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Worried_Dad

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Everything posted by Worried_Dad

  1. We've definitely seen our son's symptoms worsen significantly when any kind of viral or bacterial infection made its way through our household. I know others on this forum have posted similar experiences as well. Unfortunately, seems like anything that stimulates these kids' immune systems causes big problems!
  2. Hi, Pat (and everybody): Per our local doc's recommendation, we had the BodyBio "Kennedy-Krieger Fatty Acid Analysis" test (the Lorenzo's Oil test, for anybody who saw the movie) when our son first got sick. About $600 and not covered by insurance, but we were desperate to figure out what was happening. In our son's case, this didn't show heavy metal buildup but rather too little of the "good" metals, like selenium, magnesium, zinc, chromium, etc. Our son has been a vegetarian for a while (since well before his illness, for "personal moral choice" reasons), so he was low in a lot of key areas (like B vitamins / B-12) that have been linked to nervous system function. So we've always wondered if his vegetarian diet contributed to his illness or made him more vulnerable. Guess we'll never know. Regardless, he refuses to eat any meat on moral grounds (although he will eat dairy and eggs). Nothing's easy or clear-cut about this illness, is it? In any event, our son's flare-ups were dramatically different, too. Originally his symptoms were more classic rheumatic fever / Sydenham's chorea: polyarthritis, seizure-like twitching episodes, muscle weakness, difficulty walking, mild emotional lability. This past August, he woke up with an overnight explosion of "classic PANDAS" symptoms: violent OCD (contamination fears), anorexia, separation anxiety, urinary frequency, angry outbursts, crying jags, suicidal talk, wildly dilated pupils. Original symptoms and recent symptoms were radically different. Like Pat said, we assumed that different areas of the brain / basal ganglia were being affected during different waxing periods. I have no medical background, so I don't understand the details, but it makes sense conceptually to a "civilian." (Although after what we all go through as families during relapses, I guess we're more like untrained soldiers in a war zone.) When I read about the different symptoms that these kids experience, I have to say that at one time or another Gaby has experienced all of them. The interesting thing with PANDAS is that with each episode it could be very different because the antibodies vie for the receptor sites in the brain and if they happen to hit a lot of the ones that have to do with emotion, then you get a lot more of the anger and sadness. The first time that Gaby had this (1 year ago) it was extremely scary because we didn't know what was going on - she had a horrible virus with a fever lasting a week and all symptoms of strep throat (although she tested neg on both rapid and long tests) within a week she was having trouble falling asleep and then stayijng asleep. She would wake up every night for several hours and draw in the air, mouth words to herself, talk about bad dreams and thoughts. During that time she was very paranoid about her twin sister - accused her of making her food taste bad, or making her itch. She had a lot of sensory issues at that time, like bad smells, bad tastes, itching, etc. She flew into rages about just about anything - if you were looking at her she would suddenly open her eyes wide and accuse you of being mean to her. The rages went on for a couple of months, along with blank stares, decreased attention, blinking, squinting, funny hand movements. All this lasted about 6 months, but within that time it gradually very slowly got better and disappeared end of April, then she started again in August (in between she had been diagnosed twice with strep and treated with antibiotics) However, when she started in August, it was very different from the first episode - none of the angry outbursts, none of the paranoia, none of the sensory issues, but a lot of blank stares, blinking, hand movements, decreased attention span. - mild in comparison to the first time. So I don't believe it always gets worse - it gets different, for sure, but randomly depending on the receptor sites in the brain that are hit. She apologizes a lot and is very judgemental about the actions of others, which sounds a little like what some of the other mothers here are saying - how their kids will insist on doing things a certain way in school and will criticize others for not doing them the same. Gaby had IVIG 4 1/2 weeks ago and had 80% improvement in symptoms for the first 2 weeks, but has gradually slid back down to how she was just before IVIG. She has been on proph abx (augmentin) but I don't know if its not effective for her (some people say azythromycin is better) or if its just a long slow process of the damaged neurons healing themselves. Her doc is out of town right now - am waiting to hear what he thinks when he gets back. Right now her symptoms are such that I can live with it (other than the fact that we wake up every night with her and that academically she is not up to snuff because she can't concentrate well). I am curious about how many kids on these forums have been checked for heavy metals. It seems that quite a few on here have tested high (which Gaby has) and I wonder if this doesn't influence the impaired immune system that they have. Pat
  3. Hi, Diana: Thanks for the reality check. Yeah, after almost 2 years of our son being very ill, I guess it's unrealistic to expect a "miracle recovery" in a month. I'm very glad to hear that Garrett's still doing well overall, and it's comforting to know that we're all seeing a similar pattern. We were just a bit paranoid because of our son's age and proximity to puberty... puts him at higher risk of not responding to the IVIG. So... sigh... guess we just have to reconcile ourselves to waiting and hoping. We're just really praying we can get Cormac back to school (he's been either out or homebound for a year and a half). But - to Diana's point - we can see a big difference in our son post-IVIG. Even though he's still having problems, he's much more "there" than he's been for quite some time. And Kelly, thanks for the scoop on Dr. K being in Europe. I wondered if he was abroad, because he's always responded to e-mails incredibly promptly in the past. Guess I need to be patient with my e-mail, too! Take care, y'all, and thanks for the update, Diana! P.S.: heard much from the Yale folks of late?
