Worried_Dad

Hi, bmom: My son had IVIG with Dr. K during the 1st week of October last year (coming up on 4 months). We've seen a lot of improvement - probably 60% overall - but his tics are the one area that has worsened since before IVIG. His motor tics are worse, and he developed a brand new vocal tic that has progressed from a bark to a shrill screech that makes us all cringe (despite our best efforts to ignore it or laugh it off, so he doesn't become more self-conscious about it). We've had a lot of bugs infect our family this Winter; our other 2 boys just keep bringing stuff home from daycare and school, new bug every week. We think these are a big part of the problem for our PANDAS son. A sinus infection 1st week of January hit him especially hard and caused all his symptoms to worsen. (He was on augmentin at the time, too, but we had to do a 5-day course of zithromax to clear the sinus infection.) Dr. K did suggest that the tics might indeed be "flipping the pages backward." Tics were among our son's very first symptoms in Spring of 2007. But Dr. K was surprised that the vocal tic emerged, worsened, and has not resolved for a couple of months now. Our son is 12, was sick for more than a year before IVIG, and had severe symptoms prior to IVIG, so Dr. K now believes he needs a 2nd round of IVIG to "finish the job." We're trying to get that scheduled through local docs. If you're seeing 80% improvement post-IVIG, I'd say your son is on his way to recovery. Have talked to other parents whose kids took 9-18 months to fully resolve after IVIG or PEX. (That's what we're hoping for as well!) Best of luck!!!

Hi, Pat: I'm so sorry you're going through this again! We can relate. Cormac caught some kind of infection that lodged in his sinuses 1st week of January, and that triggered a pretty major symptom exacerbation again - worst we've seen since before IVIG. Really broke our hearts. Local doc prescribed 5-day course of zithromax for the sinus infection (on top of the daily augmentin), and the zithro cleared the sinus infection. He's stabilized some since then, but we lost ground; his OCD and tics are much worse again, and his cognitive abilities are shot (can't focus on anything, spaces out in the middle of a sentence). He's been out of school again for 2+ weeks. So - from our experiences and yours - I think it's sad but true that our kids are still very, very vulnerable to anything that prods their immune system. It seems to trigger the autoimmune response, causes more basal ganglia inflammation, and aggravates their symptoms all over again. I guess I assumed the IVIG would at least minimize the risk of more damage... but seems like they're not out of the woods yet. I can tell you it's reassuring to talk to folks like Shira or Leslee whose kids have fully recovered, but say they still saw symptoms for quite some time after IVIG or PEX treatment (like a year or more). Hang in there! I think Gaby and Cormac are on the right road; it just twists a lot and goes through some long, dark tunnels.

Hi, Amy: I'd vote for "crank up the antibiotics." Our post-IVIG son was just exposed to something at school a week+ ago. Came home complaining of feeling hot, sweaty, nauseous. No obvious fever, but he continued to complain of feeling hot and nauseous. Two days later, he had his most severe emotional meltdown since before IVIG, and it happened again the next night as well. (On the positive side, these "symptom explosions" weren't as severe or long-lasting as before IVIG.) The school said no reported strep, so we don't know if it's that or just some other infection that triggered the autoimmune response. Took him to the local doc in a bit of a panic. They said a strep culture would be useless because he's on the prophylactic augmentin, which would distort the results. They just put him on a 5-day course of zithromax to supplement the augmentin. That seems to have killed the infection (which had lodged in his sinuses), but he hasn't fully recovered. Sigh.... So for us, I think, as soon as we see any sign of infection in him, we're gonna beg for zithro. Don't want to take any chances!

