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  1. 2 likes
    Hi Nrr Here is a site where you can buy Clerodendrum Inermis in USA http://www.kartuz.com/p/90153/Volkameria+inermis.html I`ll wait it help you.
  2. 2 likes
    Clearly, you'd want to look for infections. I'd set up an appt with your pandas doc (or whoever; really, any doc who will do it) to run some bloodwork ASAP, both for infections and immune system stuff, IgG levels and so forth. In the meantime, I'd haul the kid off to the nearest urgent care for a swab and throat culture today. It seems to me that this sort of situation is to be expected with PANS/PANDAS.
  3. 2 likes
  4. 2 likes
    Does anybody have any advice on how to get this plant in the US and also, if it will grow on the east coast where we sometimes have long winters. Will it grow indoors?
  5. 2 likes
    We did HD on both boys in 20014. The worst PANDAS symptoms dissappeared over night and never came back. After 6 or so months, they kept getting sick with mild flaring and also flaring on exposure. ID specialist and immunologist discovered hypogammaglobulinemia, possible CVID. LD monthly (.5g/kg for 6 months, stop 3 then 6 more months) worked wonders. No more flares, even when ill and on exposure. LD was the best thing.
  6. 1 like
    Wondering about your OspC. To quote Dr. Horowitz, "Borrelia specific bands reflect outer surface proteins on the surface of the organism that are seen more often in Lyme disease than in other infections. These bands include the following five proteins, each with different molecular weights (31, 34, 39, and 83-93) If any of these bands are present on a western blot, there is a high likelihood that the patient has been exposed to Lyme disease, especially with the right clinical symptomatology........." He also believes that "Lyme disease is a clinical diagnosis, and lab results serve to support the clinical diagnosis"...... Basically, a negative blood result would not indicate no Lyme. Also read in Cure Unknown, about the most accurate lyme indicating outer surface proteins that were removed from the lab testing, because of a trial to produce a vaccine.. and if these proteins were used, vaccinated persons would always test positive, even if no lyme were to be present. I don't know which ones they are though.
  7. 1 like
    Just wanted to say I'm following this thread! I'm in the US (east coast) and want to hear of any updates! Maybe someone will find a way to produce a dried product in small batches and ship? Wishful thinking.
  8. 1 like
    There are a few possibilities and others have mentioned some of them. Has he had a vaccine in the last few weeks or months? That triggers new or returning symptoms in some. Have you moved or changed schools? That could indicate something in the new environment, such as mold. Any recent dental work? That can be a trigger for some. I agree with HopeinHIM - if he hasn't been evaluated by an LLMD for Lyme, Bart, etc, this would be a good time. These infections deplete the immune system and can cause allergies, immune deficiency and autoimmunity.
  9. 1 like
    Hi everyone, I'm new to this forum, but I thought I would reach out since I've read a lot of helpful advice on these threads. My son (10 yo) started experiencing tics and depression after a bout with impetigo. He spiraled downward pretty quickly with suicidal thoughts, bad tics, separation anxiety, severe irritability, etc. We read about PANDAS because a friend's daughter had it and found that many symptoms were similar as it seemed like he changed overnight. We brought the idea to our pediatrician, but she quickly said it's not PANDAS because his ASO titer was normal. A friend suggested Advil which we have been giving him and it seems to be helping. We then found an amazing ND who was open to the idea of it being PANDAS, put him on Augmentin right away and did bloodwork. We are also waiting for Cunningham Panel. The bloodwork came back showing severe strep infections in the rectum and throat and a low Imuglobin A. Our ND thinks that he may indeed have PANDAS. We are on day 4 of the Augmentin and we can't really tell if it's helping yet. He has been having extreme rages that have gotten better since he's taken the Advil, but are still happening (mostly at night or when he's due for another dose). I'm wondering if anyone has advice for us as far as how to help with the rages. He goes absolutely crazy (and he was an extremely calm and peaceful kid before this all started - an "old soul") and it's like he's possessed. He wants to hurt himself and he hits himself in the head and he screams and writhes around on the floor. Very scary and heartbreaking to watch. Any advice on how to calm him down once he starts raging for those who have experienced something similar? It comes out of nowhere so hard to figure out how to avoid it. Thanks in advance for any advice!
  10. 1 like
    My son has been on Zithromax for over a year (500mg 3x a week) and his Dr. wants him to be on it until he has and adult immune system. We have discovered that when he goes off the antibiotics, he starts to relapse.
  11. 1 like
    Yes, we had severe OCD, then a couple of years of normalcy, and then an awful flare after some sickness.
  12. 1 like
    Check for bartonella! Lymes co-infection. Our son raged and OCD out of no where. If he is young it could be he is entering puberty and that can rock their world as well. For us it was three long years and the fear is always there. We cleaned up his diet and gave supplements based on organic urine test and 23 n me test. Best thing I ever did!! His ups and downs now are mild compared to before (no soy, dairy or gluten) He tells us his brain is calm now. We found that he was depleted of B1 and B2 as well by the test results. I thought big deal when I heard that but big change once we started to supplement. Our immunologist claims that these children have innate immune response to various triggers depending n their genetic predisposition. This causes inflammation and the mental symptoms are a response to that inflammation.
