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  1. Like
    LNN got a reaction from prestopony in homeschooling/schoolwork and pandas   
    Welcome to the forum and "welcome" to Pandas/Pans. I've unfortunately been at this for many years, first with my now recovered son and now with my daughter. I home schooled my daughter last year because her health was too precarious. Because it was only for one year and we always had the intention of returning to public school when she was able (for social reasons), our approach was probably different from yours. But I'll share what worked in case it helps.
    I think the biggest thing that was helpful was mindset. Like your daughter, mine went from being very capable to being very handicapped in what she could handle in terms of workload and abilities. There's a medical reason for this - inflammation in the brain creates what's called a cytokine storm. There are many inflammatory cytokines that become elevated, but one - CaM Kinase II - is essential for learning and memory - from Wikipedia:
    Ca2+ /calmodulin-dependent protein kinase II (CaM kinase II or CaMKII) is a serine/threonine-specific protein kinase that is regulated by the Ca2+
    /calmodulin complex. CaMKII is involved in many signaling cascades and is thought to be an important mediator of learning and memory.[1] Misregulation of CaMKII is linked to Alzheimer’s disease, Angelman syndrome, and heart arrhythmia.[6
    We had bad days and worse days. Some days, she was able to learn in a fairly typical manner and other days, it was like teaching someone who had suffered a brain injury like a stroke or car accident. So the most important thing I did each day was to feel out where she was at, what she was capable of that day (and I also had to realize that every day might put us at a different starting place, and sometimes she'd have different capabilities throughout the day). Re-setting my expectations on the fly was essential. Otherwise, I'd expect too much, she'd stress over disappointing me and over her own sense of loss. Much like working with someone who's in rehab for a stroke - how frustrating it is to not be able to do things you've easily done for your whole life.
    So forget about what she used to be able to do. Forget about what her brother can do. These are, for now, false points of reference. Start each lesson by assessing where she is at that moment and work with that. Do not show your frustration or expect more than she can give. That just blames her for something that's not in her control. You wouldn't do that to someone in rehab. You can push the way a cheerleader might - "hey, do you think you can do one more problem? No? Ok, take a break, you did a good job." But don't push with the thought that you can somehow push her back into being her old self (spoken from experience).
    My daughter (12) reads at a 12th grade level. But there were many times she couldn't focus on the words on the page. But she could listen. So I'd read her social studies book to her while she doodled (drawing helped her stay focused, ironically, because it's something that relaxes her and it distracted her from her anxiety). Then she'd answer questions about what I'd just read to her. Sometimes she could write the answers herself, sometimes I could see from her horrible handwriting that I'd have to scribe what she verbally told me. We just had to be flexible. We did a lot of verbal discussions. We broke lessons up into very small chunks - sometimes as little as 5 minutes. Then we'd re-group 15 minutes later, or an hour later, or a day later. I had to let go of my scheduling, my goals, and just listen to her body and support her. The old her was temporarily gone. I had to teach the person who showed up that day and just help that person do her best for that day. Not easy for a Type A mom. But it's what she needed.
    She is back in school this year, on a modified school day, with many absences (but for social reasons, she is adamant about being back in public). We often find ourselves having to do do school work at home to make up for missed days, and our approach is to do things in very small chunks. When she's feeling well, she takes pride in doing things independently. When she's in a bad place, I sit with her and coach her every step of the way. It's very much a teaching-as-if-you're-a-rehab-therapist approach.
    The amazing thing is that once the body heals, the old child comes back. You don't need to worry about her getting lazy or developing bad habits. No one wants to get back to her old self more than she does. When she heals, she will return to the independent, curious child she's been.
  2. Like
    LNN got a reaction from MomWithOCDSon in Need Help   
    My son had Lyme/Pandas and a month-long steroid taper helped him immensely twice, and did nothing once, over the 5 years he battled his illness. Our LLMD isn't a huge fan of prednisone but does recognize it has it's place for Pandas kids.
    Like your son, my daughter was in her darkest days yet had no definitive infections. She did have Marcons - you may want to ask about that. I may never know what exactly she was fighting, but I do know that a combo of bactrim and zith and prednisone saved her. Low dose naltrexone was also helpful. She has struggled immensely from mold issues - mold in her elementary school and now her Jr High. Prednisone isn't recommended for mold situations either, but desperate times called for desperate measures. She recently started Zoloft and although I've tried everything I could to avoid it, she does get relief and is glad she's on it. Inositol, Ashwagandha, Bacopa and looking into how your genetics affects methylation are also options for reducing anxiety.
    Cognitive behavior therapy wasn't hugely helpful for my daughter, but now that she's a little older, she's having great success with EMDR. So something to keep in mind as your son gets older, if he continues to struggle with anxiety.
    I know it feels like this will never end - and it is a grueling journey. But my son "grew up with" MomWithOCDSon's son - and he's now the healthy, obnoxious teenager I always hoped for, while her son is enjoying college. My daughter's journey has been harder and more complicated, but she too is making progress. So don't lose hope. Our kids do get better. But first they need to eat
  3. Like
    LNN got a reaction from MaureenL in Request for success stories please!   
    Yay Kath!! So happy to hear!
    We too seem to be out of the woods. It took a long, long time and a lot of money. It was more than strep. It was more than lyme. It was a half dozen things that all intertwined. But both kids came out on the other side and seem to be holding on to the good place they've been in for quite some time. I actually seem to have achieved a long time goal and weaned myself from this forum - a place that was once more essential to me than air. I know it feels like it may never happen, but if you keep digging, keep believing in your child and in yourself, recovery does happen. Hang in there!