Hi, Darla: Per Dr. K, Dr. Swedo, and a pediatric neuro we saw last Spring, the consensus does seem to be that IVIG and plasmapheresis are serious procedures with some degree of risk and are reserved for patients with severe PANDAS symptoms. I'd still imagine it's a judgment call to be negotiated between the parents and the doc. In our case, our son's August symptom explosion completely crippled him and made him utterly miserable (suicidal talk that scared the heck out of us). We really felt like we had no choice but to try IVIG or PEX. Had a phone consult with Dr. K, and - based on our son's age and symptom severity - he agreed. Might be worth having the phone consult with Dr. K (if you haven't already) to see what he thinks. If you go down that route, it can certainly be expensive - cost depends largely on the amount of Ig you need, which is dependent on the child's weight. I'd guess you're talking in the range of $8000 - $12,000 if you have to pay it all yourself. (We were supposedly pre-approved by our insurance co... but had to pay up-front and are still waiting for reimbursement after 3 months. Argghhh!) What scared us the most, I guess, was a few articles I found on the web asserting that the brain damage from PANDAS is cumulative; beyond a certain point, according to these articles, the child's brain can't completely heal. Also, Dr. K had mentioned that many PANDAS kids improve over time on just abx, but they "don't get back to 100%." That's what we had experienced over the almost 2 years since our son became ill. IVIG and PEX are a tough choice: they're expensive and can be risky. Wish I had better advice, but I think it boils down to how well your child is doing with other treatments, and how badly their symptoms are interfering with a normal life. No easy answers, I fear. Best of luck!

Hi, Darla: Boy, that sure sounds like the same thing we experienced when our son became ill (Spring of 2007). And - interestingly enough - his symptoms started after a very high fever that was followed shortly thereafter by a sinus infection that wouldn't go away. You might suggest to your doc(s) that they order ASO titer and Anti-DNase B tests, although low results don't mean it isn't PANDAS. (Titers often lag symptoms by 6 weeks or more, and some kids just have low titers to begin with). There's also a "PANDAS panel" test available from NeuroScience that is supposed to be very useful ( https://www.neurorelief.com/index.php?optio...view&id=324 ). If you're seeing overnight explosions of symptoms (OCD, raging, tics, etc.), then there's a good possibility it's PANDAS. (Dr. K told us that "nothing else causes the one-day explosions of symptoms.") If the docs you're seeing dismiss this out of hand because they "don't believe in PANDAS," you might want to hunt for another doc. Antibiotics (including ongoing prophylaxis to prevent re-infection with strep) are crucial, and IVIG or plasma exchange might be worth considering if things aren't getting better (or are getting worse). We did IVIG in October after a year and a half of serious illness for our son, and it has made a big difference. We still have a ways to go, but things are way better than before IVIG. Best of luck... and if the answers you're getting don't make sense to you, keep looking for the right doctor!

Hi, greeneyes48072, and welcome! Wow, you did the right thing by doing online research. It took us many months - and MANY doc and specialist visits - to get a diagnosis. Our son's illness started with polyarthritis, then tremors and muscle weakness followed by seizure-like twitching episodes that evolved into motor tics. He was originally diagnosed with acute rheumatic fever with Sydenham's chorea, now with PANDAS instead of SC. Has the doc put your son on antibiotic prophylaxis to prevent further strep infections? From our own painful experience, this is key... and I'd recommend something stronger than just amoxil, which didn't work well for our son. Our local docs advised us to discontinue the prophylactic abx because it supposedly had "no proven benefit" for PANDAS... and within 2 months, our son had a violent explosion of PANDAS symptoms, far worse than the original. So keep your son on something like augmentin or omnicef or zithromax or keflex or something stronger than amoxil if you can. And when you mentioned that tenex and klonopin made things worse... again, from our own painful experience, I'd advise to be very cautious about any psych meds. A local psychiatrist prescribed ativan (a benzo like klonopin) and zyprexa (a neuroleptic) for our son, and they absolutely put him over the edge. We didn't realize how badly these meds were exacerbating his symptoms until Dr. Kovacevic (PANDAS expert in Chicago whom you'll see mentioned on this site a lot) warned us about the dangers and advised us to taper off of them. Within 2 days of discontinuing those meds, our son was immensely calmer and more rational. I have seen articles that indicate that SSRIs can be helpful for PANDAS kids, but in extremely small doses; normal doses make things worse. So if your doc wants to try something like that, make sure he starts with the lowest possible dose and increases very, very slowly to reach an optimum level. If your son reaches a point where PANDAS is really ruining his life (like was the case for our son), you might consider IVIG or plasmapheresis. These are serious procedures, but they've been shown to help kids with severe PANDAS when nothing else was working. Dr. K has good info about PANDAS and treatment options on his web site ( http://www.webpediatrics.com/pandas.html ) and responds promptly to e-mails. I hope your son heals quickly and fully, and that you get the answers you need from your docs very soon. Best of luck... and if any doc tells you that "PANDAS doesn't exist," look for a new doctor!