  13. 1 like
    Hi Joyle Thank you so much Joyle for your answer. I bought the plant but i don´t want to give it to my boy until i am sure. Yesterday i could see the first flower and it is like in the photos. It looks like Clerodendrum inerme. The only difference is that the leaves and the flower of the shrub are smaller than the ones I have seen in internet images; I do not know if this is because it is a young shrub. I planted it in my father-in-law's garden and created cuttings. I have eaten 5 leaves without any reaction; I attach images of "my clerodendrum". Please could you tell me if you think if it is Clerodendrum Inerme. Thank you very much.
  14. 1 like
    I don't pretend to understand it, but there seems to be a link between phosphatidylcholine and glutamate (where one inhibits some of the action of the other). A search of this forum for posts with both these items comes up empty, so I am presuming that phosphatidylcholine as another possible antidote to "glutamate storms" has not been explored in this forum, though both are well-commented on separately. I mention only because our PANS son had an improvement on a high dose (3000mg/day) of phosphatidylcholine over the last several months. We trialed on and off it several times, and I posted some discussion and our results at the end of an old thread here: http://latitudes.org/forums/topic/18965-phosphatidylcholine/#comment-186762 .
  15. 1 like
    You should absolutely address Lyme and coinfections before beginning IVIG, especially if you are paying out of pocket. You may, like so many others, find that your son needs 3 or more rounds of IVIG, and those still may not be effective if Lyme and coinfections are playing a role. Although IVIG will boost his immune system, it can't take the place of aggressive antibiotic/anti-malarial treatment.
  16. 1 like
  17. 1 like
    Hi nrr, Clerodendrum Inerme is a subtropical plant and so it will be difficult but not impossible to grow it in temperate or cooler regions. I also live in a cold region in Australia. My husband has built a small, insulated 2X2m room and added lights, heat and airflow. Our five 10 week old baby plants have 8 hours under the lights, 6 extra hours in daylight and ten hours in the dark. Our temperature has gone down to 4°C overnight in the garage so that's why the plants need help. They are growing slowly and we hope to see a growth spurt come the Spring! I have emailed a friend in Hawaii who managed to import two small plants from the U.S. two months ago. Unfortunately that nursery doesn't have any or another nursery in California which is also out of stock. I have asked her to inquire if they plan to get more in. Meanwhile keep looking for it because it is worth the trouble. regards, Joyle Here's a nursery in The Canary Islands that has it in stock and ships worldwide! http://www.canarius.com/en/plants/volkameria-inermis.html
  18. 1 like
    Hi Joyle, yes I am in Australia and I do...
  19. 1 like
    Hello Lyn, Yes, the plant is really working for my 22 year old grandson! He has extreme Tourette's syndrome with all the comorbids including OCD, ADHD, anxiety and Tourette's rage and unfortunately copralalia. They are all down by 90% so all greatly diminished. He is very comfortable in his own body now and his mind is clear and focussed. Please send me a private message if you want to. You can do that by clicking on my profile.
  20. 1 like
    I don't quite understand the in numbers and what they do but depending on what protein and anti stuff are the build up in the basil ganglia can cause different symptoms. DD's pandas doc. Said with the three d2, lyso & kam being out of range her tics and rage makes sense as does her reaction to ibuprofen, benadryl and pseud. Mitochondrial support supplements have greatly reduced her symptoms. The big one being out of control rage. From every day to once or twice in a month is a big improvement. No gluten and limited sugar.
  21. 1 like
    I was recently listening to some of the Autism One videos from last week's conference, and wanted to pass along the link for those interested. My DD has PANS/ADHD/Anxiety diagnoses. Although I don't have a autistic child, I feel a lot of the speakers at the yearly Austin One conference have important messages that can be applied to a variety of childhood disorders. You may want to listen to Dr. Rosario's Trifletti's video titled "Rosario Trifiletti - PANDAS/PANS as a framework for understanding vaccine reactions and autism" (the video is located under the Saturday list of seminar speakers). My daughter has been taking the BRAVO probiotic for two years, and it has been, by far, the best thing we've done for her to help build up her immune system. The inventor of the probiotic, Dr. Marco Ruggiero, is also a speaker at the Autism conference. I hope this helps anyone who is interested in doing some research! https://www.youtube.com/user/autismonemedia
  22. 1 like
    Hi Joyle and Juwairah, Thanks for your suggestions. My kid has some tics and I have easily procured a C.Inerme plant in India. I am skeptical to try it on him directly. So I might have on myself for a few days and then give it to him. He is 20 Kgs and 6 years so his dosage should be much less I guess. Did it have any side effects with you guys?
  23. 1 like
    To your pledge to "improve my quality of life by exploring all measures possible", and for the sake of those golden years: I consider it wildly "lucky" that you have a psychiatrist that wants to try antibiotic (abx) therapy. I say lucky only that it is one of those "measures possible". On the one hand, we have Dr. Trifiletti in New Jersey, who has suggested abx to a ticcing parent of a PANDAS child he was treating, and finding it resolved the tics in that middle-aged person. On the other hand, we have Dr. Miroslav Kovacevic who has said "ultimately, all abx eventually fail", as if to say, it works well when caught really early, but not so well after a long time untreated. If it were me, I would first trial a good probiotic for at least a week (to know it doesn't make it worse), and then I would go for the abx. You don't know for sure until you try.