  4. Hi, y'all: This may not be applicable to others' situations, but we discovered the hard way that the psych meds prescribed by our local (ex-) psychiatrist (ativan and zyprexa) were making the rages, hyperactivity, and violent outbursts much, much worse. Dr. K warned us about this and recommended we taper him off before our trip to Chicago for IVIG. A few days after we tapered off these meds, our son was a totally different kid: much calmer, much more rational, a HUGE stress reduction on the whole family! He still has angry outbursts sometimes - and did in the past - but they're extremely mild and brief compared to what we saw while he was on those particular psych meds. We're going to avoid those types of meds like the plague in the future, just from pure paranoia. (I've read that SSRIs in small doses can be beneficial to PANDAS kids, but we're too scared to contemplate more meds after 6 weeks of torment.) Don't know if that's at all relevant for others, but wanted to share our own painful experience. Good luck, Amy!
  5. Wow - sounds like we're all experiencing a similar "hiccup" post-IVIG! Our son had IVIG the same time as Pat's daughter. We also saw steady improvement for almost 3 weeks, then we suddenly hit a "rough patch" during Week 4. The OCD improvement plateaued, and some of his earliest symptoms from a year ago (twitching / tics, muscle weakness, difficulty walking, headaches, difficulty concentrating) reappeared and persisted during that week. He also had about 4 severe panic attacks that hit out of nowhere: one minute fine, next minute hyperventilating and totally stressed out. During these attacks, the OCD symptoms temporarily worsened dramatically. They lasted less than an hour, but they were scary and a bit discouraging. When I asked our son what made him so anxious, he said he had no idea - pure basal ganglia issue, I guess. He seems to be gaining ground again this week (Week 5) and doing better. Overall, we're still MUCH better off than before IVIG (when he was completely crippled by OCD) but haven't gotten back to that 90+% mark we've been hoping for. I shot an e-mail update to Dr. K and am waiting to hear whether this pattern is familiar to him. (Due to our son's age - 12 - and the severity of his symptoms, Dr. K forewarned us that his complete recovery would likely take longer.) Don't know if this is tied to an infection going through our family. We have a 2-year-old in daycare and an 8-year-old in school, both bringing various colds and coughs home. We've all had a bit of a cold during the past week or two. Maybe this kicked his immune response up a notch? EAMom (or Diana, if you're reading this), what's up with Garrett? Is he experiencing something similar? PANDAS is just so damned slippery and frustrating. Every time we seem to be seeing progress, we hit a speed bump (or a wall). I'm still optimistic about the IVIG - several other docs recommended this as the right option if things got rough - but it appears the healing process will take longer than we'd hoped. Pat and Diana, here's hoping these are temporary setbacks for all of our kids... and that we're celebrating their full recovery in the near future! (And sharing the good news with others on this forum!!!)
  6. The doc who finally diagnosed our son initially suspected Lyme disease, too. (He was a certified Lyme specialist.) The original Lyme blood test was "indeterminate" - slightly above the positive level. When the ASO titer came back off the scale, though, he diagnosed our son with acute rheumatic fever with Sydenham's chorea. Later, PANDAS instead of SC. I remember looking at the list of symptoms associated with Lyme and going "wow, this fits perfectly with what we're seeing." There is a LOT of symptom overlap between SC / PANDAS and Lyme, for sure. But our son's OCD explosion overnight back in August seems to lock the PANDAS diagnosis. Dr. K told us that nothing else he's ever seen comes on that fast and furious with those specific symptoms. Hope you get a definitive answer, Sarah!
