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Everything posted by norcalmom

  1. You are using the wrong antibiotic. We uncovered mycoplasma after my son had been on zith fir over a year. Search this forum for more info. I used to post alot on this topic, you can search my posts- i shared alot if myco research. You need to track the direction of the titers. BOTH igg and IGM should be declining. The absolute value is less important than the direction. Individuals will vary in the speed at which they decline. Always use the same lab and same test to track this. There are two different ways to measure these antibodies- and you cannot translate between the meathods, so stick with the same test and same lab, even if u switch docs. Doxycycline. That is the prefered antibiotic to treat myco- or another in the same class of antibiotics. Zith is a different class of antibiotics. We did a very high dose doxy for several months. He actually took Doryx- its easier on stomache version of doxy, I think there is now a generic version of it. Also- doxy of any kind will more than likely make you sun sensitive. Be aware if you use doxy even 5 minutes in sun can cause a burn. Vitamin D3- adding this to my sons meds greatly sped the rate at which his IGG began to decline. Weve tried many supplements over the years- this is the only one I can say we can see and measure(via testing) its results. My sons vit D3 was measured first, and found to be very low. This vit is critical to immune function. Its actially a hormone, not truly a vitamin. Your sons positive IGM indicates a recent infection. It will eventualky decline- even if he still has an infection. The IGG can stay positive for many years, even if the infection is gone- it means your body is still making antibidies to the infection. The direction is what tells you if the infection is clearing. Most Doctors will tell you that if the IGM is neg there is no infection- this is not true. I have no idea why doctors are taught this. If you read what the makers of the tests say, you will will find out why they measure both IGM and IGG. I had 2 specialist Tell me neg IGM meant no infection -(even tho my sons IGG was 10x the upper limit of normal range). I did my research and tracked a rising igg- and brought it to them along with the lab testing companies "instructions" for reading and using the tests. (and other researchers use if IGG tracking for mycoplasma infection) it was only with this information that the 2 doctors agreed. My son had an active infection- probably for many years. After a while the body stops making IGM to myco- that occurs with either repeat infections or chrinic infections. Good luck. Its a frustrating infection. It takes time to get rid of, and even longer to track to see if its cleared- you have to wait weeks or even months to see the antibodies start to decline, because they maintain levels for a while after an infection is gone. You shouldnt test less than 2 months apart- maybe even 3, because small ups and downs over short period of time doesnt mean anything, or could give you mis-information. You are looking for a big drop in the IGG over a few months. Hope this helps-
  2. I've been away from the whole scene for a while...but I saw something on this conference today and since I have family in that area I think I'm going to attend. I'd like to see what's new- and hope that some research will be shared that should have been published by now. Day 1 speakers look interesting.
  3. The site is awesome. Its copyrighted 2014 - its pretty new. Its kind of exciting....heretofore all the sites have been parent patient initiated or single doctor (with just a page...) the site is very polished, easy to navigate... The list of its members its great...although I don't see Agalliu on there...hmmm they are asking for funding for him on one of there pages, they should get his name on there too... Thanks so much for posting and finding!