  24. 1 like
    My kids have been kinda-sorta REID for a while. REID is more than just low glutamate but also targets meat consumption at 20% (I think) and lots of raw greens, vegetables etc...among other things. Its super expensive to do this. And like the posters above we found it super difficult to do, given all of other things they have given up, and it has a lot of social impacts on the kids. We have made progress reducing free glutamates (REID does NOT worry about glutamates in vegetables, they are bound) We try not to have processed meats, e.g. use fresh pork sides and salt them afterwards. They only drink raw milk. We try to do lots of greens but mainly in the summer out of the garden (cost.). No processed foods, which means we eat whole foods. Very little sugar. But I can say that we do see improvements. To us the big question is their seasonal PANDAS spikes. If we chart their symptoms they begin to increase in October and peak in December and then have another shorter spike in the March or April. We used to think it was allergies but wonder if its something else like diet. For example we used to let the kids do Halloween candy but noticed they would be awful afterwards.
  25. 1 like
    Hmmm...this really has me thinking today. Our son was gf/df for years before his PANS diagnosis. The diet changes definitely helped with his early PANS flares in toddlerhood (which we didn't know were PANS then). Reintroduction of gluten and dairy in the past caused a major regression which was improved again by changing his diet. With such past success with diet changes, we followed the recommendation of the first DAN we consulted after our son received his diagnosis, to remove all grains. But in removing the grains we've found we've actually increased his intake of processed meat and vegan "dairy" products such and cheese and yogurt - major glutamate offenders. I've really struggled with giving him so much processed meats but with his diet so restricted otherwise we've needed some convenience foods. I've really questioned whether the meats etc are making him worse and just before reading this was contemplating removing or limiting them. After reading this I stumbled online to information on the REID Glutamate free diet. I think I'm going to try it and see if it yeilds any positive results. May need to wait until school is out to jump in with both feet but I'll keep you posted on whether it has any positive impact.
  26. 1 like
    Mama4 -- If you've searched threads on the glutamate topic here, then you've probably seen plenty of my posts in that regard. We've never done Nutrahacker or any other gene testing to date with DS; we "lucked" and trialed-and-errored our way into effective treatment without it. My introduction to the glutamate connection with PANDAs and anxiety behaviors in particular came via research conducted by Dr. Rothstein with respect to glutamate modulation in anxiety disorders and the glutamate modulating properties of beta lactam antibiotics. I did some reading on a non-glutamate diet but honestly, given all the naturally occurring glutamates even in fruits and vegetables, it really did just appear to us, for our family and lifestyle at least, to be overly-restrictive. We do, however, eat preservative-free and largely gluten free (rice and quinoa pastas rather than wheat, next to no bread, etc.), and that has been a positive for all of us in terms of weight and general inflammatory issues. NAC has been a part of my entire family's supplement regimen for years now; DS takes the most given as he has the highest tendency toward anxiety, but DH and I also take it as it has also been studied for effectiveness in combatting flu and other respiratory illnesses. It has been good for all of us, but yes, there are some who don't respond well to it. Perhaps one or more of them will speak out and give you some information that will help you better determine NAC's suitability for your DS. I, personally, am convinced that glutamate immodulation is a significant player in my DS's situation, though I realize there are a number of more primary culprits for others. All the best to you as you work out the best path forward for your family. I'm sure you'll find it.
  27. 1 like
    My kids have hypogammaglobulinemia.Long-term abx and LD IVIG.
  28. 1 like
    Hi sahm, is the Charlotte's web oil hemp oil or CBD/cannabis oil do you know? reason I ask is that you can get Charlotte's web oil in Australia online. However, you cannot legally buy CBD oil legally in Australia yet, so I am wondering if it is hemp seed oil?
  29. 1 like
    In a way, it's relieving to know why they are always sick. But, now, to make the decision as to which IVIG route to take is making us crazy.
  30. 1 like
    Going to our immunologist in July (appt. pushed back 2 times, ugh!) to find this out. DS17 has had two HD only (1.75g and 2g); improvement for ~6 mos., after that doesn't last. IgG levels continue to drop, and flares continue. Hypogamm. dx but don't know why his numbers drop, yet. Glad to hear LD has helped for some; my fingers and toes are crossed for some relief here. About to do 2nd steroid burst.
  31. 1 like
    We don't know. We just stopped again for the summer. We will check levels in August to see if levels held. They held in the normal rangenlast summer, but had fallen within the normal range. My kids have hypogammaglobulinemia, possible CVID, not confirmed CVID.
  32. 1 like
    Vittorio, Sono una mamma Italiana che vive in America. Non ho ancora avuto una diagnosi ufficiale, ma la mia bambina di 6 anni sembra appartenere alle caratteristiche PANDAS (tic improvvisi + Infezione da streptococco). Non ho ancora abbastanza informazione da condividere (i sintomi sono cominciati recentemente), ma se hai bisogno di aiuto con supplementi, traduzioni, o qualsiasi altra informazione che non puoi reperire in Italia, sono a tua disposizione.
