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  1. Hi All (I realize orignal post here was in 2009 but it would be great to hear more/new updates!), Vision: My DS (now 10) has complained of burry vision in full flare and has also had worsening of vision in recovery (needed reading glasses suddenly). Note that my son's treatments included 6 months of high dose Solumedrol infusions. We learned that high dose steriods can cause some vision issues, though generally relatively temporary. Negativity: We also have experienced significant negativity. This has become one of the biggest challenges because we have had a hard time figuring out how to manage this. Here is how I would describe it: during peak flare (the one that caused us to finally get diagnosed), our DS was so sick he was well beyond negative (high oppositionality, terror stricken look, panic, refusal to get treatments, running away, destroying things in his room, and then there were the litany of clear "physical" symptoms like joint pain, vision issues, frequent urination etc). Thankfully, we got overall vast improvement after 6 months of Solumedrol/abx/alleve/plaquenil (and now + methotrexate). BUT, we unfortunately continue to have break through flares following infection (currently in the midst of 6 weeks of MRSA sinus infection - love any help there! MRI is back but awaiting Ear Nose Throat apptmt). We get significant negativity during flares, and a frustrating amount of negativity even during the relatively "good times." During the "good times," our DS's negativity is highly correlated to our asking him to do things that he finds difficult - particularly from a stamina standpoint. The thing he finds most difficult is going to school for 7 hours a day (we do partial days but we still have negativity around this). He also has issues playing sports (even though he wants to for the most part) - he is still having continual joint pain (hence the new methotrexate med - this is a big RA drug in case not aware of it - but dr is hoping it might also help w/PANDAS) and stomach issues (likely from taking all these drugs ). Regarding school, our DS will often say "it is just so long" and "it is so awful that I have to go for the next 8 years of my life." Note that DS is back to being quite social/ bright and at this point seems capable of doing much of the academic work, but is very negative about the prospect of doing school for hours and hours in a row. (It has been a year since he first began treatment and the first six months he really did no academic work whatsoever - was not able to). I would love to hear other people's experiences ... so much of this seems dependent on eliminating further flares.... so they have time to fully recover...
  2. TIna, I am so sorry, I know many of us have been in this exact situation. A crazy catch 22: you can't get them to go to the hospital for much-needed medical treatment and the psych wards won't provide that sort of treatment. Your entire tale of video game addiction and refusal of doctor apptmts/blood draws was exactly where we were in February of this past year. I posted on this forum what all we did on a more general basis (gist was 6 months worth of High Dose Solumedrol infusions (every 4 weeks) plus ABX plus Naproxen plus Plaquenil). I tried to attach that summary with the link below. But meantime, I wanted to mention that in terms of getting him to go to his first Solumedrol infusion, we too couldn't get DS to go. We also tried Lorazepam which wasn't enough. We were finally told by our team of doctors to call 911 and ask for a "wellness check" which means they will send out police officers who are trained in dealing with a health situation like this. It was the worst day of our lives watching this happen. The two officers also couldn't talk him into going. However, with them present, after about a half hour of trying to talk him into it, I think he became just as scared of them as he was of going to the hospital, and he let my husband pick him up and put him in the car. I stayed in the back seat in case he tried to get out (thankfully he didn't). The police followed us to the hospital. We then used a wheelchair and lots of iPad/distractions/candy and more lorazepam. We also got the drs to use this spray that freezes the area for the IV, which is better than the cream. it was touch and go (he tried to leave via the hospital bathroom window), but we finally wore him down. I know this sounds absolutely awful, but we could see the HD Solumedrol working within days/the first week. It was a long haul, but by the second infusion he was already better enough that we could get him to the hospital without major issues. Best of luck to you. It is beyond description to be in this situation. Hope you find relief soon.
  3. We also had very severe separation anxiety as the first symptom. Then we got many others (physical as well as behavioral/psychological). During the first 2-3 months, while DS (age 10) was getting worse and worse we did 2x weekly CBT with lots of "homework" (exposures etc). It did absolutely nothing. In fact, I think the CBT had a very negative effect: permanently imprinting truly awful memories of his school in his brain (thankfully he is now back in school but there was no way he was going to go back to the school where this started; to this day, he won't set foot on that campus). I wish I had taken the energy we were putting into CBT (and then going to the psychiatrist for zoloft, also totally ineffective) and put it into medical treatment (abx, naproxen, steriods etc). Our son would never have gotten as sick as he did had we known sooner (like practically every PANDAS kid). It is very hard to know what to do, but if the antibiotics are not sufficient in bringing back your child (and unfortunately, that appears to be the case quite often) , then I would start pushing for a 5 day steriod burst. If there is a glimmer of hope with that burst, then you know it is not separation anxiety, but brain inflammation and you can pursue more medical treatment options more rapidly. As others above have said, CBT is a very useful tool. Just not for someone in a full flare of PANDAS/PANS. I think CBT can be very helpful after a child has started recovery and parents are trying to nudge them along to be able to do more and more. When we got to that stage, I had a thought along the lines of "oh, so this is what we should have been seeing with all that CBT." And unfortunately it seems CBT is a tool many parents continue to have to use when recovering from future additional flares along the way... Best of luck.