  4. Here's a great 20/20 episode on misophonia. Watch parts one and two. Part two opens with Kelly Ripa, but the guy at the end more severe case. Kelly's would be a very mild case. Part 1 http://abcnews.go.com/2020/video/taylor-misophonia-medical-mystery-teen-sound-rage-2020-16383729 Part 2 http://abcnews.go.com/2020/video/ripa-kelly-misophonia-medical-mystery-disorder-mental-health-2020-16383771 There is scant research. I know for a fact that my son's is pandas immune related. It has escalated with other pandas symptoms and improved (but never disappeared) with related symptoms. Its very similar to OCD, and its kind of its own thing - because there are 2 differences - the immediate reaction to the trigger, and the relationship to rage/anger vs compulsion (which can be delayed, and is more anxiety producing than anger producing) The doctor that has done the most research, or is a least trying to do research, is an audiologist. Treatment is (according to her website) "Part 1) Use of sound generating equipment to help abolish and weaken the abnormal connection between the sounds and the autonomous nervous system (evoking rage, anger, frustration, mood changes, the 'flight or fight' impulse), as prescribed by audiologists who have training in this very specialized field Part II) Cognitive behavioral therapy with a qualified professional, for six to twelve weeks with focus on the area of misophonia. These professionals will have experience with OCD, phobias, anxiety, and adolescents when possible. But I've found no research that says it works. I have found a lot of anecdotal info from suffers that say CBT and exposure therapies that they tried were excruciating and not helpful (adults posting on line) ..but I haven't researched this for over a year, so maybe there's new stuff out there. Here is a link to the audiologists site. I did notice that they have added a list of audiologists that are now familiar with and treat it. (you think the pandas list is short...lol...18 months ago she was the only person I could find, now there are about 5 in the country... http://www.tinnitus-audiology.com/index.html And another site, here is treatment provider list from Misophonia Network: http://www.misophonia-provider.com/PROVIDERS_BY_REGION.html
  5. eamom - where did you find that perianal strep leads to treatment refractory PANDAS (vs regular "treatable" - LOL - pandas?) Thanks! Trintiybella - get your child in for a perianal strep swab asap. I'm pretty sure my son's pandas started this way - before I ever heard of perianal strep. I wasn't until I was in the pandas world for a year before I heard of this. I just put some triple antibiotic ointment on it and it went a way - on and off for 2-4 weeks? I thought my son wasn't wiping down there or cleaning well enough. its got a specific look to it - google images of it.
  6. Thanks for posting both articles eamom and mission mama. I've been off the forum for a long time - any word on the NIMH study? or the mouse BBB/strep paper? Shouldn't these be out by now?
  7. Mom 63 - Sorry, but no. He seemed to improve for a bit, then slid back. The third IVIG was not as helpful as the other two. Seems diminishing returns. I think Swedo talked about tis in a speech a awhile back. But in general, he's not too bad - the misophonia is there. And anxiety (does not handle stress well). Occasional insomnia (but rare now). high functioning in school. Oh, and skin picking - it was bad a while back, he would pick spots on his legs, much less so now. On no meds, or even supplements at the moment. Stopped antibiotics over a year ago. I will get back to supplements - I just needed to take a break from trying. Vit D probably single most helpful supplement we found over the years. I need to retest his mycoplasma titer - and plan to soon. If elevated will go back on Doxy. I've been off the forum for a long time, part of my "taking a break". I came on today to see if the NIMH study or the mouse BBB study have been published yet. Seems like they have been taking a LONG time to get that done.
  8. I'm sorry your child has this. My son has it too. it's horrible, and has been the one symptom that never relented during his 5 years of pandas. He has it only with me and his dad - its worst with me. It extends beyond eating, he watches me to see if I swallow saliva. I can't be in the room talking with him too long. I've not found much research on this. For some reason, it has fallen to audiologists, but to me this is wrong, because my son's is clearly pandas related. It makes no sense - since only MY chewing /swallowing produces rage, so it isn't the sound itself, I'm pretty sure my swallow sounds the same as everyone else's. It is however different from OCD. The trigger is associated with rage, rather than the need to do a ritual. And it is not as controllable. Compulsions (and even tics) can be delayed - and then "they all come out". This is not like that - its like a direct wire from trigger (mom swallowing) to rage center of his brain. No rituals involved - just immediate emotion. Severity in the beginning of pandas went up and down, with his pandas symptoms. There have been improvements after IVIG, and antibiotics - so when his pandas symptoms were almost all gone, his misophonia was better - but not all gone. He would "forget" to watch for me to swallow. And his rages would be much shorter. At its worst, if he walked into the kitchen and found I had food in my mouth (I would stop chewing) he would cry/scream yell at me, shake is fist, and hide in the closest for 15-20 minutes kicking and screaming. I was scared of him - that someday his rage would cause him to harm me. We took a pretty hard stance on the first shaking and physical side of it - he can slam the door and punch the pillow if he wants but if he approaches me he's in serious trouble. Problem is when they are like that, they don't care much about consequences. If your child has a "mild case" I would get into some CBT, and think about ERT. Even if it doesn't help with the actual emotions, they can have some tools to deal with their rage. My son is now too old for this - he won't let us do any therapy - he's almost 16. And since I'm the trigger, I just can't bring myself to put him through it. I wish I had done more when he was younger. We did some therapy, but it was mostly for anxiety and OCD - the therapist never got to the misophonia, other than talking about it, because he had no specific training with it (I think).