  33. 1 like
    Hello, My son has been suffering with PANS/PANDAS since age 8. He is now 14. He was diagnosed at age 11 by a PANDAS doctor after a few years of having standard mental health treatment without success. After two years of antibiotics he received IVIG and six week post-IVIG became significantly worse. Our doctor had never seen this before. We called Dr. K. in Chicago who said my son probably still had strep in his tonsils. We were unable to get a doctor to remove his tonsils based on the PANDAS diagnosis alone. One ENT gave him clindamycin which has a history of getting into tonsils better. His PANDAS doctor then ordered the Cunninham Panel which was negative. My son did not want to participate in their study. We were left with returning to conventional neurology for the tourette symptoms and psychiatry for the OCD. A new neurologist/psychiatrist (a conventional mainstream doctor) heard our story and thought we should try the IVIG again. We did a second round and my son improved greatly then after the third round he's like his old self (as much as I can remember him after all these years.) It feels like a miracle to me. Although he's not 100% better it's remarkable enough for everyone in his life to notice. I'm not sure what helped this time. Maybe the clindamycin before the IVIG? Do not give up based on a Cunningham Panel. It is still experimental. I was crying when the doctor told me it was negative and IVIG would not work for my son. I was certain it was PANDAS. They (Cunningham) are still looking for markers and the current panel does not cover all possible markers which is why they ask families to participate in the research to find new markers. If I had turned down the offer for more IVIG based on the other doctor's recommendation from the results of the Cunningham Panel my son would not be on his way back to wholeness today. His tics are almost completely gone after years of severe tics and anxiety is very low. Almost normal. Of course after years of being in the grips of PANDAS my son has much catching up to do with peers. We still have much healing to do. I'm not sure he will ever catch up but at least now he has a chance. Good luck to everyone. Eva
  34. 1 like
    Hi July, 40 mg seems like it could be a bit low for a burst for a 16 y/o. When I did my first steroid burst, it was 50 mg for five days, and I weighed 99 lbs. I’ve also done steroid tapers, and those usually started at 60 mg. Every one is different, though. That first time I did a five-day burst, I saw improvement on the third day. I’ve had other flares when it took a few days, and still others when I improved within a day on steroids. There have also been a few when the steroids didn’t help at all, but that was when I had infections that I didn’t know about. If there’s an active infection, it’s entirely possible that the steroids will either not work, or they’ll make him worse. Have you looked into Lyme disease through Igenex testing yet? It’s so important to treat Lyme if it’s there—otherwise, a lot of the PANS treatments won’t have their full effect. Does he still have his tonsils/adenoids? Infections can hide there, too, and antibiotics won’t reach them.
  35. 1 like
    HI Joyle, I've been following you trying to source this plant and am v happy that you've been able to get one. Im also in Australia and would love to get hold of this plant to see if it can help my son with his tics. how are you going with dosages etc. Is it still working?? Are you able to give me the details of the nursery where you bought this please? Thankyou Lyn
  36. 1 like
    Wasswa -- You can get the non-hallucinogenic component (cannabodoil or CBD) in a tincture form; it can be placed in drops under your tongue, or put into empty gel caps and consumed. Many families on some of the forums here (PANDAS/PANs primarily) have used it for addressing anxiety issues with their kids. The CBD oil can be purchased via Amazon and other on-line outlets, and given as it doesn't contain THC, is legal to purchase pretty much anywhere. Since you don't smoke and have not tried pot previously, this might be a good option to try and see if the CBD is helpful to you.
  37. 1 like
    Hi Castrum, Juwayriyah mentioned in an earlier post that the plant does not flower all the time. The name is Clerodendrum inerme and is also known as Volkameria inermis. Buy that plant very quickly! Common name: koinal, Glory Bower, Indian privet, Seaside clerodendrum, Wild Jasmine, Sorcerers Bush •Hindi: chhoti-ari, संकुप्पी sankuppi, sangan-kuppi, vilayati mehendi, batraj • Marathi: sangam, वनजाई vanajai, sirit-mari • Tamil: சங்கம் Sangam, Peechangu, அந்ஜலீ Anjali • Malayalam: nirnochi, shangam-kuppi • Telugu: erup-pichha, pisangi, pishinika, takkolapu-chettu • Kannada: naitakkilay, itteru, kundali gida, naayi tekkake, thakkalika • Bengali: বনজাঈ Banajai • Oriya: vଅନଜାଈ Vanajai • Urdu: گل دمدم Guldamdam • Sanskrit: कुंडली Kundali Botanical name: Clerodendrum inerme Family: Verbenaceae (Verbena family), Synonyms: Volkameria inermis
  38. 1 like
    We have seen Dr Rao since our onset back in late 2013. He is very knowledgeable on PANS/PANDAS and spends a great deal of time with patients. This being said, you often have to wait a long time to be seen in the patient room. However, as long as he is spending time with us and being thorough (which he does), I dont' have an issue. Just be prepared to wait or plan to get an early appt in the morning. The staff is helpful, especially Lori, and we have been pleased so far.
  39. 1 like
    Our DD had all the clinical symptoms of pandas/pans. Evey doctor she has seen concluded that her symptoms were pathological and not behavioural. She was diagnosed in her 4th month by her PCP as having an unknown autoimmune illness. We didn't care what the doctors called her illness as long as that could treat it/manage it. Along with the diagnosis comes insurance and/or social services funds. We moved from southern California to Washington state in 2013 almost 2 years after the onset with no pandas diagnosis. Dd's diagnosis of pandas came from her physiatrist at Seattle childrens he ordered the Cunningham panel as a confirmation of the diagnosis so he could refer us to a pandas specialist. The Cunningham panel to diagnose pandas/pans provides evidence for the more expensive ivig and plasmapheresis treatments which can be used in part to get insurance to pay the bill. The majority of the plethora of blood tests ordered by various doctors to find the causes of dd's symptoms, be it positive and negative got us nowhere toward being able to manage dd's symptoms. The history of tests does help rule out many co-ailments. A second panel would not do us much good, unless DD's symptoms changed. We know that dd needs mitochondrial support and her neurologist is ordering a mitochondrial panel so that we can adjust the supplements according. Without the Cunningham panel, we wouldn't be where we are today in managing and treating dd's symptoms. Her pandas specialist has helped us tremendously reducing the intensity of DD's symptoms.