  4. This is a very helpful post. Our 10 yrs old DS is now in recovery after awful flare/diagnosis last year. He is soooo much better. But just as you all have detailed, a significant remaining symptom is cognitive struggles at school (especially reading and writing, but also anything that falls in second half of the day/when brain fatigue sets in). The main concern we have is keeping his frustration level down enough so that he doesn't get so frustrated that he refuses to go (it is struggle to get him there as it is - not due to social but all due to academic anxiety). We did some partial days at start of school year, but it is clear that there is a fine line between pushing too hard (go all day) and allowing accommodations that while nice (half day), then make him get too "out of it/too far behind" so as not to ever be able to go all day for the rest of year ("I don't know what the class is doing so I am not doing to do that at all). He does like/need the social aspect of school (thank goodness), so homeschooling really does not appeal (not to mention work would prevent that). A few questions for you all: 1. how to really pinpoint what the problem is and thus how to support?? we keep asking for the school to help, but while they appear to do their best they are not experts on this. it is very difficult to distinguish whether it is simply cognitive fatigue or true inability to do certain academic tasks. We did neuropsych testing (high IQ but low processing speed and relatively poor working memory). But somehow that does not really seem to map well onto understanding the academic abilities/subjects of a 5th grader. 2. has anyone ever tried any of the ADHD drugs (ritalin etc) for PANDAS kids in recovery mode? On the one hand, they are supposed to "help concentration" on the other hand, I hate to use another drug (we are on plenty: abx, plaquenil, alleve, ssri). It is just so awful watching them struggle and having anxiety about their cog deficits... 3. has anyone tried "cog med" training? It sounds good on the website but then I don't want to put son through yet more stuff if not useful.
  5. From the start of HD Sol and Plaqenil until he was significantly better was about 4 months, but then it has gradually improved in smaller increments since then.
  6. Our DS (age 10) is now so much better and recently went back to school for the first time in nearly a year. I look back at how surreally awful things were a year ago and wanted to summarize for this forum how we got to where we are today. I can only hope this might help others in the doldrums of this thing. It is a dark place. Pardon the long post, but I want to share as many details as possible. I first set out our son’s symptoms/some observations about diagnosis, then detail what our treatment consisted of (son is 90% back!) Background of Symptoms/Onset What I now know to be classic PANDAS symptoms started up when our son had just turned 9 (following a 103.8 fever, we don’t know what the virus/bacteria was bc our urgent care only tested for influenza which was negative). He had no prior health issues and was a great student/very social/sporty etc. All around super easy kid. First symptoms were withdrawing from normal activities and wanting to be on iPad all the time, strong separation anxiety, and restlessness/fidgetiness. Soon, he began to have major panic attacks, often several in a day, dilated pupils, look of terror on his face, frequent urination, extreme irritability and oppositionality, weird emotional regression and inappropriate smiling when something bad/upsetting happening, handwriting issues, refusal to go to school (I now fully understand why), inability to fall asleep (but then sleeping 12 hrs), extreme restlessness/moving around (doing summersaults on bed, standing on head while on sofa etc, but not a pure “tic”), major light and noise sensitivity, complaints of blurry vision, and major joint pain. We finally dug out of him that he had intrusive images. This was like a game of whack a mole. Entire family a wreck. Pscyhologist/Psychiatrist said he had severe anxiety and possibly late-onset ADHD (and that these other symptoms were just his way of expressing his anxiety as pain etc), and so we chased down the anxiety/psychological symptoms with cog behav’l therapy and everything only got worse. Tried Zoloft, did nothing other than major side effects/whole body hurt. Footnote Re When This All Started While it is very clear that his big fever/infection set off this major flare, we realize now that our son probably had smaller flares in previous years. They were minor enough and he was a high functioning kid, such that he “hid” them well or managed around them etc. The main symptoms of these earlier, smaller flares were separation anxiety, complaints of scary images (we assumed from commercials for horror movies etc but now think they were the intrusive images) and frequency of urination (especially following strep 2 years prior to this flare). The thing that was always odd to us was that he was such an outgoing, easy, great student etc, that we never understood the separation anxiety bc it didn’t match his personality profile. Our PANDAS doctors have explained that this illness can creep up with each strep exposure (or later, other viruses/bacteria) until you get an illness that “puts the straw on the camel’s/child’s back” and the immune system gets over some sort of tipping point. I think some of what is out there in the literature about PANDAS makes too much of the suddenness of onset. I think the final, full blown, horrible flare that leads you to treatment can come on suddenly, but a child might have been “ramping up” over years, with each infection getting them higher on the rung of a saw tooth formation. This is important bc I think it very often delays proper diagnosis (see also observations below relating to difficultly in diagnosing kids who don’t get tics or ritual based OCD). Other Observations in Diagnosing PANDAS Three other observations that might help other parents, especially those in the diagnosis phase. This is based purely on personal experience (I am no doctor), observations from reading the literature, and input from several other families I have come to know with