Hi, Jena: Our son (12) had IVIG with Dr. K in Chicago in early October. He was in the midst of an awful symptom exacerbation, so his OCD contamination fears made the logistics of the trip (hotel, etc.) very challenging. But overall, he did pretty well with the procedure. He was mostly bored and tired by the end (could not sit or lay down due to contamination fears, so he stood the whole time - 6-7 hours for 2 days in a row). We read and watched movies on a portable DVD player to pass the time. He had pretty serious nausea and headache both nights after the procedure, but he did not throw up or have a major fever. (Some kids do, I'm told.) Day 2 was easier than Day 1 since he "knew the drill" by that point. If your son's phobic about needles, then the IV insertion may cause some anxiety, but the nurses did a very good job in our case and minimized the discomfort. Our son was so miserable before IVIG that the hope of feeling better got him through the procedure, despite high anxiety levels. We just kept telling him "we have to do this so you can get well and get your life back," and that motivated him to overcome his fears. We didn't want to over-promise... but we were all so desperate for some hope that we probably did. Anyway, we did see rapid improvement for the first 3 weeks, and that encouraged our son. Hopefully your son will enjoy the same progress post-IVIG! (Since he's younger, he actually should progress faster.) I hope everything goes smoothly for you, and that the insurance company doesn't hassle you! We were also "pre-approved" for the procedure after we furnished the doctor, the surgical center, and all procedure codes ahead of time. Still had to pay up-front... and now after 3 months, we haven't seen a penny of reimbursement or been given a reason as to why our "pre-approved procedure" is not being covered. I hate our healthcare system!!!

Hi, all: Just wanted to share that - based on some of the posts here - we ordered a bottle of Kavinace and started our son on it a couple of weeks ago. He's come a long way since IVIG (10 weeks ago), but residual OCD and tics are still a challenge. We were hoping the Kavinace would help moderate these symptoms while he continues to heal. Anyway, we didn't notice as dramatic a change as some others have experienced, but the Kavinace does seem to help. Our son's OCD contamination fears have gotten noticeably milder, and the tics have diminished. They're not gone - still emerge when he's tired in the evening - but better. Thanks to those who posted about Kavinace. It helped!

Hi, bmom: Unfortunately, the vocal tic has not gone away (it's a shrill, high-pitched screech that frays all of our nerves when it hits). But it has diminished somewhat in the past week or two. The motor tics are rare; when he's very tired, they sometimes surface, but they're much milder and less frequent than when he first got sick.

Hi, Scrapmaxx: My son was first diagnosed in July of 2007. When we started antibiotics, we saw a sharp reduction in tics. His illness smoldered for about a year on amoxil, but the tics remained mild. When our local docs advised us to stop the abx, things went downhill pretty fast, and within a few months he had his worst, most violent explosion of PANDAS symptoms ever. The way it's been explained to us by folks like Dr. K, the antibiotics can hold the illness at bay but often don't allow a child to fully recover; they don't get back to 100% with abx alone. (That's what our son experienced, anyway.) If your son seems to do well with abx and supplements alone, that's great! We tried every dietary regimen and supplement on the market, but for our son, nothing really seemed to do the trick. And we, too, worried about the effect all the abx would have on our son's gastrointestinal system. It definitely caused problems in that area. That violent symptom explosion in August made us pretty desperate. We decided the potential benefits of IVIG outweighed the risks for our son (he was completely crippled and miserable), so we went down that path. But certainly if you can avoid the risk and expense of IVIG and stabilize your son's condition with abx and diet / supplements, that's a big win. We have been told by some docs that many kids seem to outgrow PANDAS after puberty, when their immune systems change in fundamental ways. How old is your son? If he's doing pretty well and isn't far from his teens, you may be on the home stretch. Good luck, and welcome!

Hi, Betty: We had IVIG with Dr. K in October. I believe his standard dose is 1.5 grams per kilogram of patient's body weight for each of 2 consecutive days. He uses Gamunex immune globulin. From what I've been told, at least, the higher dose for 2 straight days distinguishes his protocol from most others. When we went to Chicago, each day's IVIG procedure took about 6-7 hours from start to finish (counting prep time and flush with saline afterward). Dr. K appears to have a very high success rate. Our son has made great progress since the treatment, after a year and a half of pretty consistent, serious illness. You can always e-mail Dr. K directly (drk@webpediatrics.com) to confirm dosage, etc. He's very good about answering e-mails, even if you're not a patient yet. Good luck!