  4. Like
    LNN got a reaction from MountainMom in Need Help!   
    It might help you wrap your head around what's happening by considering that you have PANS, not Pandas. Pandas is an autoimmune response to strep. Pans is the same thing, except in addition to a strep trigger, it can also include Lyme, co-infections (e.g. Bartonella), mycoplasma, and viruses. Both Pans and Pandas come with the OCD, anxiety, tics, sensory, urinary issues, brain fog, temporary loss of academic skills, etc.
    So you may have resolved the Pandas triggers, but by treating the Lyme, you're now experiencing a Pans type of herx, which is more neurological than physical, but stems from the same toxins and inflammation of a herx. And yes, yeast die-off can contribute to the herxing.
    There are a couple of options. One is to focus on detox - bentonite clay or charcoal as a binder of toxins (taken away from any antibiotics, supplements or other medications), epsom salt baths if tolerated (some people find them relaxing, others find them irritating). Motirn or tumeric or a hogh quality resveratrol for anti-inflammatory. Alka-selzer gold (must be gold - available on Amazon). Taking yucca root or ornithine can help with the yeast die-off. Yeast die off releases aldehyde, which gets broken down to ammonia - a neuro-toxin. Yucca and ornithine can help lower/eliminate ammonia.
    Another option, which can be done instead of or in addition to the above (with your doctor's ok), is to either reduce the dose of your antibiotics or pulse it - i.e. take them 3 days on, then 4 days off, or take them 7 days on then 7 days off). This gives your body a chance to rest and clear herx byproducts away between waves of antibiotics.
    If you're interested in using herbs, you can also consider Dan Shen http://latitudes.org/dan-shen-become-important-treatment-pandaspans/
    which can help close the blood-brain barrier and reduce Pans symtpoms. At your age, I'd take the higher end of a dose (e.g. 1/2 to 1 tsp 3-4x/day).
    Also, be aware that for some with Lyme-triggered Pandas/Pans, IVIG is helpful. For some, it produces a pretty significant herx. You're basically super-charging your immune system and it will attack the Lyme using donor antibodies - antibodies your own body may not have been able to make enough of. So it could cause a lot of inflammation while the flood of new antibodies attack the Lyme infection. Managing inflammation will be key.
    Will you be able to return to school (I assume you mean in January?) Hard to say. But from my own experiences with two Pans kids, there's no way to get healthy without going through the valley of death. Trying to go back to a normal life won't be possible until you tackle the Lyme. So simply stopping Lyme treatment might buy you a month of two. But your Pans symptoms probably won't resolve until you push through the Lyme treatment. You can do so in a gentle, slow manner to minimize herxes, or you can go for a full onslaught of treatments, but one way or the other, you will probably have neuropsych symptoms until the thorn is out of the lion's paw for good.
    I do hope you're taking a good probiotic (at least 30 billion CFUs) taken 2 hrs away from antibiotics, to help your gut health.
    The good news if that yes, eventually, you can get back to a normal life. It took my son several years to beat Pandas/Pans and Lyme, but he's been off all medications for 3 years and now only gets a slight "off" feeling when he gets a bacterial infection in the winter. A round of antibiotics or a week of herbal antibiotics gets things right again and normalcy returns. So have hope. It may take longer than you wish, but once you get rid of all underlying infections, you can get your life back.
  5. Like
    LNN got a reaction from Rudy6897 in Question about a consultation with Dr. Trifiletti   
    This seems to be a common issue among some of his patients. If you search the forum archives (search bar is in the upper right corner of the page) under "Dr T" you may find previous discussions on the matter. The forum generally tries to avoid doctor bashing and if this thread turns too negative, it will likely be locked at best or taken down at worst. So if others have strong feelings, it's best they contact you via personal messaging (again, look to the upper right corner under your login name to access your mailbox).
    Many doctors seem to have polarizing effects on the Pandas parents - some love a particular doctor and get defensive when shortcomings are pointed out, while others feel compelled to share their negative experiences as a warning of sorts. The complaint about not being able to contact a doctor for follow up is a common one not limited to this doctor. But that doesn't excuse the behavior. You paid for a consult and were given a promise directly from him that he'd get back to you with instructions. You are not asking for something you didn't pay for or that he didn't offer to provide. Enough time has passed and you're entitled to the guidance you have a right to expect, IMO. I would call, every day if necessary, Stay professional and respectful but also persistent. However, if it proves to be too much work to continue the relationship, then it may become time to consider other doctors.
    In the 6 years I've been on this journey, I worked with 3 different specialists and had passing conversations (at conferences) with two others until I found the right partner. Each has their strengths and weaknesses. This is a bit like dating - a matter of finding the best fit. Each doctor has a different perspective on this disease and how wide a net they're willing to cast in terms of testing and treatments. The right doctor for you will be the one who's willing to look in the right place, given your daughter's symptoms/history.
    I would continue to contact Dr T for further guidance/lab slips but also clarify whether there will be a charge to review the results, or ask if the results can be sent to your family physician. If you ultimately decide to seek another doctor, you may want to post the things you're looking for - do you want mainstream or integrative or naturopath or homeopath? Do you want someone who can do IVIG? Do you want long term antibiotics or would you prefer to use naturals? What geographic area can you travel to? Then people can message you with their own experiences.