PANDAS. I think all of us lose sleep at night knowing that there are children out there who are not getting properly diagnosed, and meanwhile recovery gets more complicated the longer diagnosis is delayed (and worse, usually there are incorrect diagnoses along the way…) 1) 1. OCD, which is one of the primary diagnostics for PANDAS, can take many different forms. I thought that OCD would be extremely obvious, like hand-washing or other rituals that are repetitive. I came to learn only after months of psychologist apptmts and talking with my son that he was having what is called “pure O” where there are no rituals, but rather intrusive thoughts or images. This OCD is far more “invisible” and further, the children often don’t want to talk about it bc they are embarrassed about what their intrusive images or thoughts are about if they are taboo subjects. When children have PANDAS with tics or the type of OCD with rituals, they might get diagnosed more quickly because tics and rituals are (painfully) visible. I remember in one of my many pre-diagnosis 1am google searches coming across PANDAS and thinking it sounded like a possibility, but since we didn’t have “OCD” or tics that we didn’t have PANDAS (though I also now wonder if the fidgety/restlessness is sort of the same type of brain response to swelling as tics) 2 2. Our expert PANDAS doctors explained to us that with PANS/PANDAS there seem to be two groups of patients: a) those for whom antibiotics alone will help – these are likely children who are diagnosed relatively early on (my own suspicion is that these kids often have tics, which are obvious, or perhaps are even reacting to a current strep infection), and those whose immune systems have gotten so whacky from years worth of miss-firing autoantibodies that they will need second line treatments to get the brain swelling down and to tamp down the immune system’s hyperactivity (steroids and “steroid extenders” like plaqenil/cellcept/ritux are key here etc). I wish I had understood this a little more earlier on because I initially read so much about children who were basically completely cured from simply taking antibiotics (perhaps in combo with Naproxen). But when your child takes antibiotics and it doesn’t help, this can be very confusing/disheartening and can perhaps even lead a parent/doctor to think it is not PANDAS despite all other signs pointing there. 3) 3) Regarding other co-infections…. In our son’s case, his diagnosis was relatively straightforward once we got to the experts. He had no pre-existing health or behavioral challenges etc., and he tested negative on the usual set of co-infections (e.g. lyme). That said (and again I am no doctor, just sharing info I have gotten from our drs and from reading), it seems like there are quite a number of of bacteria and viruses that can lead to inflammation of the brain with the same litany of awful symptoms (e.g. the worst-off Lyme patients seem to me to be identical to /are PANS patients). Other posts on this forum have far more info about these other bacteria and viruses. It is honestly rather overwhelming when in the diagnosis phase of this. The main point I want to share is that what I have garnered from our doctors: for any sort of post infections autoimmune brain inflammation is suspected, you will want to follow a protocol of i) treating the infection if it is ongoing and since they can be hard to find, you typically treat as though it is active (generally this is done w antibiotics – though getting the right one matters), ii) bringing down the brain swelling (often with steroid type drugs if it doesn’t happen on abx alone, which is very often the case, or at a minimum, with Naproxen), and iii) preventing future infections and hyperactive autoimmune responses (often long term abx plus a steroid extender of whatever potency deemed necessary). In some cases patients aren’t given ii, but those seem to me to be early treatment cases (or cases where drs haven’t realized there is brain swelling/or have health conditions preventing use of steriods). Some people will try homeopathic options or diet changes for i or iii, but this may or may not be strong enough to get the immune system to behave properly (e.g. there are children who don’t make enough vit B12 (MTHFR mutation etc) where a lot can be gained with B12 supplements or who are too low on vit D etc). What We Did Like many of you, we did all the cog behav’l therapy and SSRi stuff. This was of zero help whatsoever. I remember trying to get him to attend school: I would go into the classroom and sit in the corner and that is when I realized he literally could not do the work. I saw his handwriting – it was like a 4 year old version of himself. He was slipping away even with cognitive abilities. We realized at this point something very awful was happening and started to fear a brain tumor (though never had any seizures so we were put off by most drs on this). We kept going to our pediatrician who has known him since birth. She was surprised by all this since he was a “very straightforward” kid prior, and thankfully she ordered blood work including strep titer levels. Found elevated strep titer level (435 on a test where 300 was max of normal) but no active strep or mycoplasma infections, low Vit D, and elevated monocyte levels. She said could be this thing called PANDAS and put him on Keflex. Didn’t help, he got worse every week. Did one oral steroid 5 day course (60mg/day) and we saw a glimmer of improvement. Then, thankfully we got in with experts at Stanford. We owe them our child’s life (treatment details below). The Stanford PANDAS experts did an extremely thorough exam (done regularly throughout treatment) and even more bloodwork (negative on Lyme and various other coinfections, had elevated levels in 3 out of 4 on Cunningham panel, and again high monocyte, low vit D and high titers). He had choriform movements when his hands were stretched out (apparently you need to look for even slight movements/it is rarely what you see on YouTube videos as that gets diagnosed sooner these days), and movements with his tongue. Also could see it in the “milkmaid test.” Very distressing to watch. Joint pain all over the place. Skin rash indications of