Hi, Amy: Our son had IVIG about 10 weeks ago (early October). He's doing much better than pre-IVIG, but he has also frequently complained of fatigue. Worse on some days than others... and probably related to sleep difficulties he still has to some extent (trouble staying asleep). In the evenings, he's usually run-down and symptoms worsen. We figure (or hope) that his body is working harder to heal the damage to his brain, and that's tiring him out. And bmom, hang in there! Our son is 12, so we got the same caution from Dr. K that recovery will take longer. After a month, we were probably at about 50%; at 10 weeks, I'd say we're now up to about 70-75%. Slow progress, but fairly steady (with minor ups and downs). Waiting is torture... but I believe our kids are on the road to recovery! Please let us know how things progress for your son: since both our boys in that older range, we'll be very interested to compare notes.

When we did this with our son (12), he was in the midst of the worst, most nightmarish explosion of PANDAS symptoms we've ever seen. Things were horrible! By the 2nd day of prednisone, we saw a huge improvement. Unfortunately, we only had 3-4 more days of relief before things went gradually downhill again. Confusing the issue, at that point our local psychiatrist had put him on two psych meds (ativan and zyprexa) that we later learned from Dr. K were known to put many PANDAS kids "over the edge." When we tapered off the psych meds, things improved dramatically again. So we believe that the steroid burst improvement would have lasted longer if we hadn't been on the psych meds... but guess we'll never know for sure. Good luck!

Hi, Linda: This is just one (non-medical person's) perspective... but I'd say that prophylactic antibiotics are critical for these PANDAS children. Our son was on amoxil for almost a year: during that time, his symptoms smoldered, waxed and waned, but no major explosions. Then our local docs advised us to stop the antibiotic because it had "no proven benefit" for PANDAS. Within a month, things went downhill, and then we had an overnight explosion of OCD and emotional lability that was way worse than anything we'd experienced before that! Like you, we do probiotics to try to counteract the abx (augmentin now for us). After the nightmare we went through after stopping the abx, though, we're very careful to make sure our son gets his augmentin every day. Hope that helps. Good luck!

Michele, you're not ranting. You're venting... and we all know that you have every right to do that, to relieve the pressure! We saw the same pattern you're describing with our son. Non-strep illnesses also triggered symptom exacerbations, I assume because it stimulates the immune response, which leads to more basal ganglia inflammation. We saw the same "time lag" you describe: PANDAS symptoms didn't explode immediately, but a few days after the non-strep illness. And just like you said, every flare-up gets worse, and the recovery isn't as complete afterward. That's one of the main reasons we opted for IVIG - just felt like we were losing a little more of our son with each flare-up. Since IVIG, we've had a bunch of bugs come through the family (we have 2 other kids who bring stuff home for school / daycare), but our ds has had much milder flare-ups and quicker recoveries. Hopeful sign! Hang in there... and try other docs if the ones you're seeing aren't taking this seriously. We went through a LOT of different docs before we found a couple who "get it" and keep an open mind. Shouldn't be this hard to get help for sick children... but I guess it is when it comes to PANDAS. Good luck!!!

I'd personally recommend something other than straight amoxil. Our son was on that for many months, and his illness just seemed to smolder the whole time. As soon as we discontinued it (per doc's advice), the PANDAS came storming back worse than ever. I've read a number of articles that indicate that straight amoxicillin is no longer effective against some kinds of strep. Dr. K prescribes augmentin - amoxicillin "augmented" with clavulanate potassium - which is supposed to be very good at breaking down the enzymes believed to be responsible for antibiotic resistance in many bacteria. I've seen other posters recommend keflex, but we haven't tried that one. Good luck, Indigo!

Hi, y'all: Our son (12) had IVIG at the same time as Pat's daughter there in Chicago with Dr. K. Overall, things are much better than they were before IVIG... but he was in the worst shape ever at that point. I'd say we're about 60% back to where he was before this whole nightmare started. In the past 2 weeks, though, progress has slowed to a crawl, and things have regressed in a few areas. The OCD contamination fears are still pretty severe, and this really interferes with "normal" activities. More worrying, he developed a brand-new symptom - a shrill, high-pitched, Tourette's style bark that has evolved into a screech - that showed up 2 weeks ago and hasn't gone away. These are the biggest problems for him right now as we try to get him back to school for the 1st time in a year and a half. On the positive side: anorexia is completely gone and he's eating like a horse now. No more violent emotional outbursts or crying jags. No more suicidal talk. His general mood and attitude are much improved, and he smiles, laughs, and jokes more than he has in a very long time. So, for our son, the IVIG has made a big difference... but we haven't come as far, as fast as we had hoped based on Dr. K's initial expectations. Diana has shared some post-IVIG success stories with us where it took 6-12 months for kids to fully recover, so we're trying to stay positive. But, sometimes, that's really hard. Seems like we've been "waiting for recovery" forever (counting the pre-IVIG months that dragged on and on). Hope to share better news someday soon. That would be the best Christmas gift ever!!!