  40. 1 like
    Hi Everyone. I just had to sign up to this forum to let you all know that Clerodendrum inerme has dramatically helped my sons tics .It is truly a miracle plant! We live in South Africa and I sent my husband to India in 2012 to source the plant which now grows as a bush in our yard. My sons tics began at age 3 (started with eye blinking, shoulder shrugging, got worse and worse...etc.) After years of research and tears,our prayers to Allah were answered when I came across the study on Clerodendrum Inerme for tics. My son is 10 years old now. And a 'normal' little boy in every way.We dehydrate the leaves, grind them fine and put the powder into capsules . We used to liquidize the leaves with water and strain, but he could not handle the bitterness. Right from the first dose there was a major improvement. In the beginning I would give him the juice twice a week, then once a week , then once a month. He can now tolerate all kinds of foods that were once forbidden. He will have 2-3 capsules every 2-3 months or so when I notice he is stressed about something or has gone overboard on junk food. A day later and he is fine again. I promised that if the plant worked I would share this amazing information and I pray for all the children and parents that you derive benefit from it.
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    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.
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    St. Louis, MO: Dr. Tracy Fritz at Little Flower Center for Integrative Medicine
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    DD13 is doing wonderfully! Three years ago I would not have believed that she could improve to the extent she has. She has lost all cognitive/executive impairments and her Tourette's is only suggestible (if I ask if she needs to tic she will have to - motor only, no vocals), and not otherwise visible. Going back to school has not resulted in any sort of relapse. We were at the cottage this weekend and without me asking she got out her homework (Grade 8) and reviewed (reworked) 30 math questions for a test that she has today. She packed the homework herself, got it up to the cottage and took full responsibility for studying. She worked for at least 3 hours. Neat and tidy writing, organized work area. At dinner time she admitted that she was having trouble with one question, but that she felt after dinner when she had had a break that she would figure it out - and she did. No screaming or crying. No throwing things or raging. Absolutely no frustration; just confidence. It was truly amazing! This was a child that 3 years ago (Grade 5) I had to physically dress, brush teeth, tie shoes, pack backpack, pick up homework from school and work through unfinished school work/homework one on one because of ADD. She had an IEP and the help of the classroom EA. She sat behind a screen and wore ear plugs to decrease distraction. She was removed from the classroom for testing and had an EA sit with her to redirect her attention. She had an EA or another student go to the bathroom with her because she would become distracted and forget to go back to class. She had to eat lunch in the special needs classroom so the teacher there could redirect her to eating; otherwise her lunch would return uneaten. Her printing was huge and messy and her books covered with doodled pictures (the same one over and over - her OCD). She raged, she screamed, she hit, she was socially withdrawn and regressed. She was so fatigued, dizzy and in so much pain that she had to sit out of gym class, or sit on the curb watching the neighbourhood children play. She had Tourette's so badly at times that she couldn't read because of head snapping/bobbing/eye rolling, and often couldn't give presentations in class because her vocals were so bad. A couple of times her Grade 6 teacher would recount this to me and cry, she felt so sorry for our daughter. Her improvement has been nothing short of a miracle. We are maintaining low doses of Buhner's bartonella protocol (minus l-arginine), I am still messing about with the babesia herbs. Both DD and I are reacting very strongly to bidens (1 drop 3x daily) (which Buhner says is not supposed to be as potent as cryptolepis), with brain herxes (dizziness, brain fog), but with the help of Julie McIntyre we are still seeing improvement. One thing that I found to be a surprise was Julie's recommendation of cilantro/zeolite for detox. I put off using cilantro for about 8 months. One because I thought it was baloney (you'd think I'd know better by now), and two because I couldn't find an organic source. Well I found an organic tincture source, and as soon as I started using it (1 drop 3x daily) our daughter's remaining symptoms declined noticeably (that is, even my husband noticed). I messed about and ended up being too enthusiastic (10 drops 3x daily) which resulted in a yeast infection (googling revealed that the gut may overgrow yeast to protect the body from too many metals being dumped into the intestine at once). Instead of using zeolite we are using Diatomaceous Earth; we may switch to zeolite (which Julie swears by, and she hasn't led us astray yet - except for dosages which are very tricky for us (we find 1/4 of recommended dosage to be best). The amazing thing is that during a recent trip which entailed a week's stay in a "free wireless" hotel (meaning wireless is EVERYWHERE) both our daughter and I were unaffected by the EMF's. We are usually quite electrosensitive. Previous trips to wireless available buildings (museums, hotels, restaurants, malls etc.) generally resulted in an increase in symptoms for our daughter (especially