some sort (I never really followed that part of exax). They also did handwriting evaluation - also affected. They were very certain he had PANDAS/it was a clear case. Ordered MRI to rule out brain tumor and vasculitis. Meanwhile he was put on Augmentin and 880mg Naproxen/day (kept on Zoloft mainly so as not to have more than one medication change). No improvement. Took weeks to get in for MRI (huge overload at hospital due to need for anesthesia). Immediately following MRI/ruling out of brain tumor or vasculitis, we commenced a 3 day high dose Solumedrol infusion. (Major issues getting him to hospital for this – massive fear of needles/hospitals etc, had to have police escort and used valium - barely helped). But thank goodness we got him there, we could tell he was better even by the third day of infusions. (Note he had allergic reaction to the HD Solumedrol, but we found that if we kept him on Benadryl before, during, and for 2 days after, he was fine, also cut out Naproxen and used Tylenol instead for that time period). By 7 days post infusion, we could see significant improvement. That improvement went like this: very up and down, 2 steps forward, 1 step back, the first symptoms to be relieved were the extreme oppositionality and some of the crazy restlessness/fidgeting, he was maybe 30% better overall). Overall, through below-detailed treatments, his symptoms disappated in the reverse order in which they arrived. Weird, but I guess makes some sense based on the brain swelling and then de-swelling. After the first HD Solumedrol 3 day infusion, we did the following: - As soon as we could tell the Solumedrol was helping, we started him on Plaqenil (RH drug used for long time, goal is for it to help calm immune system generally and also “hold” the effects of the steroids). - Continued on antibiotics, but we switched to Amoxycillin which is supposed to be 100% strep effective (eventually to a phrophelactic level dose) - Stayed on the 880mg/day Naproxen and existing Zoloft - 4 weeks after first set of infusions, did another 3 day HD Solumedrol infusion - Then, for the next 4 months, we did 1day HD Solumedrol infusions, spaced out by 4 weeks. (fortunately we did not see “slippage” between infusions, which I think is why we were only put on Plaquenil instead of one of the other, stronger steroid extenders like Cellcept or Rituximab, which are also being used in combo with the HD Sol). The 1 day infusions were far more tolerable (better with sleep and not feeling awful). Our son improved with each infusion by day 7, though there were side effects (weight gain, cognitive fog, a different kind of inability to fall asleep – we used Benadryl every night); these side effects tended to subside the further out we got from every infusion so week 3 and 4 always the best. - We never did IVIG. We were told that it is currently only working in 20% of patients our drs were treating – perhaps b/c too many in the donor pool have PANDAS or b/c of particular strain of strep around here. I also see that very often IVIG is prescribed together with HD Sol, so maybe the latter is the more key med. (Also, our insurance wouldn’t have covered IVIG, at least without a fight – good news is HD Sol is very common for autoimmune disease/is not hard to get approved like IVIG). We were told that the HD Sol pulsing was a more aggressive treatment protocol anyway. Other non-medical things we did that I think helped: -We had his friends over as much as possible, even when he was super sick and really could only play video games (his friends were great and helped with that, and I have never found a 9 yr old boy who doesn’t want to play video games). Gaming was his favorite thing to do b/c he said he didn’t have to deal with his intrusive images/feelings of fear/sunlight. The social was a big big help I keeping him as normalized as you can be when not attending school, and later, in getting him back to school (that is how to see your friends the most!) -I think one of the best things we did, in retrospect, was take vacations that were in the sun/lots of swimming/with other kids. This got him back in better shape, but the sun exposure also seemed extremely helpful. I have since heard there is lots of research on the role of Vit D in other autoimmune diseases like MS (maternal grandmother has this), so we are giving 5000 IU of Vit D/day. Also, I think our vacations are helpful b/c of getting them out into a different routine/change of scene helps the brain forge new pathways. -We tried getting him to do academic work, but this really never worked at all… Best was Kahn Academy, which he would do some of but only review of stuff he already had learned before getting sick/he would always stop where “new learning” would start. We really struggled with this b/c the advice is to push them and this is hard if your kid won’t even let you read to him). We only got him back to academics/school after done with all HD Sol infusions (perhaps brain fog lifting) - Nightly Benadryl was big help for sleep. Have stopped now, but drs said to fine to use as needed. Today Son is so much better (outside the academic context I would say 95% back). Anxiety/fear sensation/intrusive images, joint pain, fidgeting, restlessness, irritability, handwriting - all the other symptoms much much better. Back in school! Very social. Main remaining issues have to do with cognitive functioning/cognitive fatigue, specifically with short-term memory and processing speed. The anxiety he still has is actually what I would term reasonable anxiety at having missed so much school and not having his brain fully back up and running academically. I would be anxious about that too. We are not sure how best to help the cognitive functioning come back other than to wait. This is our challenge today. We also have not had a major test of his immune system (no major illnesses in our house since he got so sick) so we will have to see if his immune system “holds.” Questions we would love help with 1. How to help cog functioning (anyone tried “cog med” or neurofeedback? Anything else other than time?) 2. I still don’t feel like I have a clear sense of whether this is supposed to improve with puberty? Any insights there would be very welcome!!!