Sleep has been one of our biggest problems from the beginning. Originally, we tried all kinds of prescription meds (ambien, sonata, valium, etc.), and none of these helped at all. (Had some nasty side effects for our son, too.) Finally, our local DAN doc prescribed desyrel (anti-depressant used off-label for insomnia) in combination with melatonin; that finally stabilized our son's sleep cycle and gave him (and us) some relief! Over time, the desyrel became ineffective, so we had to keep increasing dosage. Finally, last summer, we decided to discontinue it (were worried about side effects at higher doses). But then he couldn't sleep at all, so we tried benedryl along with one ibuprofen PM (to help reduce inflammation). Also tried an herbal sleep supplement called Somulin. Since we stopped the desyrel, here's the nightly combo that has allowed our son to get to sleep at a decent time most nights. 1) 2 somulin capsules 2) 1 melatonin tablet (5 mg) 3) 2 benedryl (25 mg tablets) 4) 1 ibuprofen PM (200 mg - occasional) BTW, how bad is it for us to be using the 200 mg of ibuprofen? Should we discontinue that for safety's sake?

Hi, bmom: Our son showed major improvement over the 1st 3 weeks after IVIG... but things were really bad for him before IVIG, so that may be part of the reason why the progress was so obvious. After Week 3, progress slowed down, and we've had more "bumps." But the bumps have not been as severe or as long-lasting as they were before IVIG. Somebody (might have been Pat or Diana?) explained in another post that the initial infusion of Ig really jump-starts things for 2-3 weeks, then it loses steam and the child's own immune system has to re-learn how to regulate its immune response properly. I think Pat and Diana experienced this pattern with their kids, too: big improvement for 2-3 weeks, then a rough patch, followed by more gradual progress. Hope that helps. Does seem like improvement is slower than the "best-case" predictions we heard before the procedure, especially for kids older than 10. Hang in there, and keep us posted!

Wow, peglem - our experience was just like yours! We went through an endless procession of docs, and the MDs were mostly just frustrating. Would look at our son's twitching for a few minutes, ignore the other symptoms (fevers, polyarthritis / arthralgia), then tell us his problem "wasn't medical." SOOOOO maddening, when you know something is terribly wrong with your child and can't get anybody to take it seriously or consider all the symptoms. We finally had a friend at work who hooked us up with a great DO about 50 minutes away (DAN! doc and certified Lyme specialist). He was very open-minded, listened, considered all the symptoms, and told us he was absolutely certain that some infectious or toxic agent was causing our son's symptoms. What a massive relief after being blown off repeatedly, often after a 6-8 week wait to see a new "specialist"! He was open to following Dr. K's suggestions as well, which made initial steps easier. Unfortunately, this awesome doctor passed away a few weeks ago of a heart attack, so we don't really have a local doc anymore. Michele, I posted you our details with Dr. K a while back, but here's an update. I do believe Dr. K can be that "last stop" for you. He's smart, extremely knowledgeable about PANDAS, and very compassionate toward these kids and their suffering. He's been right about almost everything he's told us so far. If Dr. K has one flaw, it might be that he's a bit overly optimistic sometimes when he predicts how quickly kids will recover post-IVIG. His intentions are good - he really wants to help these kids and see them regain their lives - but his natural optimism can cause some parental stress if things don't progress as rapidly as predicted. Our son is far better than he was pre-IVIG, but he still has a long way to go before he's fully recovered. Dr. K has been reassuring, though: given our son's age (12), he expects healing to take longer. So as far as our son's condition goes right now: we're on week 8 post-IVIG, and this week has been kinda rough. Our other 2 boys (8 and 2) keep bringing bugs home from school / daycare, and every infection seems to kick Cormac's immune system up a notch and triggers a minor symptom exacerbation. A few days ago, our son suddenly developed "instant Tourette's": in addition to tics / twitches, he started a high-pitched barking vocal tic. In one day, it went from nonexistent to him barking several times a minute, with bursts of 8-10 barks. He's got a good attitude about it and jokes about it with us... but I have to admit, it discouraged me. Seems like we've probably got a few months before we'll see our son get back to 90-95%. Hope that helps. We've been very impressed by Dr. K, he has helped us a lot so far, and our son is definitely much better off than pre-IVIG. The road to recovery is just longer - and bumpier - than we initially hoped. Sigh.... Hope everybody has a nice Thanksgiving. Keep the faith!!!