  6. Like
    LNN got a reaction from Sham7rock in Cognitive effects of PANDAS   
    My son struggled with Pandas/strep/lyme/mold from the ages of 6 to 12. It took him about 2 yrs to fully recover his cognitive/academic abilities. He went from an "IQ" (using a crude standardized test) of 93 to 116 and I suspect he'd score higher if tested now. The tests showed large discrepancies between his verbal abilities and his spatial math abilities. These have narrowed as he's recovered.
    Two things, in addition to fighting infections, really helped him academically. First, he was diagnosed with pyroluria - a zinc/B6 deficiency caused by his body produces excess pyroles, which are a waste product in the body's production of heme (blood). Pyroles bind to zinc and B6 and as your body eliminates the pyrole waste via urine, you end up peeing away zinc and B6, creating a deficiency. Taking a very high dose of zinc/B6 helped almost immediately (we use the supplement called Core by Biopure) and he will probably continue to take it well into adulthood.
    The second supplement that helps is phosphatidylserine. He takes PS10 from Jarrow. It plays a big role in concentration and focus. Phosphaytidylserine is one of the primary ingredients in Vayarin - an ADHD medication. He only takes it during the school year and it's not habit forming.
    I also try to remind myself - daily - that my role is to help my kids grow into healthy adults - mentally health, physically healthy, emotionally healthy. Grades are way down on my list. Life is filled with "grades" - even beyond academics. But what matters is helping my kids believe in themselves and to not focus on external judgments. If he's not ready to handle a traditional high school, there are online options, homeschooling, etc. Many ways to have a "successful" life. Sounds like your son has great support from you. Don't underestimate how important that is.
  7. Like
    LNN got a reaction from Sham7rock in Treating OCD with Minocyline   
    Yay for your oldest!!! Like yours, mine is off meds (3 yrs now) and an academic success. The kid who we once argued about holding back is an honors student and headed into HS next year, complete with obnoxious teen attitude. I used to tell people that because they're supposed to outgrow pandas, I was the only mom I knew who looked forward to having a teen. I should've known better! But at least it's normal stuff and I'm happy to turn gray over simple things.
    Like you, my youngest is struggling. Thankfully OCD is minimal but she's often a stunt-double for Linda Blair in the Exorcist. She's just about mastered the head spinning completely around and instead of hurling projectile vomit, she hurls insults and irrational accusations. She battled mold issues in school last year - almost landed her in the hospital twice. So she's homeschooled this year - something we never imagined doing. The issues from last year took a toll on her and in Nov. she crashed, developing a range of neurological issues. Still trying to dig out of that hole (lab results pending for a variety of things). But...with every suckish challenge, there are gifts. Homeschooling has been an awesome experience - her self-confidence has returned, she's able to move at a pace that's good for her health, and no skeptical administrators to make us feel defensive and stressed. She's developed a full range of creative interests and is considering homeschool next year, whether her health requires it or not.
    So I feel like I'm 80 yrs old, but at least we can both look to our first borns and know it can be done! I hope your journey starts to get easier - you so deserve it!
  8. Like
    LNN got a reaction from bobh in PANDAS and LYME in siblings   
    Given your kids' histories, I think it's very reasonable to suspect that there's a common infection, as well as possible genetics, that link your family's health issues. It could be Lyme (either congenital or from all of you being exposed during a shared hike or trip to an endemic area) or mycoplasma, which is highly contagious, or both, or these plus some other shared infection.
    It can also be that some of the mutations in the genes your family shares are contributing to the way your bodies are handling the strain.
    The first place I'd put my money is on seeing an LLMD (lyme literate MD). Initial visits are costly, and most don't take insurance, so you have to pay out of pocket and then submit your own claim for hopefully partial reimbursement. But these doctors specialize in chronic infectious diseases that can affect a variety of systems (endocrine, immune, gastro, neurological, etc). And they tend to be good at seeing things from an interconnected perspective instead of specialists who only look at one body system in relative isolation. They're good problem solvers.
    If finding or seeing an LLMD isn't something you can do quickly because of where you live, then I'd at least see if you can get Lyme tests for your 12 and 6 yr olds, preferably from Igenex Labs, as they test for lyme-specific bands that other labs don't test for, and can potentially catch cases other labs would miss.
    Finally, you might consider testing thru 23andMe, which consists of getting your kids to spit into a vial. You then get genetic data that can help you understand how their bodies might be struggling to make and balance neurotransmitters. Your 6 yr old might benefit from some supplements like niacinamide (flush-free niacin aka Vitamin B3), which for some people with genetic COMT mutations, can help them process/degrade adrenaline better and help them calm down more quickly (less rage/meanness).
    Both 23andMe and Igenex used to have special pricing for testing multiple family members at once. You can check to see if that's still the case.
    Follow your instincts. It seems very possible that there's a common link. Good luck!
  9. Like
    LNN got a reaction from Jaysmom in MTHFR gene impact on OCD/PANDAS   
    Since your DS is +/+, his body is struggling to convert any form of folic acid or folinic acid into methylfolate (+/+ means he's probably only converting about 10% of the raw stuff into the end product of methylfolate).
    You need to introduce both methylfolate and some form of B12 (cobalamin) - since these work as co-factors and you need both as part of your supplement plan. You want to avoid synthetic folate (found in cereals and other fortified foods and most multivitamins).
    I'd start with this product http://www.holisticheal.com/methyl-folate.html
    because it's a liquid and each drop is 67mcg. So you can build up slowly and drop down quickly while you tweak dosing. Later, you can switch to a tablet if you find he does well on a 400mcg or 800mcg dose. If he needs more than that, you can get a prescription for Deplin, which comes in 5mg and 10mg doses. But for now, start with 1-2 drops/day (I put mine into a small dixie up of water). Do this for a few days.