  7. Our DS (age 10) is now so much better and recently went back to school for the first time in nearly a year. I look back at how surreally awful things were a year ago and wanted to summarize for this forum how we got to where we are today. I can only hope this might help others in the doldrums of this thing. It is a dark place. Pardon the long post, but I want to share as many details as possible. I first set out our son’s symptoms/some observations about diagnosis, then detail what our treatment consisted of (son is 90% back!) Background of Symptoms/Onset What I now know to be classic PANDAS symptoms started up when our son had just turned 9 (following a 103.8 fever, we don’t know what the virus/bacteria was bc our urgent care only tested for influenza which was negative). He had no prior health issues and was a great student/very social/sporty etc. All around super easy kid. First symptoms were withdrawing from normal activities and wanting to be on iPad all the time, strong separation anxiety, and restlessness/fidgetiness. Soon, he began to have major panic attacks, often several in a day, dilated pupils, look of terror on his face, frequent urination, extreme irritability and oppositionality, weird emotional regression and inappropriate smiling when something bad/upsetting happening, handwriting issues, refusal to go to school (I now fully understand why), inability to fall asleep (but then sleeping 12 hrs), extreme restlessness/moving around (doing summersaults on bed, standing on head while on sofa etc, but not a pure “tic”), major light and noise sensitivity, complaints of blurry vision, and major joint pain. We finally dug out of him that he had intrusive images. This was like a game of whack a mole. Entire family a wreck. Pscyhologist/Psychiatrist said he had severe anxiety and possibly late-onset ADHD (and that these other symptoms were just his way of expressing his anxiety as pain etc), and so we chased down the anxiety/psychological symptoms with cog behav’l therapy and everything only got worse. Tried Zoloft, did nothing other than major side effects/whole body hurt. Footnote Re When This All Started While it is very clear that his big fever/infection set off this major flare, we realize now that our son probably had smaller flares in previous years. They were minor enough and he was a high functioning kid, such that he “hid” them well or managed around them etc. The main symptoms of these earlier, smaller flares were separation anxiety, complaints of scary images (we assumed from commercials for horror movies etc but now think they were the intrusive images) and frequency of urination (especially following strep 2 years prior to this flare). The thing that was always odd to us was that he was such an outgoing, easy, great student etc, that we never understood the separation anxiety bc it didn’t match his personality profile. Our PANDAS doctors have explained that this illness can creep up with each strep exposure (or later, other viruses/bacteria) until you get an illness that “puts the straw on the camel’s/child’s back” and the immune system gets over some sort of tipping point. I think some of what is out there in the literature about PANDAS makes too much of the suddenness of onset. I think the final, full blown, horrible flare that leads you to treatment can come on suddenly, but a child might have been “ramping up” over years, with each infection getting them higher on the rung of a saw tooth formation. This is important bc I think it very often delays proper diagnosis (see also observations below relating to difficultly in diagnosing kids who don’t get tics or ritual based OCD). Other Observations in Diagnosing PANDAS Three other observations that might help other parents, especially those in the diagnosis phase. This is based purely on personal experience (I am no doctor), observations from reading the literature, and input from several other families I have come to know with PANDAS. I think all of us lose sleep at night knowing that there are children out there who are not getting properly diagnosed, and meanwhile recovery gets more complicated the longer diagnosis is delayed (and worse, usually there are incorrect diagnoses along the way…) 1) 1. OCD, which is one of the primary diagnostics for PANDAS, can take many different forms. I thought that OCD would be extremely obvious, like hand-washing or other rituals that are repetitive. I came to learn only after months of psychologist apptmts and talking with my son that he was having what is called “pure O” where there are no rituals, but rather intrusive thoughts or images. This OCD is far more “invisible” and further, the children often don’t want to talk about it bc they are embarrassed about what their intrusive images or thoughts are about if they are taboo subjects. When children have PANDAS with tics or the type of OCD with rituals, they might get diagnosed more quickly because tics and rituals are (painfully) visible. I remember in one of my many pre-diagnosis 1am google searches coming across PANDAS and thinking it sounded like a possibility, but since we didn’t have “OCD” or tics that we didn’t have PANDAS (though I also now wonder if the fidgety/restlessness is sort of the same type of brain response to swelling as tics) 2 2. Our expert PANDAS doctors explained to us that with PANS/PANDAS there seem to be two groups of patients: a) those for whom antibiotics alone will help – these are likely children who are diagnosed relatively early on (my own suspicion is that these kids often have tics, which are obvious, or perhaps are even reacting to a current strep infection), and those whose immune systems have gotten so whacky from years worth of miss-firing autoantibodies that they will need second line treatments to get the brain swelling down and to tamp down the immune system’s hyperactivity (steroids and “steroid extenders” like plaqenil/cellcept/ritux are key here etc). I wish I had understood this a little more earlier on because I initially read so much about children who were basically completely cured from simply taking antibiotics (perhaps in combo with Naproxen). But when your child takes antibiotics and it doesn’t help, this can be very confusing/disheartening and can perhaps even lead a parent/doctor to think it is not PANDAS despite all other signs pointing there. 