Hi, Colleen: Sorry I didn't post sooner. Think you and I traded posts on a different thread, but I lost track of this one. Anyway, as others have said, my son is 12 and we just did IVIG 6 weeks ago with Dr. K in Chicago. Overall, we've seen major improvement over where we were pre-IVIG, when things were just awful. We still have a long way to go for "full conversion," but we're way better off today than we were before IVIG. The slower rate of progress (with occasional bumps in the road) isn't unusual for kids over 10, from what Dr. K (and others) told us. And yes, we too were warned that IVIG may not be effective when puberty starts in earnest. That's why we decided not to delay. So I would just share that IVIG has turned out well for my son so far. He's made lots of progress and is a far happier, calmer kid than he was before the procedure. We just haven't quite reached that magic moment when he's 80-90% back to where he was before this whole nightmare began (spring of 2007 for us). For us, the OCD symptoms are the last hurdle, but most everything else has resolved (or mostly resolved). Hope that helps, and best of luck!

Hi, Michele: We found out about Dr. K on this forum back in August, when we were pretty desperate to find someone who had more experience with this disorder. Our son had been sick for more than a year, but August 17 marked a symptom explosion far worse than anything we'd seen before. I traded a couple of e-mails with Dr. K, and he thought it sounded like classic PANDAS. He offered the phone consult as an option, so I scheduled it with his senior secretary. During the phone consult, he reviewed our son's case history, asked lots of questions, and impressed us with his accurate prediction of symptoms and trends we had observed. He discussed treatment options - including IVIG - and recommended we try the steroid burst as a diagnostic tool to "confirm the PANDAS diagnosis." We worked with our local doc (very open-minded guy) to get the prednisone prescription per Dr. K's advice and did the burst. Sure enough, we saw major improvement and let Dr. K know. Also had our local doc order another throat culture, ASO titer, and Anti-DNAse B per Dr. K's request and e-mailed him the numbers. At that point, Dr. K felt highly confident that our son had PANDAS and felt that IVIG would have a good chance of success for him. Since our son is 12 (close that that puberty point after which IVIG doesn't always work well), and his symptoms were so awful, we felt like we had to move forward with IVIG quickly. (Back in March, during a "waning period," a pediatric neurologist had also told us that IVIG was the best option if things got worse and said he had seen success with kids with similar symptoms. He wasn't a "PANDAS guy" though, and primarily treated kids with Tourette's and movement disorders... and he's about the same distance away from us as Dr. K. We worked with him as part of a research study that provided a free PET scan, which confirmed inflammation in our son's basal ganglia.) We did provide Dr. K's contact info (phone, e-mail) to our local docs. Not sure if they ever contacted him, but they cooperated with his requests for tests and prescriptions (thank goodness!). So until we got to Chicago for the actual IVIG, Dr. K didn't charge us anything except the $300 for that initial phone consult. And he continued to answer e-mail questions very promptly, before and after IVIG. Hope that helps. If our local doc had not been so cooperative, I'm not sure what we would have done. Might have been tough to get Dr. K to call in prescriptions and order tests from out of state, especially when he had not yet examined our son in person.

Hi, Amy: Hang in there - believe me, folks on this forum can totally sympathize and understand how traumatic this is for the PANDAS child and their entire family! This past August and September were definitely the worst months of my family's collective life. Our 12-year-old son woke up with an overnight explosion of PANDAS symptoms, like he was possessed. The next 6 weeks were just plain nightmarish and drained my wife and I completely. We felt like we were losing our son, didn't know how we'd keep him out of the hospital and hold our family together. We started working with Dr. K, and that gave us hope. Steroid burst worked well: gave us about 5 days of blessed relief. Weaning off psych meds (per Dr. K advice) improved things again. We had IVIG with Dr. K in early October, and we've seen HUGE improvements since then. Due to our son's age and symptom severity, we still have a ways to go, but he's immensely better than he was before IVIG. We have a healthy family life again and can laugh, smile, and joke together. Our son is more himself than we've seen in a long, long time! We've heard other IVIG / Dr. K success stories and really believe that this treatment offers hope when PANDAS kids get to that "desperation stage" of illness. Here's hoping that you're telling your own success story post-IVIG on this forum in the not-too-distant future! Best of luck!!!