    Then add a sublingual B12 tablet. Any B12 that's swallowed doesn't make it into the blood stream - most of it doesn't seem to make it past the stomach acid. It's estimated that about 10% of a sublingual will get into your blood stream. So dissolving a tablet of 3000mcg of cobalamin will get roughly 300mcg into the blood stream. There are 4 forms of B12 - cyanocobalamin, which is the least desirable form and not very useful to the body. There's adenosylcobalamin and hydroxycobalamin -which is tolerated by most people. And there's methylcobalamin, which is good for people who are true undermethylators really need methyl groups. Which form is best for your son is going to be a matter of trial and error. If you happen to know the status of his COMT gene, this can help. But if you don't know it, I'd start with either 2000-3000 mcg of adeno or hydroxycobalamin. I'd start with one of these
    or https://www.seekinghealth.com/hydroxo-b12-60-lozengesor
    Later, you can try methylcobalamin or different doses of any of the above to see if you can improve results. But these suggestions can get you started.
    Start with a low dose of methylfolate (maybe 150-200mcg) and a few days later, add in a sublingual form of B12. Do this for a week. If you see nothing, or if you see improvement to mood, increase the dose of methylfolate to maybe 300-400mcg for a week, and assuming you still see improvements, keep increasing dose until you start to see "bad" mood stuff creep back in. Then, if you start to see mood swings or mania, stop both the methylfolate and B12 for a few days to let things "drain". Then re-start at the last dose where things were good.
    While you're tweaking dosing, if you "overdose" on the methylfolate, you can give 100mg of niacinamide (vitamin B3) and this will quickly (20-30 min) soak up the extra methyl groups. Niacinamide is also useful any time you get rages. https://www.amazon.com/Source-Naturals-Niacinamide-Vitamin-Tablets/dp/B00020I7IU/ref=sr_1_2_a_it?ie=UTF8&qid=1489360057&sr=8-2&keywords=source+naturals+niacinamide
    Hope this helps
  10. Like
    LNN got a reaction from Gpookie in Is there any way to make a herx less likely? Serious   
    Gpookie - Wombat is having an anxious reaction to a particular word used in Ryan's post and it triggered anxiety around similar word I used in my post. I've edited my post accordingly.
  11. Like
    LNN got a reaction from wisdom_seeker in Lyme people: cross-reactivity of Western Blot?   
    Most people would tell you to do your homework (as you're doing) and then trust your gut and your experiences as to whether Lyme is your culprit and whether you should continue down that path. Labcorp is among the least reliable when it comes to results - at least from what I've gathered in my years of Lyme research. But if you've done the protocols - rotating abx, combo abx, etc - and haven't seen results, then I can understand your reservations about cross-reactivity.
    But here's my take away - these tests are showing an immune reaction to some sort of infection. And you have enough of a clinical picture to believe that some sort of infection is triggering neurological and psychiatric symptoms. So if not lyme, if treatment for strep and myco haven't brought you sustainable gains - then what's the trigger. And that may be a really hard quest.
    I can't tell you if you should stay the course or not. I can only share one word of caution/encouragement. Most people on this forum know me from my years of advocating for my son. My daughter was always, in my mind, borderline Pans and was more of a mold story. Then, last year, she became seriously ill, but with symptoms that went beyond my understanding of Pans. It included enormous sensory issues, an inability to wear clothing due to "neuropathy" for lack of a better word, hearing and taste disorders, and a temporary inability to walk accompanied by elevated ANA. A short course of antibiotics helped her walk, but did nothing for her other symptoms. Herbal antibiotics kept issues manageable but didn't seem to make a dent in the overall picture. A 5 day course of prednisone did't make a dent. So after months of looking for that needle in a haystack, we stopped everything and started treating DD's issues as perhaps "garden variety" mental health issues. Well, the s**t hit the fan and DD fell off a cliff. What I thought were ineffective treatments (e.g. the herbal antibiotics) were actually the only thing that was keeping my DD from going totally insane. When she did fall off the cliff, she developed severe anorexia, panic attacks and became a basket case - and it all happened in the blink of an eye. Faced with hospitalization and a feeding tube, we were able to get combo abx, a month-long steroid taper and a team of medical, therapeutic and school staff all on board without the usual skepticism. The turn around was thankfully miraculous, though the healing will take a long time.
    So my only caution is to not throw the baby out with the bath water. You may not have gotten the breakthrough you're seeking, but the things you have on board may be doing more than you think. It's discouraging to not know what infection you're trying to treat. It can make you question your course. But don't quit before the miracle. Those labs are showing something. Keep fighting for your child.
    I hope you see good things from IVIG - good luck!
  12. Like
    LNN got a reaction from Jennyjumpup in Question about a consultation with Dr. Trifiletti   
    If it's any comfort, your story sounded like mine in many ways. Sudden onset changes, passionate rages, temporary improvements, feelings of despair...you'll find lots of parents here that understand what you're going through.