3) 3) Regarding other co-infections…. In our son’s case, his diagnosis was relatively straightforward once we got to the experts. He had no pre-existing health or behavioral challenges etc., and he tested negative on the usual set of co-infections (e.g. lyme). That said (and again I am no doctor, just sharing info I have gotten from our drs and from reading), it seems like there are quite a number of of bacteria and viruses that can lead to inflammation of the brain with the same litany of awful symptoms (e.g. the worst-off Lyme patients seem to me to be identical to /are PANS patients). Other posts on this forum have far more info about these other bacteria and viruses. It is honestly rather overwhelming when in the diagnosis phase of this. The main point I want to share is that what I have garnered from our doctors: for any sort of post infections autoimmune brain inflammation is suspected, you will want to follow a protocol of i) treating the infection if it is ongoing and since they can be hard to find, you typically treat as though it is active (generally this is done w antibiotics – though getting the right one matters), ii) bringing down the brain swelling (often with steroid type drugs if it doesn’t happen on abx alone, which is very often the case, or at a minimum, with Naproxen), and iii) preventing future infections and hyperactive autoimmune responses (often long term abx plus a steroid extender of whatever potency deemed necessary). In some cases patients aren’t given ii, but those seem to me to be early treatment cases (or cases where drs haven’t realized there is brain swelling/or have health conditions preventing use of steriods). Some people will try homeopathic options or diet changes for i or iii, but this may or may not be strong enough to get the immune system to behave properly (e.g. there are children who don’t make enough vit B12 (MTHFR mutation etc) where a lot can be gained with B12 supplements or who are too low on vit D etc). What We Did Like many of you, we did all the cog behav’l therapy and SSRi stuff. This was of zero help whatsoever. I remember trying to get him to attend school: I would go into the classroom and sit in the corner and that is when I realized he literally could not do the work. I saw his handwriting – it was like a 4 year old version of himself. He was slipping away even with cognitive abilities. We realized at this point something very awful was happening and started to fear a brain tumor (though never had any seizures so we were put off by most drs on this). We kept going to our pediatrician who has known him since birth. She was surprised by all this since he was a “very straightforward” kid prior, and thankfully she ordered blood work including strep titer levels. Found elevated strep titer level (435 on a test where 300 was max of normal) but no active strep or mycoplasma infections, low Vit D, and elevated monocyte levels. She said could be this thing called PANDAS and put him on Keflex. Didn’t help, he got worse every week. Did one oral steroid 5 day course (60mg/day) and we saw a glimmer of improvement. Then, thankfully we got in with experts at Stanford. We owe them our child’s life (treatment details below). The Stanford PANDAS experts did an extremely thorough exam (done regularly throughout treatment) and even more bloodwork (negative on Lyme and various other coinfections, had elevated levels in 3 out of 4 on Cunningham panel, and again high monocyte, low vit D and high titers). He had choriform movements when his hands were stretched out (apparently you need to look for even slight movements/it is rarely what you see on YouTube videos as that gets diagnosed sooner these days), and movements with his tongue. Also could see it in the “milkmaid test.” Very distressing to watch. Joint pain all over the place. Skin rash indications of some sort (I never really followed that part of exax). They also did handwriting evaluation - also affected. They were very certain he had PANDAS/it was a clear case. Ordered MRI to rule out brain tumor and vasculitis. Meanwhile he was put on Augmentin and 880mg Naproxen/day (kept on Zoloft mainly so as not to have more than one medication change). No improvement. Took weeks to get in for MRI (huge overload at hospital due to need for anesthesia). Immediately following MRI/ruling out of brain tumor or vasculitis, we commenced a 3 day high dose Solumedrol infusion. (Major issues getting him to hospital for this – massive fear of needles/hospitals etc, had to have police escort and used valium - barely helped). But thank goodness we got him there, we could tell he was better even by the third day of infusions. (Note he had allergic reaction to the HD Solumedrol, but we found that if we kept him on Benadryl before, during, and for 2 days after, he was fine, also cut out Naproxen and used Tylenol instead for that time period). By 7 days post infusion, we could see significant improvement. That improvement went like this: very up and down, 2 steps forward, 1 step back, the first symptoms to be relieved were the extreme oppositionality and some of the crazy restlessness/fidgeting, he was maybe 30% better overall). Overall, through below-detailed treatments, his symptoms disappated in the reverse order in which they arrived. Weird, but I guess makes some sense based on the brain swelling and then de-swelling. After the first HD Solumedrol 3 day infusion, we did the following: - As soon as we could tell the Solumedrol was helping, we started him on Plaqenil (RH drug used for long time, goal is for it to help calm immune system generally and also “hold” the effects of the steroids). - Continued on antibiotics, but we switched to Amoxycillin which is supposed to be 100% strep effective (eventually to a phrophelactic level dose) - Stayed on the 880mg/day Naproxen and existing Zoloft - 4 weeks after first set of infusions, did another 3 day HD Solumedrol infusion - Then, for the next 4 months, we did 1day HD Solumedrol infusions, spaced out by 4 weeks. (fortunately we did not see “slippage” between infusions, which I think is why we were only