ticcing, fatigue and headache to the point of having to sit down and rest) and palpitations/anxiety for me. I was not looking forward to staying in the hotel, and neither was our daughter, but after our first night there we realized that we weren't being impacted to the extent that we had been. We actually slept like logs! Cilantro and clays are used in many natural metal detox remedies; and it would make sense that removing metal burden from the body would decrease reaction to electromagnetic frequencies. No child should have to suffer the pain, fatigue and cognitive dysfunction that DD has had to endure, but I have learned so much from this journey: That mainstream medicine may not be the be-all, end-all. That bacteria are not the only problem, that compromised immune/detoxification systems are responsible for symptoms as well. That our children are being poisoned by the pesticides in their food (big agriculture) and by the metals/adjuvants in the 70 (!) vaccines now recommended by experts (mainstream medicine / big pharmaceutical companies). No large corporations/conglomerations are ever again going to tell me what is best for me or my family. Although in the past I would have considered myself nuts to even suggest this to anyone else (let alone believe it myself), I now read several alternative health sites: http://www.thehealthyhomeeconomist.com/ http://www.mercola.com/ http://www.greenmedinfo.com/gmi-blogs http://www.chrisbeatcancer.com/ http://www.i-sis.org.uk/index.php http://www.ageofautism.com/ http://www.momsacrossamerica.com/blog
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    JPDad, Coincidentally this post just came up on Dr. T's FB concerning what appears to be an adult with coxsackie. It seems to indicate antivirals could be helpful: "Got the best news EVER tonight!!! I was contacted by Dr. T. My labs show Mycoplasma consistent or chronic infection. Pneumococcal titers are high although I have never had the pneumonia vaccine??, There is persistent evidence of Coxasackie A titers which is rare in adults. This is a known trigger of PANS. Dr. T has a reasonable suspicion that...there was an active or chronic mycoplasma and/or coxsackie infection that was activated by the live nasal influenza vaccine. It can be treated with antivirals and antibiotics which I will start tomorrow. I am so appreciative to Dr. T for his expertise and persistence. All these tests could have been done while at Upstate University Hospital by my team of neurologists and movement specialist through Upstate University. Their response is " I don't really buy into PANS". Their recommendations are for me to establishe care with a psychiatrist/psychologist as they may possibly by a psyhogenic disorder. ARE YOU KIDDING ME!!!! Maybe if Suny upstate did the appropriate testing they would have known the cause of my symptoms. Thank you Dr. T for thinking outside the box, giving me hope, and reassuring myself that I am not crazy!!! The movement disorder specialist and I had a heated debate about PANS and he said... " If this Dr. T can cure you I want you to walk into my office and tell me I am wrong" I indeed will do this. When the medical profession does not have answers for your ailments they are too quick to say a psychogenic etiology may be the cause!!! Thank you for all your prayers!!" Ko's Mom
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    I absolutely KNOW that my pandas 12dd has very dilated pupils during anxiety or OCD. Without a doubt. I think it is a very common phenomenon with any type of anxiety.
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    Yes, we had been using many alternative things as it was clear something was not right with my son. He was already seeing a naturopath and homeopath, but we had not yet formulated any fixed plan as were mainly doing various testing. He was on some homeopathic drops and pillules. His exacerbation happened just bf Christmas 1999, shortly after his 10th b'day. We were very against getting medications when the TS/OCD dx came in early 2000, as we have always been holistic in our health perspective, but sadly, when things were eventually so very severe for my son after more exacerbations, the combo of the school, the neurologist, psychologist and psychiatrist scared and bullied me and dh, and persuaded my then 11yo that it was the only way he could have any quality of life so the year of the medication nightmare began.....ugh, I still struggle to think back on that year I thankfully found a copy of Latitudes magazine at a friend's house in late 2001, when my son was in severe withdrawal from the meds, even tho under physician care. I learned from there about Bonnie's plan for her child (long before she had Bontech supps) and I found her then yahoo page with her supplement list. Took it to our naturopath and the rest is history...things kept getting better even tho we still have had the ups and downs that living with neuro and autoimmune illness brings. The Crohn's threw us a curveball (symptoms began in 2004 but correct dx only in 2006) Son has always had digestive probs tho, since infanthood, and one of his early dx from the naturopath was "leaky gut syndrome" and candida overgrowth, along with Epstein Barr virus. quote in my signature says it all: "When Life brings you to your knees...you're in a good position to pray!" honestly, God alone knows the mess I really was inside. I was totally terrified and felt hopeless for my son's future. Only one thing got me through that time. Prayer. I know I found that Latitudes magazine as an answer to prayer that day. I had been begging God to show me the way to help my son.....and I was finding it in those pages.......I eventually joined the forum to share the success we were seeing as a way to "pay it forward", and that is why I am still here
