hear back about the scan. Did you ever see Dr. Chugani or did anyone suggest that to you? Pat

Hi, Pat: Not as severe for our son as for Gaby, but he's been "fuzzy" since he became ill. Trouble communicating, focusing, concentrating for any length of time. Since the sinus infection earlier this month triggered a worsening of symptoms, he sometimes just stops in the middle of a sentence - can't remember what he was talking about or finish what he was saying. He'll ask us to repeat things again and again when he's having a rough day. Before he got sick, he was very verbal, reading adult fiction novels, and doing great in school. Now he can't do any useful amount of homework and usually stops after a problem or two. Stuff he used to breeze through is just beyond him at the moment. We're praying it's temporary and will resolve with time as his brain injury heals. But it scares us... and I can tell it really scares him, too.

Hi, bmom: Yeah, that's the plan. We've already secured pre-approval from our health insurer (using diagnosis and procedure codes from Dr. K) and we see our local pediatric neurologist on Monday. We plan to beg her to schedule it locally (in-network doctor and hospital, etc.) and have a bunch of stuff to show her from Dr. K and other sources. We've only seen her once before, so I don't really know what to expect. Just have to hope she's open-minded enough to read Dr. K's summary and contact him and/or Dr. Leckman if she wants more info. If she declines to order IVIG for us, I don't know what we'll try next; maybe a referral to a local immunologist. (The local DAN doc who diagnosed our son originally passed away in October, so we don't have a "go-to doc" in our area anymore.) We'll definitely post results on the forum if we get the 2nd IVIG to let others know how it goes. Please wish us luck - we need a break right now!