put on Plaquenil instead of one of the other, stronger steroid extenders like Cellcept or Rituximab, which are also being used in combo with the HD Sol). The 1 day infusions were far more tolerable (better with sleep and not feeling awful). Our son improved with each infusion by day 7, though there were side effects (weight gain, cognitive fog, a different kind of inability to fall asleep – we used Benadryl every night); these side effects tended to subside the further out we got from every infusion so week 3 and 4 always the best. - We never did IVIG. We were told that it is currently only working in 20% of patients our drs were treating – perhaps b/c too many in the donor pool have PANDAS or b/c of particular strain of strep around here. I also see that very often IVIG is prescribed together with HD Sol, so maybe the latter is the more key med. (Also, our insurance wouldn’t have covered IVIG, at least without a fight – good news is HD Sol is very common for autoimmune disease/is not hard to get approved like IVIG). We were told that the HD Sol pulsing was a more aggressive treatment protocol anyway. Other non-medical things we did that I think helped: -We had his friends over as much as possible, even when he was super sick and really could only play video games (his friends were great and helped with that, and I have never found a 9 yr old boy who doesn’t want to play video games). Gaming was his favorite thing to do b/c he said he didn’t have to deal with his intrusive images/feelings of fear/sunlight. The social was a big big help I keeping him as normalized as you can be when not attending school, and later, in getting him back to school (that is how to see your friends the most!) -I think one of the best things we did, in retrospect, was take vacations that were in the sun/lots of swimming/with other kids. This got him back in better shape, but the sun exposure also seemed extremely helpful. I have since heard there is lots of research on the role of Vit D in other autoimmune diseases like MS (maternal grandmother has this), so we are giving 5000 IU of Vit D/day. Also, I think our vacations are helpful b/c of getting them out into a different routine/change of scene helps the brain forge new pathways. -We tried getting him to do academic work, but this really never worked at all… Best was Kahn Academy, which he would do some of but only review of stuff he already had learned before getting sick/he would always stop where “new learning” would start. We really struggled with this b/c the advice is to push them and this is hard if your kid won’t even let you read to him). We only got him back to academics/school after done with all HD Sol infusions (perhaps brain fog lifting) - Nightly Benadryl was big help for sleep. Have stopped now, but drs said to fine to use as needed. Today Son is so much better (outside the academic context I would say 95% back). Anxiety/fear sensation/intrusive images, joint pain, fidgeting, restlessness, irritability, handwriting - all the other symptoms much much better. Back in school! Very social. Main remaining issues have to do with cognitive functioning/cognitive fatigue, specifically with short-term memory and processing speed. The anxiety he still has is actually what I would term reasonable anxiety at having missed so much school and not having his brain fully back up and running academically. I would be anxious about that too. We are not sure how best to help the cognitive functioning come back other than to wait. This is our challenge today. We also have not had a major test of his immune system (no major illnesses in our house since he got so sick) so we will have to see if his immune system “holds.” Questions we would love help with 1. How to help cog functioning (anyone tried “cog med” or neurofeedback? Anything else other than time?) 2. I still don’t feel like I have a clear sense of whether this is supposed to improve with puberty? Any insights there would be very welcome!!!
  8. Very sorry for the long, frustrating road. I just thought it worth mentioning that antibiotics (with or without naproxen) is not sufficient to make a dent in many PANS/PANDAS patients (my 10 year old DS included). For us, high dose Solumedrol (steriods) infusions may be key. IVIG is hard to get approved by insurance, though that may also work. Something you could try is taking the pill form of prednisone for a 5-7 day course (assuming you can get a script for it) and see if there is any symptom relief (then again, not seeing improvement is not a clear sign of no brain inflamation - it could be after all these years you would need the much higher dose infusions to see improvement. As a data point, we tried all sorts of antibiotics, plus naproxen (aleve) for our son and nothing worked over approx 3 months; it was at that point that we moved on to high dose Solumdrol for 6 months. He is basically 90% better, the main remaining symptom is inability to concentrate on long form academic stuff (though drs tell us this can also be from the steriods, so we are happy to have recently had what we hope will be the last infusion - our drs recommended 6 months worth of high dose Solumedrol infusions/1x a month, plus amoxycillin, plus aleve FYI) I wish there were more doctors with expertise on this throughout the world... One last note, did you ever have joint pain? That is a symptom experienced by many PANDAS/PANS patients I believe, and is an indicator of auto-immune involvement. Best of luck. Hope you feel better soon.
  9. D id they give her Solumderol along with the IVIG? If so, we have had horrible stomach pains with our 10 yr old ds (we even went to ER) after Solumedrol infusions. It was all cured by pushing Benadryl during infusion and post infusion for about 2 days.
  10. Our 10 year old son did oral steriods (60 mg for five days, then stopped cold) and we saw a small improvement on day 3, which went away as soon as we stopped. It was just a glimmer. We had also done 4 weeks of antibiotics by then. We then got high dose steriod infusions. That is when we saw real improvement (7 days post a 3 day infusion). I am no doctor, but it seems like what your 16 year old had may not be enough of a dosage to see much improvement....