  7. Hi, Linda: Over the past 3 weeks since IVIG, we've seen major improvement. OCD much milder, anorexia completely gone, and his mood and personality are much closer to the pre-illness days. We still have a long way to go, though, and that's not surprising. Based on our son's "advanced age" (12) and severity of symptoms, Dr. K forewarned us that it would probably take longer than average to fully resolve. We have (again, per Dr. K's expectation) seen recurrence of some symptoms from the early days of our son's illness. In the past few days, he's been having much more trouble with muscle weakness, difficulty walking, and twitching / tics. Haven't seen these symptoms much for many months, so we're taking this as a positive sign of progress: Dr. K's classic "flipping the pages backward" phenomenon that he's observed in so many of these PANDAS kids post-IVIG. We're definitely glad we went ahead with IVIG. It's already made a big difference, and it gives us hope. Hope to share even better news in the near future!!!
  8. Hi, Mary: Yep, Dr. K had our son do the standard 2 days of IVIG, but the amount is directly tied to the child's body weight, so he had a larger quantity than Pat's daughter, who had IVIG on the same 2 days (but is much younger). We've seen definite, unquestionable improvement in almost every area but still have a way to go. Our son's OCD symptoms were very severe, and his age (12) puts him at the upper limit of effectiveness for IVIG. So we pretty much expect everything to take longer. In the last few days, we've hit a bit of a plateau. The OCD has kind of leveled off, with no big improvements for a few days, and his original neuro symptoms (muscle weakness, difficulty walking, tics) have returned. Hadn't seen the weakness and twitching in quite a few months, but that's a classic example of the "flipping the pages backward" phenomenon about which Dr. K forewarned us. So we're still very optimistic, but not yet out of the woods. Our son's mood and personality are much closer to his pre-illness self, but the OCD is still a bit disabling at this point. We're just praying like crazy that the progress continues and we see that magical "conversion" moment. Feels like we've been fighting this forever, and if IVIG doesn't work, I don't know what we'll try next. No matter what, I'm glad we did IVIG. It's definitely helped so far, and it gives us hope. We'll keep y'all posted!
  9. Hi, galien407: Per Dr. K, we did a 5-day prednisone burst for our 12-year-old son. Saw improvement almost immediately, but it only lasted about 4-5 days. (Mostly that was because our psychiatrist prescribed a couple of psych meds just before our phone consult with Dr. K that completely put him over the edge.) With the older kids - like your son and ours - I think it's common for the steroid burst and IVIG treatments to take longer to show results and to work more slowly. Hope you do see improvement soon. If the steroid burst helps, then Dr. K has found a high correlation with successful IVIG. Good luck!
  10. Yes, we had an MRI in the early days of our son's illness, when the most serious symptoms were seizure-like twitching episodes, muscle weakness, difficulty walking. The MRI was "unremarkable" but not clear because of his "artifact" (twitching during the procedure). We were part of a PET scan study in March of this year, and that showed inflammation in our son's right basal ganglia. As far as what kind of doctor: as EAMom said, I think the most important thing is to find somebody who's open-minded, listens, and considers all the evidence. We went through endless frustration with rheumatologists and neurologists who decided within 5 minutes of examining our son that his symptoms were "psychogenic," despite the high fever and arthritis-like symptoms and ongoing fever spikes. Made us SO mad! Then we found a general practitioner who specializes in infectious diseases like Lyme but also practices complementary medicine, and he believed from the start that there was a viral or bacterial agent involved. Also were lucky enough to find a wonderful neuropsychologist who said "psychogenic? that doesn't make sense" and helped us overcome that knee-jerk diagnosis. So those 2 open-minded docs (GP and neuropsych) together gave us hope, kept open minds, and the GP ordered a series of blood tests that included ASO titer, which came back off the scale. He diagnosed my son (originally with acute rheumatic fever with Sydenham's chorea, later PANDAS instead of SC) and helped us understand what we were dealing with. So for this type of illness, I totally agree that the most important thing is finding a doctor who doesn't dismiss PANDAS (and your child's physical as well as psych symptoms) out of hand. For us, at least, that wasn't easy to find... but it made all the difference in the world! And so far, Dr. K in Chicago has been WONDERFUL in that regard. Hope that helps, and best of luck. Don't give up until you find that "right" doctor who appreciates what your child is going through and takes ALL the symptoms seriously!!!