  9. Does anyone's immunologist use prednisone before or during IVIG to avoid the side effects? I recall reading that Dr B does this? When does he start them, and for how many days? I'm not talking about after- we did that the last two times. We were instructed to wait and see if he got a headache. By the time he started getting a headache, he vomited up the prednisone. And it was horrible.he went from zero to holding his head screaming and vomiting in about 10 minutes. The second IVIG he was waking up in the middle of the night 10 days after IVIG with nausea and migraine( for 9 days prior I was setting alarm to give him Advil at 4:00am!) Constant advil helped, as did the one remaining steroid pill I had, but I'm hoping to avoid this altogether next time. Thanks for any info!!
  10. After reading Bruhners books I learned at least one thing. Herbs and supplements can effect your immune system. Some things up regulate certain responses( like t-1 dominance, or IL -17) and some up others. Or down regulate them. It's very complicated. From the latest research that Agalliu is doing, as well as reading about MS-(personally think THIS is the disease pandas most similar to, not syndenham chorea- although SC was good starting point) we need more info on what reactions are specifically out of whack in our kids before doing a bunch if stuff. I got all excited and bought a host if supplements, then I got cold feet, because I think you really need to be under the care of an expert like Bruhner if you aren't 100% sure of exactly what you are treating. In the end I ended up using just a couple in addition to our usual stuff(d3- because DS was low, and all the MS research on it, occasionally IRON- DS low ferritin, and Bruhner says you need to be strong- if infection "eating" the iron, the answer is not to starve the infection- answere to give enough for you to feel better!, and some probiotics, and occasional methyfolate - deficient in that ) So the few I liked the best and seemed the most benign were EGCG- this is an immune regulator. It's green coffee extract. Doesn't significantly increase or decrease any thing- it balances. Yucca root- take with high protein meals- lowers high amonua levels( which my son had/has ) And Resveratrol. I forgot why that one, but it's one I occasional throw it in the mix, although we use EGCG much more. And liposodal curcummin. That's just an antiinflamatory that can permeate the BBB, and you can give it everyday, to keep inflamation down. When my kids/ family are on verge of a cold I give all of us Sambucus( elderberry extract) it claims to be the only thing that has studies to back up its claims as far as "immune boosting" powers. And when I say that here- I mean specifically protecting against common cold. Many on here are trying to suppress the immune system. Steroids do this- and so does IVIG in a way because your immune system stops production because it is flooded with donor antibodies so it does not need to produce antibodies for a while. And people are doing other stuff now too- like cell-cept and other immune suppressors usually used for rheumatoid arthritis. Unfortunately there is usually one thing out of whack- but our therapies aren't targeted. And in our kids case we aren't even sure what that one thing is. The holy grail is finding that one over producer, and a therapy that can suppress it, without suppressing anything else. MS research is coming very close to this. I digress -sorry- it's a fine balance of proving protection from illness, with out over stimulating the system in your specific situation. (Which varies person to person). Best of luck keeping healthy this winter-
  11. Has anyone worked with an advocate to work on their behalf to get insurance approval? I'm talking about a professionally paid person that knows the ins and outs - laws- the process, ect. Our preapproval was denied last time and I gave up during our second appeal - at which point we decided to try some other things. We are now ready to try for IVIG again, and I just got my first letter saying they don't have enough clinical information to tell me if they're going to approve it or not. If anyone has used someone that worked for them , and is familiar with pandas/immune issues, if you could please PM me the contact name I'd really appreciate it!! Thank you!!
  12. I haven't read the entire article just the abstract, and as I recall Cunningham herself and her last paper did disclose that her findings did not correlate with previous findings in regards to D2 (I think?). It's your most recent paper and she talks more about the ratio of D1 to D2. He doesn't mention can kinase II or anti-lysoganglioside or D1, and his testing group is very small. There could be a great many anti-neuronal antibodies that are not tested for, which is why I think Dr. Cunningham uses the cam kinase more heavily than the specific anti-neuronal targets. It would be interesting to see a comparison for syndenham chorea subjects that have had complete recovery, versus those that have refractory(treatment resistant) OCD- which I believe about 20% have according to an old research article I read.
  13. Years ago when we were first discovering pandas and what it meant, I came across an article/post by a mom who wrote "my child seems to be repulsed and disgusted by my presence, yet is so needy he can't be separated from me for more than a moment". That was very similar to my child too.