    My son got sick when he was 5. It was probably triggered by a known tick bite on his scalp that we didn't pay much attention to (something I deeply regret in hindsight). We saw erratic behaviors, extreme anxiety, OCD - but didn't know what to make of it. Then he got better for two months and we shrugged and moved on. Then he got strep and went off a cliff. We asked about Pandas, asked for antibiotics beyond the 10 days prescribed and were told Pandas was controversial and the 10 days would've done the trick if it were Pandas. Then we were offered Prozac, Tenex, Haldol and Risperdal - for a 6 year old! Fired several doctors and pleaded with sympathetic walk-in clinic nurses for 10 days of antibiotics when things got awful. We then spent 3 yrs seeing Pandas experts, using long-term antibiotics, prednisone, tonsillectomy, plasmaphersis, IVIG - all helped but only temporarily. We could get him better but couldn't get him to stay better. A standard western blot lyme test was negative. But we finally used Igenex to test for lyme and that was our missing piece.
    We started seeing an LLMD (lyme literate MD) and within 3 weeks of using a combination of antibiotics (abx), rather than monotherapy abx (only one abx at a time), we knew we were on the right track. it took 2 more years to get rid of the lyme because he'd had it for so long, but while there were setbacks, we saw progress that he was finally able to sustain. In my son's case it was both lyme and Pandas that we had to treat. He's done with lyme treatment but will still have a Pandas response if he gets a bacterial infection. But we put him on abx at the first signs of symptoms and he's usually back to normal w/in 2 weeks now - a far cry from the old days.
    Given that your daughter has known deer tick bites, I'd urge you to go to the top of the Pandas/Lyme forum home page and scroll down to the Pinned Thread for Lyme and read thru them, especially the links to articles about lyme testing http://latitudes.org/forums/index.php?showtopic=10804. In lyme literature, you won't see the neuorpsych symptoms discussed much, which makes it seem like your kid can't have lyme. It doesn't seem to match. But the reason Pandas was renamed to PANS a few years ago was because many of us were finding that our kids had Pandas except that the trigger was lyme, or a virus, rather than strep. There's also research showing that lyme and strep share some proteins so that they look like the same invader to a confused immune system. One protein in particular - an M protein - is also present on cells in the Basal Ganglia of the brain (thought to be the target in Pandas and sydenham's chorea) and in cells in the aortic valve (which is what causes the immune system to attack the heart in rheumatic fever)
    With your daughter's intense rages and chronic struggles and tick bites, I'd put lyme testing at the top of the list. You may want to start a new thread asking for Lyme friendly doctors in the VA/NC area or go to Lymenet http://flash.lymenet.org/scripts/ultimatebb.cgi and ask for referrals for a pediatric LLMD in your area. Kids are not adults in little bodies. They require a doctor with a pediatric background - and they are hard to find! You may need to travel farther than you'd like - and most have waiting lists of 3-6 months. None take insurance because they feel they need to spend more time with a patient that insurance will pay for. But you pay out of pocket and then submit your own claim to insurance and sometimes you can get reimbursed at the out-of-network rate. In the meantime, you can try to get a local dr. to order the igenex test for you.
    You can also try to have the ASO/AntiDNase B titers done, but since your daughter was already negative once, it may not be positive even if she has active strep. Some kids, like my son, don't produce a positive titer test even when you know they have strep (he had a positive throat swab but negative titer test 3 weeks later). Because treatment for chronic lyme is long-term combinations of abx, if strep is a part of the picture, you'd be tackling both infections. But simply treating strep w/one abx wouldn't be sufficient to treat lyme. Some people have also treated successfully with herbs, but the first step would be to see an LLMD and get appropriate testing.
    One reason your daughter may have temporarily improved on vitamins is that any chronic infection will deplete the body of resources. Vitamins and supplements become really important, but aren't enough in and of themselves to keep the body in a good place. Antibiotics are needed to help the immune system get the job done.
    It took 5 yrs, but my son is now a very happy, healthy kid. He went from having a teacher think he was autistic and cognitive testing at borderline below normal to someone who's lowest grade is a B+ and is testing above normal. Rages are gone, OCD is gone, life is good. It's a matter of finding that needle in the haystack and getting the right doctor to help you on a long journey. PM me if you'd like to talk offline.
  13. Like
    LNN got a reaction from MomWithOCDSon in Is remission possible?   
    Yes, remission is possible and is often achieved. You won't hear about it on forums because once people are healed, they move on and no longer live on forums. My son was stricken with Pandas and Lyme at the age of 6. He underwent many, many treatments and finally came out on the other side. He's 14 now and Pandas hasn't significantly impacted his life in about 3 years. About once a year, some nasty bacterial bug will pass thru school and he'll come home not feeling "right". He'll take an herbal antibiotic for several days and the Pandas stuff never has a chance to mushroom into something. Other than these times, he's 100%.
    I think the key is find/treat your trigger, realizing it may not always be strep and it may not always be just one thing. Along the way, my son had to battle strep, Lyme and mold, plus some nutritional deficiencies. Now that these are addressed, he's able to enjoy physical and mental health.
    Remission doesn't just "happen" - just like anyone who achieves great things, like an athlete or entrepreneur, reaching a goal takes a lot of hard work and perseverance. But it is absolutely attainable.
    Best of luck!
  14. Like
    LNN got a reaction from GMT111 in New Member - ABX working   
    I've been at this for many years, with two kids who are affected - here's my take on it-
    You contract an infection and your immune system produces antibodies against that infection. So far so good. Then those immune cells migrate into your olfactory bulb (which may happen in all people because the sinuses are a first line of defense for keeping intruders out). But in Pans kids, those immune cells (Th17 antibodies) find a weak spot through the cribiform plate (boney plate that separates your sinus cavity from your brain). Now those antibodies are on the wrong side of your blood-brain barrier, where they don't belong. The brain's immune system (glial cells) react to this invasion and create an abundance of inflammation. It's an attack against self, but an understandable one. Those Th17 cells shouldn't be in the brain. This is what makes Pandas kids different from other kids who get the same infection - that breach of the blood-brain barrier.