  11. Hi, bmom: The weird thing for us is that our son's initial symptoms (when he was diagnosed with Sydenham's) were very different from this latest round. A year ago, he had major "sensory defensiveness" issues - sensitivity to light, smells, tastes, touch - but these gradually diminished during the year he was on prophylactic antibiotics. Light sensitivity has been the most persistent. He also had major movement disorder issues, seizure-like episodes and a wild assortment of tics, difficulty walking, muscle weakness, etc. The symptom explosion in August was totally different. Massive OCD, anorexia, separation anxiety, depression, suicidal talk... hardly any tics (only when extremely tired or agitated, and we suspect much of that was due to the ativan our psychiatrist prescribed). His original sensitivity to smell, taste, and touch didn't reappear, and the light sensitivity didn't seem to worsen. Still, it's definitely true that he seems far calmer now, with no "nervous twitching" or tics. Also, he's now willing to go outside in bright sunlight to take walks, etc., which he resisted in the past. So thinking about it, I'd say that he seems to have improved in both areas since the IVIG. As far as our other 2 boys go... neither have displayed anything obviously in the PANDAS spectrum that we've observed. Have to admit, though, we're kinda paranoid now. When my middle son (8) pitches a fit or overreacts to something, I catch myself wondering "does he have it, too, only milder"? I think the other boys are pretty normal - with the occasional emotional meltdown or tantrum that all kids have - but can't keep myself from worrying sometimes. Hope that helps. Best of luck to you and your son!!!
  12. Hi, y'all: Sorry I haven't posted a specific update about my son's progress (posted a few brief updates spread across other threads). My son had IVIG at the same time as Pat's daughter, but he is older (12), so Dr. K cautioned us that his "full conversion" will probably take longer. That being said... so far, so good! Our son's general mood, behavior, cognition, and OCD / separation anxiety / anorexia symptoms have all improved steadily over the past 2 weeks!!! The other morning I asked him how he felt, and he actually said "great." Haven't heard THAT from him in about 2 years! I guess my wife and I are a bit gun-shy (due to the previous "waning periods" when we thought he had turned the corner on this thing), but we can't help but be cautiously optimistic. He still has a long way to go before he's 100% - not surprising after such a long period of illness - but when I think about where we were a month ago (before Dr. K had us do the prednisone burst and discontinue the nasty psych meds), the progress is AMAZING! Interestingly, we had some insomnia issues with our son just as Pat described for Gaby. When our son 1st became ill in 2007, insomnia was one of his major and most crippling symptoms; he pulled all-nighters a couple of times a week. For the 1st time in months he had a sleepless night last Friday. Dr. K reassured us that (as we suspected) this was the "flipping the pages in reverse" phenomenon he's seen in so many of the PANDAS kids after IVIG. We're resuming melatonin and haven't had another occurrence since Friday. So in a nutshell: our son has made major progress since IVIG 2 weeks ago, but we still have a ways to go before he's "himself" again. We'll keep you posted!
  13. Our son was initially diagnosed with acute rheumatic fever with Sydenham's chorea, and his original symptoms fit the ARF / SC pattern better than classic PANDAS. At that time, he complained of a headache almost constantly for many months. With his latest relapse (with symptoms that are much more classic PANDAS: OCD, separation anxiety, anorexia, etc.), he hasn't complained of headaches as much. Very confusing illness, isn't it?
  14. Augmentin is what Dr. K prescribed, before and after IVIG. Based on valuable info from others on this forum, we actually did 30 days of zithromax (prescribed by our local doc) prior to that. Hopefully, the strep is toast by now!!!
  15. Ah... that makes sense, especially in relation to the article. Thanks for the scoop, Kelly! Our son is doing pretty well so far. It's only been a week - and Dr. K warned us that the older kids (he's 12) take longer to fully convert - but we're seeing progress. His OCD contamination fears and food obsessions are improving, and he tells us he feels a little better every day. Don't want to jinx it, but seems like we're getting there!!! I'll try to post updates at least once a week. Thanks for asking!
  16. Hi, Colleen: I'm afraid my son's progress on zithromax was completely obscured by psych meds (ativan and zyprexa) prescribed by our local psychiatrist that put our son over the edge. By the time we were warned by others on this forum and by Dr. K that these meds were bad news for most PANDAS kids and tapered him off, we had tried the zithro, a steroid burst, and advil. Once we got him off the psych meds, he was much better... but still had pretty severe OCD symptoms. That's why we proceeded with IVIG a week ago in Chicago with Dr. K. I know that others have experienced significant improvement just from the zithro, so they can probably give you a better idea. Our son's situation is kind of complicated, because he's on the older end of the spectrum for PANDAS (12) and was originally diagnosed with acute rheumatic fever / Sydenham's chorea. Good luck. From what I've heard from other parents, the zithromax is definitely worth a shot!