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    Dear parents, Below please find a summary of my current thinking on the subject of PANDAS and related illness. This is an outline of a paper I hope to submit for publication soon which summarizes our understanding at of the dawn of the '10 decade This is somewhat dense. Any comments appreciated (especially any from Buster!) Post-infectious Neuropsychopathy of Childhood Basic problem: Selective immunopathy to streptococcus (or less commonly other infectious agents) that incite an dysimmune process leading to a functional catecholaminergic neurotransmitter imbalance in basal ganglia circuits and perhaps other part of the brain, Resulting in some combination tics, OCD and affective symptoms Classic (Swedo) presentation: 1. Age 3-11 2. Acute onset OCD and/or Tics, often remitting/recurring 3. Temporally associated with infection (if GABHS = PANDAS) Variants (see my Pavone 2006 paper): 1. < 3yrs old at onset 2. > 11 yrs old at onset 3. Subacute or chronic temporal features 4. Atypical symptoms 5. Severe symptoms a. Exorcist syndrome 6. PANDAS in children with other conditions a. PDD-PANDAS Immune subgroups: Type 1 PANDAS – Overactive immune system 1. Markedly elevated ASLO, Anti-DNAase B and/or streptozyme 2. Intermittent culture positive for GABHS 3. (?) Immunocompetent on pneumococcal serotype testing 4. Anti-CaM2K positive in PANDAS range – possibly higher end 5. Immunoglobulin levels fall with effective strep treatment (?) 6. ASLO, Anti-DNAase B and streptozyme fall with effective strep treatment Type 2 PANDAS – Underactive immune system 1. Non- or minimally elevated ASLO, Anti-DNAase B and/or streptozyme. May show serial changes (though feeble) with streptococcal infection 2. Can be culture positive for strep, don’t develop expected titer rise afterward 3. (?) Immunodeficient on pneumococcal serotype testing 4. Anti-CaM2K positive in PANDAS range – possibly lower end 5. Immunoglobulin levels don’t change much with effective treatment 6. ASLO, Anti-DNAase B and streptozyme fall with effective strep treatment Type 1 PANDAS is easier for the medical community to digest since there is evidence of streptococcal infection, similar to Sydenham Chorea, etc. Type 2 PANDAS is harder for the medical community to understand since there is little evidence of streptococcal infection, similar to Sydenham Chorea, etc. Non-PANDAS 1. Not GABHS (i.e. non-GABHS PANDAS) GABHS=group A beta-hemolytic streptococcus A. Alpha-hemolytic B. Non- group A Beta-hemolytic C. Gamma-hemolytic 2. Not strep at all (i.e. non-PANDAS PITANDS) A. Lyme and related illnesses 1. Borrelia 2. Babesia 3. Erlichia 4. Other tick-bornes B. Viruses a. EBV b. Others 3. Idiopathic antibiotic-responsive neuropsychiatric disorder (no cause identified but amazingly good response to antibiotics) 4. Not infectious at all A. Medication-related a. Tics with stimulant medication use b. Others B. Metabolic disease a. Wilson’s disease b. Others C. Other known causes (very rare) a. Structural brain lesions 5. Idiopathic According to medical thinking circa 1985, this is the ONLY group. For PANDAS non-believers, this is STILL the only group INITIAL WORKUP Basic workup in everybody with clinically suggestive picture should be: Initial screen: 1. ASLO, Anti-DNAase B, streptozyme (GABHS marker enzymes = GABHS-ME) 2. Lyme titers (especially if from endemic region, suggestive symptoms, others infected) If GABHS-ME panel positive, then diagnosis of probable Type 1 PANDAS made. This diagnosis is strengthened by longitudinal temporal correlation of clinical symptoms with repeated infection. If 3 or more such episodes (rarely fully documented) – definite Type 1 PANDAS If GABHS-ME panel negative, then diagnosis is likely Type 2 PANDAS or non-PANDAS To further workup in these patients: 1. Repeat GABHS-ME when convalescent ( to compare acute vs. convalescent titers) 2. Throat culture – helpful if positive; supports Type 2 PANDAS. Not helpful if negative. 3. If Prevnar has been received, anti-pneumococcal panel (14 serotypes). If panel abnormal, supports Type 2 PANDAS. Probably not helpful if Prevnar not received. If Prevnar received and normal, probably non-PANDAS. 4. Further investigation of immune status if anti-Prevnar deficient.   FURTHER PATIENT CLASSIFICATION At this point, one should be able to classify patient with a working diagnosis: A. PANDAS TYPE 1 B. PANDAS TYPE 2 C. NON-PANDAS Treatment of all but most severe Type 1 or all Type 2 PANDAS , ANTIBIOTIC TREATMENT PHASE can begin at this point. For NON-PANDAS patients, further “trigger search” should be attempted, but not too exhaustively, in most cases. In SEVERE (i.e. Exorcist-syndrome) Type 1 PANDAS, consider proceeding directly to STRONG IMMUNOSUPPRESSION PROTOCOL. This will almost always be done in the hospital setting. In Type 2 PANDAS patients, a PANDAS IMMUNOPATHY WORKUP should be done before considering STRONG IMMUNOSUPPRESSION PROTOCOL All NON-PANDAS patients should be further investigated with the NON-PANDAS WORKUP . While this workup is in progress, and if there are no contraindications, treatment with ANTIBIOTIC PHASE should be considered. If patient initially felt to have NON-PANDAS does in fact respond very well to antibiotics, patient should be labeled IDIOPATHIC ANTIBIOTIC-RESPONSIVE NEUROPSYCHIATRIC DISORDER. So we now have 5 categories: A. PANDAS TYPE 1 (HYPERIMMUNE TYPE) B. PANDAS TYPE 2 (IMMUNODEFICIENT TYPE) C. NEUROPSYCHIATRIC DISORDER WITH NON-STREPTOCOCCAL TRIGGER D. IDIOPATHIC ANTIBIOTIC-RESPONSIVE