    Once this breach happens, other infections in addition to strep can trigger the same response, and now you have Pans. Research has shown that these Th17 cells can stay active even 2 months after an active infection has been cleared. But in my personal experience, once you clear the infection, the body settles back down and you see symptoms start to resolve.
    So from a practical standpoint, if the antibiotics have helped your daughter clear her infection, then stopping the antibiotics should be ok. But realize if her body now responds in a Pandas way, she will be vulnerable to additional Pandas flares when she gets future infections. At least until she passes thru puberty - and at that point some kids outgrow it and some don't but seem to get less sensitive, tho still reactive.
    Some kids who have repeated flares are kept on antibiotics prophylactically. Some are lucky enough to enjoy long periods of being infection-free and can just go on antibiotics quickly at the first signs of behavioral changes and the horse is put back in the barn without long periods of disruption. But the key is to react quickly without relying on strep tests or "proof" on a new infection - because once you have Pandas, it can be many other infections that trigger the same immune response. And even then, one antibiotic doesn't work on every bacteria (e.g. mycoplasma or lyme need different antibiotics than strep) and it doesn't work if the trigger is a viral or fungal infection (yeast, mold, colds, flu). So for kids who have trouble staying healthy, this can be a more chronic situation.
    It's a delicate balance and you won't know until you stop the antibiotics and see what happens. If you see a return of symptoms right away it may mean that the infection isn't gone. If she seems back to baseline, then you'll need to be vigilant and hopefully have doctors on board who will allow you to put her back on antibiotics at the first sign of Pandas symptoms. But you should probably view this as a long term risk whenever she gets an infection. Pandas isn't a one time event. Once you have the condition, you stay vulnerable any time you have an infection, at least through childhood.
    But to leave you with a bit of hope...,my son developed Pandas when he was 6. Over 5 years, we had to treat him for strep and Lyme and mold exposure that turned out to be in his elementary school. He spent 5 years on antibiotics. Then 2 additional years going on antibiotics at the first sign of symptoms. He's now 13 and has survived his first winter without any issues, even though he was sick several times. (we've switched to herbal antibiotics that I can have on hand and use quickly without needing to get in to see the doctor and he's old enough that he can recognize early feelings, so our ability to respond is much better now). But he also seems to be outgrowing his vulnerabilities.
  15. Like
    LNN got a reaction from wisdom_seeker in In crisis -- so afraid of hospitalizaton   
    Not in Maine - southern New England. Glad to hear he had a better day yesterday. Is he still on the minocycline?
    FWIW, my DD started a new nasal spray on Friday for her Marcons - vancomycin + itraconozole + edta. Saw an increase in flu-like pain, muscle pain, stuffiness yesterday. Saw big increase in OCD and anxiety today. So back to motrin every 6 hrs, and re-scheduled our day to remove things that are stress triggers. That seemed to help. Pretty sure it's herxing related. It does muck things up for school, to be sure. Makes getting thru the day, doing well on exams, so much harder. But I know from seeing my Lyme son go thru this for 2+ yrs, it's like a hurricane. The sun comes out afterward, and after the damage is cleared, there's rebuilding and she'll hopefully be in a better place.
    DS went from being a year behind academically to several years ahead. I went from having to help him thru every aspect of homework, had to read to him because he couldn't read and retain at the same time, had to heavily tutor and coach him for 5 yrs. Now, 3 years into recovery, all I have to do is nag him to get off the computer and do his homework. I have no involvement in the actual academics whatsoever and he's an honors student (9th grade). But to get to this point took enormous work and many set backs. So don't lose hope. They can get better.
    Do keep me posted. I can totally relate to the insanity you're living and the stress and pain you're feeling. You're not alone.
  16. Like
    LNN got a reaction from jan251 in IVIg dose, frequency, trough levels vs OCD response   
    I hadn't seen this article before - thanks for posting. I don't have solid answers to your good questions - only personal experience with one 1.5 g/kg infusion for my son, who had Lyme, which was undiagnosed at the time of his infusion. It was his severely negative, and prolonged, reaction to IVIG that led us to find Lyme, so a silver lining in an otherwise horrible experience. So thru my response, realize that I am biased and not a fan of IVIG as a treatment option unless the child has been thoroughly tested for triggers and just about every other treatment option has been exhausted.
    To my knowledge, the rationale for every 8 weeks doesn't come from research. Rather, it started back in '09-'10 when Pandas families were contacting Dr Leckman at Yale and looking for ways to get IVIG. He knew that Dr B had an immunology practice close by and did IVIG, so he referred the families to Dr B and Dr B started learning about Pandas. At the time, there were only a few doctors known to our community that we could turn to for help. So families started banging down his door. Somewhere in this early period, he started recommending that the procedure be done every 8 weeks. I can't say why he advocated this. I can only say from personal experience that it wasn't based on waiting to see how the child responded to the first infusion. It was something he felt should be done every 8 weeks regardless of response. In contrast, Dr K, Dr L and Swedo were all recommending only one infusion and then monitoring for at least 3-6 months before deciding if another infusion was warranted. Was either position rooted in research? Probably not. There was very little research on Pandas and only one study on Pandas and IVIG. It was an educated guess as far as I can tell, for each position.