  17. Great question... and, BOY, do we wish we'd known this a while back. My son was on prophylactic amoxil for a year, and his symptoms just smoldered. As soon as he stopped the amoxil (per local docs' advice), symptoms came roaring back. Curiosity question: Dr. K recommends augmentin, which is a combination of amoxicillin and clavulanate potassium. Does anyone know how the clavulanate increases the effectiveness of amoxicillin?
  18. Hi, Linda: IVIG with Dr. K went pretty smoothly. Our son had nausea both evenings after the treatment, and mild headache, but he never threw up. Didn't eat well in the mornings, but he's fine now. It's only been a week - and our son is on the older end of the range for PANDAS (12) - so we're trying to stay patient. Dr. K advised us that it would probably take several weeks for "full conversion" for him, due to his age. We've seen some gradual improvement already. Our son's OCD has been less severe - he's cutting down on his spraying with Lysol and can get ready in the morning and at bedtime much faster. (Used to take 45 minutes because of his cleaning rituals.) All I can say is, I realize that IVIG is a serious procedure with potentially severe side effects. But the 3 of us from this forum who just went through this with Dr. K in the past few weeks didn't experience much in the way of problems for our kids. We were very impressed with the quality and professionalism of the Oakbrook Surgical Center, and Dr. K was on site throughout the entire procedure on both days, just in case any complications arose. Don't mean to minimize the difficulty of deciding to go down this path, or the risks. In our case, our son has been miserable for a year and a half, and we really felt that we had to try this. Another expert we'd seen back in March (pediatric neurologist conducting PET scan study that showed inflammation in our son's basal ganglia) also recommended IVIG if "things got worse"... and they definitely did for my son in August. Hope that helps!
  19. BTW, I noticed that Dr. K uses Gamunex, and he seems to have a very high success rate. Hope it works well for you, Kerrie!
  20. My son, also, had a very stuffy nose when this all started and was diagnosed with a sinus infection that never cleared, despite long-term antibiotics (amoxil). We had another child in our neighborhood require emergency surgery because a runaway strep infection in his sinus was literally pushing out on his eyeball. His mom was told that - if the abscess had burst - it could have had a catastrophic health effect. We've been told that staph and strep are getting far more virulent and antibiotic-resistant. Scares the heck out of us!
  21. Hi, Linda: Our son's initial symptoms and this most recent exacerbation were very different. Originally, he had polyarthritis, emotional lability, and severe seizure-like episodes / tics after a high fever (diagnosed at the time as acute rheumatic fever with Sydenham's chorea). At that time, the nights were awful - he couldn't sleep, had night terrors and insomnia, and often pulled all-nighters. He really didn't have any OCD to speak of. This latest flare-up is totally different. He started having anorexia-like symptoms and food obsessions after we discontinued antibiotics (on advice of local docs). Then one morning he woke up with a complete, violent explosion of OCD: massive contamination fears, depression, suicidal talk, crying jags. Very unlike his original symptoms (more classic PANDAS stuff). Some occasional tics and difficulty walking, but minor compared to the 1st outbreak. No real trouble sleeping this time around, other than frequent need to urinate. That's a new one for us, too: he didn't have the frequent bathroom trips with his original symptoms. Dr. K told us that this is not unusual. He's seen these wildly diverging symptoms in relapses with other PANDAS kids, like the illness "mutates" or different areas of the basal ganglia are affected. And yes - our son has widely dilated pupils almost all the time, like a terror reaction. We had noticed this vaguely - seemed secondary to the scarier emotional / behavioral symptoms - but when Dr. K mentioned this as a classic symptom, my wife and I went "wow... yeah, we've seen that, too." Hope that helps!