NEUROPSYCHIATRIC DISORDER E. IDIOPATHIC ANTIBIOTIC-RESISTANT NEUROPSYCHIATRIC DISORDER (AKA PLAIN OLD OCD AND/OR TICS)   BASICS OF TREATMENT - DIFFERENT, DEPENDING ON GROUP PANDAS TYPE 1 (HYPER-IMMUNE) Not very severe: 1. ACUTE ANTIBIOTIC PHASE (consider adjunctive steroids or Advil) 2. ANTIBIOTIC PROPHYLAXIS 3. Consider tonsillectomy 4. Adjunctive psychotherapy ( if indicated) 5. Consider adjunctive psychotropics 6. IF NECESSARY, IMMUNOSUPPRESSION Steroid burst IVIG PLASMA EXCHANGE Severe: 1. Antibiotics and psychotropics can be tried, but are usually ineffective at this stage, so consider proceeding quickly A. IV CORTICOSTEROIDS B. IVIG C. PLASMA EXCHANGE Strep STILL HAS TO BE AGGRESSSIVELY ELIMINATED once immune cool-down completed PANDAS TYPE 2 (IMMUNODEFICIENT) 1. ACUTE ANTIBIOTIC PHASE (consider adjunctive Advil) 2. ANTIBIOTIC PROPHYLAXIS (with good probiotic regimen) 3. Consider tonsillectomy 4. Adjunctive psychotherapy (if indicated) 5. Consider adjunctive psychotropics 6. ATTEMPT TO BOOST IMMUNE SYSTEM – a. CONSIDER IVIG CAUTIOUSLY. b. KEFIR c. AVOID CORTICOSTEROIDS, PEX d. IF EVER AVAILABLE, STREP HYPER-IMMUNE GLOBULIN ideal here – A GOOD SOURCE WOULD BE PANDAS TYPE 1 KIDS! IDIOPATHIC ANTIBIOTIC-RESPONSIVE NEUROPSYCHIATRIC SYNDROME 1. ACUTE ANTIBIOTIC PHASE (consider adjunctive Advil) 2. ANTIBIOTIC PROPHYLAXIS (with good probiotic regimen) 3. Consider tonsillectomy 4. Adjunctive psychotherapy (if indicated) 5. Consider adjunctive psychotropics NON-PANDAS 1. WAIT AND WATCH – RE-EVAL IN 6-12 MOS 2. Adjunctive psychotherapy (if indicated) 3. Consider adjunctive psychotropics SPECIAL SITUATIONS 1. SYDENHAM CHOREA CONCERNS a. CaM2 kinase essential (needed to distinguish SC vs. PANDAS groups) b. PEDIATRIC CARDIOLOGY EVALUATION 2. UNUSUALLY STRONG FAMILY HISTORY a. CONSIDER CGH MICROARRAY Hopefully this framework can guide workup and treatment protocols. I think the Cunningham and ant-pneumococcal tests may be the most specific we have, and the most helpful. Obviously, there is a lot to verify here. Happy new year to all with a wish of hope and recovery in 2010, Dr. Rosario Trifiletti ( Dr. T)
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    Wow- you are an angel Dr T, and a true doctor! Trying to figure out what subtype dd would be... If a child is very responsive to steroids, then I guess pandas type 1 would be it? Must make appt
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    Wow...ThANKS! I had contacted you a week or so ago regarding my two sons about PANDAS. I am going to call to schedule an appointment soon. That is the fully the best write up I have seen by far. It is SO aparant to me all these kids DO NOT have the same issues, cause, deficiencies, etc. So nice to see the different types....it makes so much sense. I feel that is why these kids present differently, different immune systems and responses...hence...different reactions to therapies. It is NOT a catch all for these kids. Thank you for realizing and posting on that!!!! You have no idea how much this is appreciated by all. Like I said when I spoke to you......you are going to become A VERY busy man. Thankfully so! Kelly
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    Our son is a couple months from 11 now. He started the famous eye blinking at 8 and did the body jerks (arms, legs and some head) a couple months later. They waxed and waned for about 4 months then stopped. He still has some facial tics, mostly some eye blinking, then nose twitching and eye brow furrowing but the jerks never came back. Even now his tics are so minor no one but me seems to notice. He goes for months with nothing, the last week he has had some eye brow furrowing, but he has been playing games on his Game Boy and this seems to be a problem. This has been a long journey for (mostly me) us. Since this started, we have now have him gluten free, clean foods, Kids Calm and Bonnies TS Control vitamins. This program seems to work and he is about %95 tic free. Even when he does get a tic, it is only one and they typically last for a week to 10 days then stop. They will start back if he has anything with wheat or food with either artificial stuff and or chocolate. I have found Natural Remedies Tic Tamer to really settle the tics down a lot when he does get them. I believe he is growing out of the tics, he seems to have the less often and less severe the his original ones. I absolutely hate these tics, and even today with his eye furrowing, made me feel very depressed and mad. I have come to realize this is my problem. He gets upset if he sees me upset about his tics, but I don't think they bother him that much. He would rather play his games and eat candy (sometimes) and knows they will give him tics. I want him to be a kid, so I don't want him to have bad memories of these precious years. I am so glad he is getting a little older so he knows what will give him tics now. A little background: No family history of tics or TS He is very bright, no other commorbid issues. Never had any vocal tics yet They bug me way more then him His tics have made me love him more then I ever thought I was capable of, and I pray that one day he is over them. Until then, I have learned to take one day at a time. I use to have those butterflies in my stomach just waiting for him to get off the school bus hoping they would be hardly noticeable. I travel a lot and still ask my wife every night "how are his tics?" Not sure why I decided to write this, just felt compelled and hoped I could offer some help. I feel like I went through the darkest days of my life since my father passed away 11 years ago and will leave you with this: He will get better and so will you. Lenny