  11. MC2

    IV steroid

    H there, We have been doing 5 months worth of high dose Solumedrol for our son. The first two months worth it was three days in a row (since then only 1 day, spaced by 4 weeks). The main side effects we have had: exhaustion for the first few days (but weird exhaustion where you also have underlying restlessness), no appetite first 2 days but then moving to huge appetite for salty chip type stuff, puffy face, weight gain, grumpiness (note, we push benadryl for first 2 days after infusion b/c son gets red cheeks and weird stomach pain, which were deemed an allergic reaction, but this also makes him sleepy (Benadryl totally fine to give, per our doctors and we use it every night for last several months due to sleep issues - we had these all along but the steriods are known to make worse) . That all sounds pretty bad BUT, the steriods have been the single thing that got us vast improvement. Usually we saw the improvement start on day 6 or so (believe me I remember waiting - it is awful). The weird thing is that the improvement is a bit bumpy, not a straight line up... it is good over time to think back over weeks and months not back over days. I think by about week 3 post-infusion, we always have gotten the best of both worlds: bad side effects disappearing, benefits all there, but then by week 4 we have always been back in for another infusion. We are doing this protocol for 6 months, so we will see if it "holds" after we stop infusions. Fingers crossed. Note our son (age 10) is also on Plaquenil which is supposed to help hold the effects of the solumedrol. Hoping for the best for all these kids.
  12. Sham7Rock, So sorry to hear about your son's experience, not to mention you having this on your hands as a single parent. My son (9 yrs old) has had nearly identical symptoms. After three months of cognitive behavioral therapy and SSRIs, we realized that there was something else terribly wrong (he also had dialated pupils, light sensitivity and couldn't stop moving, and those same bedtime fear/rages were simply awful - the entire family was in a state of panic/stress). We have not had IVIG, though I have heard that it works for many (though in some cases it is needed every 4 weeks - unclear for how long). In our case, after about 5 weeks of Augmentin which didn't do much, we did a 5 day predisone trial (60mg/day) which helped a little, and then we started with high dose steroid (solumedrol) infusions (3 infusions in a row, spaced by four weeks). He is also on Plaquenil (usually a rheumatoid arthritis drug) and remains on antiobiotics prophelaxis. My understanding from our doctors (Stanford team) is that they have had varied success with IVIG. Interestingly, they say IVIG may work better in certain parts of the country than others, and that they used to have more success with it (not clear whether this is because of different strep strains or the donors who are giving the immunoglobin your child is getting). I understand that there are many doctors who give IVIG together with Solumedrol, so that is another thing to ask about. What I gather is that the steriods need to be high dose/hit the immune system pretty hard (the idea with the plaqenil is to tamp down the immune system). Sorry this isn't really directly responsive to your IVIG question, but (a) I thought it might be helpful for your son's case, and ( I wanted to see what others are experiencing with the IVIG versus high dose solumedrol approach. I think Stanford will at some point publish on this approach, but if it can help someone else out there before then... My son (three steriod treatments in - and note the reduce the number of days after they see some good progress) is vastly better. We aren't 100% back to normal, but his personality is back and we in such a better place. Hope the same will be true for you soon.
  13. MC2

    prednisone pulsing

    Hi KLW, I am curious how your DS is doing? Better I hope! My DS (age 9 - diagnosed this past Fall) has just finished his second set of three high dose Solumedrol infusions. This was the first thing that brought him any improvement (we saw him get approx 1/3 to his baseline approx a week after completing the first set of three infusions). We then waited 3 weeks and have just finished another set of three Solumedrol infusions (I don't know what the dosage is, but it is "high dose" and he weighs 95 pounds). I can only hope this round brings him further improvement. He is also on Plaquinil to try to keep his immune system calmed down. We are being treated at Stanford. I ask all this not only to see how the Solumedrol did for you, but with any guidance on you would compare it to the IVIG? It seems that at this time, the Stanford doctors are preferring to go with the Solumedrol pulses plus Plaquinil before trying IVIG (for kids for whom antiobiotics alone did not do enough). This is different from what I read about at places on the east coast, chicago and seattle, where I still hear more about IVIG as the second line treatment to antibiotics. The side effects of all these steriods are not fun. We are desperate to get our son better. I hope yours is.
  14. I believe many children with PANS/PANDAS have the exact Chorea movements you speak of (milkmaid, and the hands out in front moving a bit with the eyes closed, there is also something they can test involving the tongue). My son has this too and is PANDAS. Apparently, this comes with the current thinking by doctors that PANS/PANDAS is a "forme fruste" of Sydenham's Chorea. Your son's other symptoms also sound very consistent with PANS/PANDAS. I am not sure where you live, but seems like it would be very good idea to get him to a PANS specialist... Best of luck. Sorry you are dealing with this.
  15. MC2

    Dr. L or Dr. T?

    I realize it has been a year since your query about a provider in Florida, but thought I would make note even if late: I have heard a lot about Dr. Tanya Murphy at the Univ of South Florida. With any luck, you no longer need this information. Sorry you have been dealing with this.
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