  22. Hi, lss: I don't believe Dr. K has been published in the U.S., although I believe he has published a number of articles in Eastern Europe. He did mention that he's working on a paper related to his clinical experiences treating PANDAS children, but I don't know when it will hit the journals. I will say this. We met Dr. K last week and had IVIG for our son. We've been fighting this horrible illness for a year and a half, and we've seen a bewildering assortment of doctors with different specialties during that time. Dr. K seemed more knowledgeable - and definitely had more insight into what these kids are experiencing - than anyone else we've encountered. Even during our initial phone consult, he predicted symptoms for our son that were eerily accurate... almost like he'd been peeking in our window! His web pages on PANDAS and the "classic phenotype" also described our situation perfectly. So far, everything he's advised has worked. He had us try a prednisone steroid burst, and it gave us 3-4 days of amazing improvement before symptoms gradually returned (just as he predicted - he considers this a diagnostic tool and not a viable long-term treatment option). He warned us about the dangerous effects of psych meds like ativan and zyprexa on these kids... and, sure enough, when we tapered our son off both meds, his scariest symptoms disappeared within days. I'll admit I'm not impartial here. Our son's been living a nightmare for quite a while now, and we desperately WANT to believe in Dr. K. However, his track record to date (for our son) is better than any other medical professional with whom we've worked. Hope that helps!
  23. Hi, Indigo: Our son (12) had IVIG with Dr. K in Chicago last Friday and Saturday (same time as pmoreno's daughter!). It went pretty smoothly for him. Took about 7 hours each day, including prep time and dextrose hydration before / after. He complained of nausea both evenings after IVIG, and a mild headache, but he never actually threw up. (Didn't sleep well, though, and couldn't eat much either morning afterward.) Dr. K and the staff at Oakbrook Surgical Center really have this down to a science. I think they make the kids as comfortable as they can and minimize the stress to the extent possible. They're pretty sensitive to the unique aspects of dealing with PANDAS children who are in a "waxing phase." We're just keeping our fingers crossed and praying now. We've seen incremental improvement in the OCD, but it's only been a few days. Dr. K warned us that it can take several weeks for kids to fully "convert," especially the older kids like our son. We'll post updates as things progess. Good luck, Indigo!
  24. Scary! This might explain why my son's PANDAS symptoms "smoldered" for a year while he was on prophylactic amoxil... and why his sinus congestion never seemed to go away. Thanks for the link!
  25. Hi, momto2pandas: I think this survey is a great idea, especially given your medical expertise. It's wonderful to have somebody "inside the system" who understands how traumatic PANDAS can be! 1. Our son became ill at age 10 (almost 11), after a high fever with no sore throat. Originally diagnosed as Acute Rheumatic Fever with Sydenham's Chorea (symptoms started with polyarthritis, then severe seizure-like twitching episodes). 2. Don't remember precisely, but I recall he was a bit "ahead of schedule" per our baby book. 3. Don't remember precisely, but I recall he was a bit "ahead of schedule" per our baby book. (He was really into art for some time in his early grade school years and did summer art camps.) 4. No food allergies of which we're aware. (Our doc believes he's mildly sensitive to gluten.) 5. Not bowel, but much more frequent urination. 6. No joint hypermobility. 7. No joint hypermobility for parents. 8. None of which my wife and I are aware (at least, no family members who required psychiatric treatment or hospitalization). 9. Father (me) has Crohn's disease. Mother has history of diabetes. 10. Yes, he's had trouble with the sensation of the stitching in his/her socks against his skin. Definitely worse during PANDAS flare-ups. Developed hypersensitivity to smell, taste, touch, and light since becoming ill. 11a. No panic attacks prior to PANDAS, but lots of them now. 11b. Yes - doesn't want to leave the house, be around friends, now gets very upset if Mom or Dad isn't nearby. 12. Our son has had violent "non-typical" reactions to many meds since the start of his illness. Sleep meds seemed to have the opposite effect, Valium made him hyper, Zyprexa seemed to make OCD worse, Klonapin either had no effect or increased anxiety. Ativan seems to help anxiety a bit, and desyrel helped him sleep during one phase of illness. 13. No mitral valve prolapse in our families. 14. Prior to illness, our son excelled in school, especially in math, although he was also a voracious reader, reading adult SF novels right before the PANDAS struck. Also very good at art. 15. Prior to PANDAS, our son was remarkably mature for his age (he's the oldest of 3 boys). He was quiet, introspective, very intelligent, and very sensitive / empathetic. A great kid all around: we could trust him to do things (like watch his baby brother) beyond his chronological age. That's all changed now. Hope that helps. If we can provide any other info that would be useful, please let us know. BTW, our son was part of a PET scan research study that confirmed inflammation in his right basal ganglia back in March of 08. Thanks for doing this!!!
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