    For other autoimmune diseases where 1.5g/kg IVIG is used (e.g. Hashimoto's), only one infusion is generally done. Supporters of Dr B feel that his approach is right and has helped their children a great deal. Skeptics point to disappointing results from IVIG studies and a potential profit motive for such frequent treatments. There still doesn't seem to be enough research to support one approach over the other, or even to support IVIG at all. It surely helps some kids, and in some cases, dramatically. In other cases, it seems to do nothing or make things worse.
    Maybe this was the thing that prompted the study you posted. But I have two, non-scientific, biased quibbles with this paper. First, the paper cites 100% improvement. What does improvement mean? I know it says it's based on clinician assessment. But this obviously lends itself to bias - not only is it impossible to assess a Pandas child in a 20 minute visit, there is also inherent bias in a parent's reports. When I spent $$$ on plasmapheresis for my son (prior to IVIG), I wanted so badly for it to work. I minimized the negatives and hyper-focused on any little thing that gave me hope. So I'm not sure how much stock I can put into 100% improvement.
    Second, the paper suggests that IG levels are a good predictor of outcome. I would also wonder whether specific triggers/infections influenced the outcome. Do kids with Lyme or mycoplasma react more poorly than those with a strep trigger? Does it matter whether the child has an infection that's resolved or if it's still active? What other treatments were being given during the 12 months? If antibiotics or steroids or CBT were being used, did these influence outcome? In other words, would the kids who got better have gotten better regardless of IVIG?
    As I started out saying, I don't personally support IVIG as a therapy but I do recognize that it's been very helpful for some kids. I just don't know that this paper, or the NIMH study, make the picture clear as to what dose and what frequency might be helpful, and for which subset of kids.
    So to your question - I don't think anyone knows if 1 g/kg would be better, worse or the same as 1.5 g/kg. But if you do proceed, my personal recommendation would be to do one treatment and then listen to the body before deciding whether a second or third infusion is needed. It's a very personal - and lonely - journey.
  17. Like
    LNN got a reaction from BeeRae22 in Anxiety/psych meds   
    Beerae - right there with you re:not wanting to use SSRIs because it feels like you can never stop. But when my DD11 restricted her eating to 350 cal/day in Aug and couldn't function due to panic attacks, I relented. It seemed cruel to withhold something that had the potential to take the edge off such intense fear and pain.
    She started on Lexapro 5mg. It had the immediate effect of making her tired at night - and since her anxiety was keeping her up until 1 am and not allowing her to sleep after I woke for work at 5:30am, this in itself was a benefit. By making her tired, it also significantly cut down on panic attacks, since 90% of them happened at bedtime. But that said, I don't think it made a dent in the OCD, general anxiety or any other issues. She continued to fall off the cliff with other symptoms and continued to lose a dangerous amount of weight. Thankfully, we saw Dr M and he put her on steroids and 2 bx and within 36 hrs, she was a different kid - in a really good way.
    Because she still has issues, albeit far more manageable, I find myself in a position where I don't dare pull the Lexapro, or anything else, until she's back to her normal weight and much more steady. So yes, we are sort of stuck with it, even if it's not the thing that turned her around. I do wish I'd done things in a different order and avoided putting the SSRI in the mix, since it does complicate the picture. But...here we are and even if all it's doing is helping with sleep, that's not a bad thing. But once things have been stable for some time, probably next spring/summer, the SSRI will probably be the first thing I look to remove.
    You need to do what your gut tells you. If it doesn't help, you'll know you tried. If it does, then that's a good thing. But I totally get your concerns.
  18. Like
    LNN got a reaction from ibcdbwc in Anxiety/psych meds   
    Beerae - right there with you re:not wanting to use SSRIs because it feels like you can never stop. But when my DD11 restricted her eating to 350 cal/day in Aug and couldn't function due to panic attacks, I relented. It seemed cruel to withhold something that had the potential to take the edge off such intense fear and pain.
    She started on Lexapro 5mg. It had the immediate effect of making her tired at night - and since her anxiety was keeping her up until 1 am and not allowing her to sleep after I woke for work at 5:30am, this in itself was a benefit. By making her tired, it also significantly cut down on panic attacks, since 90% of them happened at bedtime. But that said, I don't think it made a dent in the OCD, general anxiety or any other issues. She continued to fall off the cliff with other symptoms and continued to lose a dangerous amount of weight. Thankfully, we saw Dr M and he put her on steroids and 2 bx and within 36 hrs, she was a different kid - in a really good way.
    Because she still has issues, albeit far more manageable, I find myself in a position where I don't dare pull the Lexapro, or anything else, until she's back to her normal weight and much more steady. So yes, we are sort of stuck with it, even if it's not the thing that turned her around. I do wish I'd done things in a different order and avoided putting the SSRI in the mix, since it does complicate the picture. But...here we are and even if all it's doing is helping with sleep, that's not a bad thing. But once things have been stable for some time, probably next spring/summer, the SSRI will probably be the first thing I look to remove.
    You need to do what your gut tells you. If it doesn't help, you'll know you tried. If it does, then that's a good thing. But I totally get your concerns.
  19. Like
    LNN got a reaction from mama4 in Klonopin or prednisone? intense anxiety before tomorrow's school start?   
    I found these videos and articles to be really helpful in changing my perspective on fear
    plus youtube videos of Stephen Porges discussing polyvagal theory
    and Paul Levine's Somatic Experience interview on how he uses the polyvagal theory to treat PTSD
    It's a way to understand the physical reactions the body has to stress and how to help it get "unstuck" . I'm also looking into using vagal transcutaneous electronic nerve stimulation (v-tens) to treat anxiety and depression triggered by vagus nerve hyperactivity.