  14. Did Dr Agaliu say anything about when he may publish something? Or Cunningham? The past several conferences (several years worth)) they were in the verge if publishing - and it's been so long. It's so frustrating. Dr A has only been working pandas for 2(?) years or so-about .but Dr C has had thousands of blood samples from years of research. I am the biggest fan if those two- the raw science and data is what will ultimately lead to acceptance and the best, most targeted, treatments, but they need to get it out there to the medical community.
  15. I'm so happy for you qannie47! Thats fabulous news! this is a very interesting topic - I wonder if the lumbar punctures that Dr Swedo is doing as part of the study is testing for these bands, and their correlations to Dr C's tests. Could this be the definitive test for all of us to get insurance approval? Anyone else had a puncture that measured "o bands"? (whatever those are!)
  16. What confirmed it for us was ultimately the "pandas test". Thats the kind of proof I needed in order to proceed with IVIG (because that frankily was very scary to me). My son did not have strep or raised titers, so his diagnosis was not as straight forward as some. Moleculera Labs does the testing. At the time this test was a "study" being run my Dr Madeleine Cunningham - a well know researcher that studies auto-antibodies. You can learn more about the test, Dr C and the anti-bodies by googling her and searching this site. The used to refered to as the "Cunningham test" (its actually a panel of tests). Here is a link to the site with test info - http://www.moleculera.com Good luck!
  17. No experience, but did hear a conversation on NPR about it a couple days ago. I would look on the Marfan group website for experienced doctors near you.(sorry they talked about the site and the foundation (?) that runs it, but I wasn't paying too much attention. The show maybe in their archives. Is it genetic? If so that would be simple test for diagnostic confirmation.
  18. Correction Meriva from Thorne - http://www.thorne.com/articles/meriva.jsp
  19. We've used Minerva-it's a liposodal curcummin. I think the research indicates your need massive amounts if turmeric to make a difference. I've cooked with my neighbor from India(awesome food) they buy bags of turmeric-(like 5lbs!) and they cook with handfuls. Everyday. That's what you need if you want benefits using turmeric- not a tiny pill of it. I can't remember the cost, but you can google it. We didn't use religiously, I used it during flares instead of, or along with Advil, but when we started we did almost everyday for a while.
  20. I'd have to agree with Airial95, on the IVIG. He appears to be about 3 months post. You mentioned Dr. K, so he probably had a slightly lower dose- 1.5 instead of 2.0. No one knows if that .5 makes a difference. And even Dr K would probably agree that if he is still having severe exacerbation a at this point, he may be one of the kids that needs more than one dose, (and maybe the 2.0 dose- that's my addition). Also- I think our kids run the gaummut of phychological symptoms- including Bipolar. They can appear OCD, Depressed, Tourette's, Paranoid, Anorexic, ADD, Autistic, even psychotic, and probably some we don't even have names for (my son has Misophonia, most docs have never even heard of it) - my son has had all if the symptoms to be in about 6 different diagnostic categoies. And, they rotated over time. For example first 2 years- tics. Now, never tics. Still PANS though! He's not 100 percent better. And as I've said things have changed over time. How much is due to the various treatments and how much is due to time is anyone's guess. But my guess is that IVIG ( he's done 2- but very far apart and only dose if 1.5) was huge factor in improvement. IVIG is like stopping the hemoraging. You still need to complete the operation. Your childs immune system. This is the extremely difficult part. They can have various chronic infections and personal sensitivities unique to them. Strep is only the most easy to diagnose- and it may be present ( because if you go into ANY third grade classroom and give them throat cultures in the winter, about 20(or is it 30) will culture positive and/or have a positive titer. And this can be misleading, for example we chased strep but my sin also had mycoplasma.We didn't even know about the mycoplasma for first two years. my son was on various high dose antibiotics for about 3 years. He had a rising mycoplasma titer that final turned around on the right antibiotic and Supplements. A huge help in brining that down was the right supplements. It went very, very slowly down on high dose Doxycycline. Then after he started Vit D3, and some special B vitamins, it went down drastically- and this was OFF antibiotics. Thats right- no antibiotics. In order to test to see if his titer would go up (only way to know if his infection was still active) I stopped the antibiotics. We tested him his IGG was something like 2000 ( still really high, but down from almost 3000 18 months previous). Then stopped