Hi, Pat: Hang in there - I really believe we're on the right road, but it's got some potholes in it! Here's an update on our son's progress. Again, I want to preface by saying that because of his age (12) and the severity of his symptoms, Dr. K was very honest with us up-front and told us his recovery will likely take longer than average. That being said: we saw steady progress for about 3 weeks post-IVIG, then hit a rough patch during week 4 when we saw a reappearance of our son's earliest symptoms. These included twitching / tics, muscle weakness, difficulty walking, headaches, and the joint and back pains that originally led to a diagnosis of rheumatic fever. Not as severe or as constant as back in Summer of 2007, but much more pronounced than we'd seen in many months. This seemed like classic "turning the pages backward" stuff, just as Dr. K told us to expect. During that rough patch in Week 4, the OCD improvements seemed to stagnate, and our son had 4 brief "panic attacks" for no reason he could explain (no obvious trigger that we saw, either). They lasted less than an hour, but during that time, his OCD got noticeably worse. Now we just finished Week 5, and it went much better. No more panic attacks, and some gradual improvement in OCD. His anorexia is completely gone now - he eats more than Mom & Dad combined and has gained 8-9 pounds back since pre-IVIG! The most wonderful, visible sign of recovery, though, is his mood. He's laughing and joking again, playing with his younger brothers more, and smiling more openly. We still have a long way to go before the OCD has lost its grip on him... but we're seeing definite signs of recovery! (Last 2 nights, he's slept much better / longer, too. We're hoping that the combo of more food and more sleep mean his body has a chance to heal.) Spoke with Diana, too, and she and I have both talked with Dr. K (as well as some former Dr. K patients / parents who are now success stories). Based on that - and what we're seeing - and our son's age - here's what we're thinking now. It will probably take 6-8 weeks at least before we get to that magic moment where our son is back to 80-90% of himself. Even then, it will probably take another 6-9 months before his brain heals completely and we realize the PANDAS is really, truly gone. If it's sooner, great, but we're figuring we're going to have to be patient... again. From what the "success story" folks have said, it will happen, and it's worth the wait! We're just praying that it works out that well for our son, eventually. Hope that helps, y'all. Good luck to everybody - our kids deserve a break!!!

Hi, Linda: I'm afraid that our steroid burst results were tainted somewhat, because our local psychiatrist had just prescribed a couple of psych meds (ativan, zyprexa) that made everything worse right before we started the prednisone. And even though twitching / tics were one of the most severe of our son's original symptoms in June of 2007, we had not been seeing much of that with this latest symptom explosion. So - for what it's worth - here's what we saw. The main symptoms before starting the burst were OCD, emotional lability, anorexia, separation anxiety. For 4-5 days during the prednisone, all of these symptoms improved dramatically. We did not notice a change (increase or decrease) in the tics, but they were minor at that time compared to the other stuff. After those 4-5 great days, things steadily went downhill again (but we were still on the psych meds). We were getting pretty desperate and frightened about how we'd even manage the trip to Chicago for IVIG. Dr. K warned us via e-mail that he'd seen psych meds like these (ativan, neuroleptics like zyprexa and haldol) put PANDAS kids "over the edge" and he advised us to taper off these meds before IVIG. We did that. Within 2 days of discontinuing the meds, our son's symptom's improved dramatically again, especially the scariest stuff: the rages, the hour-long crying jags, the suicidal talk completely vanished, and he stopped pacing non-stop all day long. What a relief!!! So - unfortunately - the effect of the psych meds really makes it hard for us to assess the full effect of the prednisone. What we can say with confidence is that, for our son, the steroid burst made his symptoms much milder for a short period of time and we did not see an increase in tics / twitching. If we had not been on the psych meds, we believe that the steroid burst improvement would have lasted longer (but that's just a guess). Hope that helps. Wish we had better, more clear-cut info to share!