  20. Like
    LNN got a reaction from GMT111 in Who treats adult PANS and will consult long-distance?   
    PMd you
  21. Like
    LNN got a reaction from Skye in Stopped methylation supplements - wow   
    Mama2 - when you list folic acid, what do you mean? regular folic acid? folinic acid? methylfolate? Why were you supplementing a megadose 3x.week and also folate plus folinic acid pus some in his multi? My DD takes 67mcg of methylfolate every other day. If she took this much, even of methylfolate form, she'd be evil and a complete blubbering, angry mess. So the first thing that jumps out is you may be using the wrong form and you are probably using way too much.
    I don't think you're giving enough B12 - it should be every day and with his VDR Taq ++ and MAO+ and COMT+/-, it should probably be hydroxyB12, not methylB12
    For your DS, I'm not sure the coenzymate B is the right blend. My son and I use this and like it a lot. But neither of us has MTHFR issues. My DD who does have MTHFR +/- wouldn't do well on this because it contains regular folate, which she can't process well.
    You list CBS +/+, so he should not be taking NAC or ALA. NAC makes my DD a flippin mess and it screwed up my liver enzymes and made me depressed (she and I are both CBS+/-). She takes CoQ10 as a separate supplement (be aware the CoQ10 comes in 2 forms. The better absorbed form is pricer).
    For CBS, it doesn't look like you're giving enough molybdenum. The CBS people in my family take 75-100 mcg/day.
    I can't comment on the TMG - have no experience with it.
    So I think it would be good to give his body a rest for a few more days, then slowly re-start with one supplement at a time. You know I'm an art major and not a doctor. But if you want to discuss offline, PM me.
  22. Like
    LNN got a reaction from GMT111 in Marcons ubiquitous and/or worth treating? references?   
    Here's the link to the paper https://www.jci.org/articles/view/80792/version/1/pdf/render
    and a summary
    Researchers have discovered how immune cells triggered by recurrent Strep A infections enter the brain, cause inflammation, and may lead to autoimmune neuropsychiatric disorders in children, including PANDAS. Children with PANDAS exhibit high levels of anxiety, motor and vocal tics, obsessive-compulsive behaviors and a host of other symptoms that often appear “out of the blue” or increase dramatically, seemingly overnight.Their study found that immune cells reach the brain by traveling along neurons that originate from the nasal cavity.
    This study explains, for the first time, exactly how upper respiratory infections can trigger both physical and neuropsychiatric symptoms.
    According to the study’s co-leader, Dritan Agalliu, PhD, at Columbia University Medical Center, the Strep A bacterial cell wall contains molecules similar to those found in human heart, kidney, or brain tissue. These “mimicking” molecules are recognized by the immune system, which responds by producing protective antibodies. But because of this molecular mimicry, the antibodies react not only to the bacteria but also to the body’s own tissues. The molecular mimicry process has been well researched by others. But previously, scientists didn’t understand how these autoantibodies would gain access to the brain, because brain vessels form an extremely tight blood-brain barrier. This study answers that question.
    Researches have known that recurrent Strep A infections trigger the production of immune cells known as Th17 cells, a type of helper T cell, in the nasal cavity. But it was unclear how these Th17 cells lead to brain inflammation and symptoms such as those seen in children with PANDAS. Through this study, Drs. Agalliu and colleagues found that bacterial-specific Th17 cells move along the surface of olfactory, or odor-sensing, axons that extend from the nasal cavity through the cribriform plate, a sieve-like bone that separates the nasal cavity from the brain. From there, the cells reach the olfactory bulb in the brain, which processes information about odors. The Th17 cells break down the blood-brain barrier and enter the brain,, allowing autoantibodies and additional Th17 cells to enter the brain, causing neuroinflammation.

    In addition to illustrating how PANDAS occurs, the study also validated some of the experiences many parents have had regarding their PANDAS children:
    Strep A is not the only trigger – Parents have often reported that infections other than Strep A seem to trigger PANDAS symptoms. This feedback was so abundant that researchers proposed making PANDAS a sub-set of a new, larger category called PANS – Pediatric Acute Onset Neuropsychiatric Syndrome. Unlike PANDAS, PANS does not associate the onset of symptoms specifically to a Strep A infection. Dr. Agalliu’s study shows that Th17 cells persist in the brain for at least 56 days after initial infection, even when nasal tissues no longer show signs of an active infection. “Several other bacterial and viral pathogens, including influenza virus, mycoplasma and Staphylococcus aureus (nasal staph infections) induce robust Th17 responses and could also play a role in an exacerbation of behavioral symptoms in children with PANDAS if autoantibody levels are primed by previous (Strep A) infections.” (pg 11 of article).
  23. Like
    LNN reacted to mama2alex in Great paper on mold illness   
    For anyone looking into mold illness, I just came across a paper written by an integrative doctor in Park Ridge, IL. It's completely based on Dr. Ritchie Shoemaker's work, but it's the most clear and concise explanation of the diagnosis and treatment of mold illness I've ever read.
  24. Like
    LNN got a reaction from mama4 in Herbal Treatment for Pandas   
    This was just published on the Latitudes articles section of the website. Thought it may help someone...
  25. Like
    LNN got a reaction from Trishb in Herbal Treatment for Pandas   
    This was just published on the Latitudes articles section of the website. Thought it may help someone...
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