antibiotics and had started the Vit D and methylation supps ( the Bs) (full disclosure- did occasional other herbs- like EGCG, and supps but not consistently ) that was coincidence, not a plan, and he was not on any anti-microbial supplements. We re-tested his MycoP after 3 months. It was down to 1100. Coincidence? I think not. My son has stopped reacting to viruses ( used to have huge exaverbations retirn of all symptims)-and getting them much too. IVIG? Vit D? Supplements? Immune system maturing over time? All of the above? He's not 100% better though. He still has debilitating misophonia, irritability- moodiness, anxiety. Every day. It's his baseline now. We will be doing another IVIG in December. This time a 2.0 dose, and this time, if he's still symptomatic in any way a few months later, another one. On another note- my son also had Cam Kinase (Cunningham panel ) of over 200. That was recent- not exacerbating. He was 176 3 years ago prior to first IVIG, and 130 4 months post first IVIG ( with almost no symptoms at that time- we were very hopeful at that time we were done, but he was still having shorter lived "mini" exacerbations like your child) According to his immunologist his immune system has a number of unexplained anomalies, but I'm now hopeful that this round, coupled with stronger, "cleaner"(no mycoP) immune system will be able to maintain the gains that IVIG has given him in the past. He's also on the verge of puberty- 14 yr old boy- so hoping that facor will aid him as well. Hang in there. It's can be a long road. My son is so much better than he was, even with his baseline being unacceptable. If you take anything away from my experience and he other posts- test for every conceivable infection and target them, get a good integrative doctor to test methylation and vitamins and do another IVIG. You can do all 3 of those things at the same time. I did them sequentially... And each one worked a little bit- but they would have worked better and faster together.
  21. Also- they usually approve for low dose IVIG. Definite discussion with your pandas Doc about low vs high.
  22. Beth, That's a very good question. And somewhat open to interpretation. There's a blood test available from Moleculera labs- that, along with meeting with a doctor that's a pandas expert- there are only a few of those, whike there are more and more docs that help treat- your case is more complicated without the "sudden onset" is see an expert. And check out Moleculera Labs- new lab run by one of the premier pandas researchers. Best if luck, and post of you need help finding a good pandas expert in your area.
  23. Doxycycline, vit D and methyfolate. ESP. The doxy. High doses for Almost 2 years, but did take breaks because its tough in the stomach, and has high probability of sun sensitivities- so went totally off for the summers. DS titers were super high- 2960 ( norm under 300). Went slowly, slowly down- until he started hi dose Vit d and methyfolate/b-12 supps( not very high does, but every couple days - all he could tolerate) and the the titer dropped apprix 50% in 3 months. He was off all antibiotics those 3 months. Was also taking some EGCG ( green tea extract) and occasional curcummin...yucca. Good luck- it's a tough one. DS still has pandas, but more stable, fewer exacerbation does not seem to get sick much at all any more (d 3 most likely helped with that- not that he was sickly, he wasn't, but would exacerbated for 2 months after the sniffles, so every cold was devastating). Planning another IVIG soon.
  24. Great find Peglam! Thanks for posting. It's a very small study, and very specific to strep, and Turkey, but exciting to see they are looking at this in our kids. I guess Turkey has a lot of untreated strep, (according to the article) and maybe a genetic variation in their population (my interpretation if the data- since only done on Turks). Go to the SNPepedia page LLM references above (thanks LLM!)- having the AA allele is associated with a number of risk factors, as well as even some benefits(lowered risk if MS) And- if you read the psoriasis summary- if you have the AA allele and you're polish you have increases risk, but if you have the allele and you're Irish, decreased risk. My pandas son does not have the AA allele. Our whole family is GG. Having the gene may put you at higher risk for getting pandas ( especially if you are Turkish, and have strep as trigger) - but it's just a risk factor. This looks like somewhat common. It isn't one of those gene mutations that mean you definitely have or will get a disease, for those of you reading that haven't done any genetic testing/research. Great find. We're getting there!
  25. Thanks for posting LLM. Not sure all that was said in the thread since it was edited, but I find this articulate young man's message very relevant, and I plan to read his book. Almost all our kids have OCD, weather it's for weeks, months, years, or life, and insights into their world and how to support them as parents is always helpful.
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