Jump to content
ACN Latitudes Forums

jan251

Members
  • Content Count

    250
  • Joined

  • Days Won

    22

Reputation Activity

  1. Thanks
    jan251 got a reaction from eacampbell67 in PANDAS - Hearing Sensitivity Treatments   
    Zith and mino are known to be ototoxic (can increase hearing sensitivity issues).  Have they helped the other pans symptoms?  Maybe try an increase in NAC?
    A separate issue, but D3 makes my panda worse, so we don't use that.
  2. Thanks
    jan251 got a reaction from bobh in Most Effectives Treatments for PANS/PANDAS   
    Daptomycin, mentioned in that second link, is an IV abx.  Dapsone is the oral version.  My understanding is that Horowitz has been treating lyme patients with oral Dapsone for a couple of years, in combination with high dose folic acid (the study says folic acid was used for the purpose of mitigating the small risk of potentially very dangerous side effects of Dapsone, but on his FB page he says it was, indeed, methylfolate, i.e. natural folate rather than synthetic folic acid).  He has a paper on it.  https://www.omicsonline.org/open-access/the-use-of-dapsone-as-a-novel-persister-drug-in-the-treatment-of-chroniclyme-diseasepost-treatment-lyme-disease-syndrome-2155-9554-1000345.php?aid=7159
    From the anecdotes I've read, like anything else, it helps some and not others.  Personally, I'm very interested in the anti-inflammatory and immune modulatory effects of Dapsone in addition to its antibiotic qualities.

    For a lyme angle, there is an interesting discussion here http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/136190
  3. Like
    jan251 got a reaction from bobh in T&A viable before sinus surgery?!   
    The question of whether to do the T&A in the presence of a sinus infection is a question for the ENT performing the T&A.
    The more important question is whether you can do both the T&A and sinus surgeries together, as that would be preferred, as I understand it.  
    My kiddo had a T&A last spring and is now scheduled for sinus surgery with a new ENT.  The new doc is surprised and annoyed that the old ENT did not scan the sinuses before doing the T&A, because it should have been done in one surgery .  New doc felt he could tell just by looking at him that he was stuffed.  However, he is not infected, just has abnormal tissue in the nose blocking drainage (fix deviated septum, turbinoidectomy, ethmoidectomy).  I was surprised that he was surprised that this wasn't handled earlier.
  4. Like
    jan251 got a reaction from Cind in Tonsils and Pandas-not about hidden infections?   
    Interesting.  If the Th17 is coming from lymphatic tissue, I suppose it's possible, except that the tonsils are not the only lymphatic tissue in the area and the tonsils aren't the only location for strep infections.  There is lymphatic tissue in the sinuses as well as many other areas of the body.  This might explain why T&A seems helpful for some cases of PANDAS but nowhere near all.  Last I remember, the limited data indicated that T&A helps about half.
    T&A did not help my kiddo, though I do not regret it.  I'm glad we eliminated the possibility.  He recently had a sinus CT and we have an appt with ENT soon to discuss the results.  Plus, it would be unsurprising to me if my kiddo had strep in the gut, where there is lymphatic tissue, though I don't quite understand how it can really hide there from antibiotics, unlike in the tonsils.  Also, our doc frequently mentions that strep can be in the urinary system (bladder) as well.
  5. Like
    jan251 got a reaction from tj21 in IVIG for untreated PANDAS   
    Skin picking, trichotillomania, is indeed a common type of compulsion/OCD.  Even if it's a tic, tics are likewise symptoms of PANS/PANDAS.
  6. Like
    jan251 got a reaction from OCDandPANDASmama in IVIG for untreated PANDAS   
    Antibiotic for the sinus rinse - our ENT chose cleocin gel 1%.  It comes in a tube.  I suppose the gel is a better choice than trying to do it with a capsule.  Cleocin is clindamycin, good for strep. (My kiddo has high strep titers, though I suppose there could be something else in his sinuses like mycoplamsa, in which case clindamycin wouldn't do much, I think.)
  7. Like
    jan251 got a reaction from OCDandPANDASmama in IVIG for untreated PANDAS   
    Skin picking, trichotillomania, is indeed a common type of compulsion/OCD.  Even if it's a tic, tics are likewise symptoms of PANS/PANDAS.
  8. Like
    jan251 got a reaction from OCDandPANDASmama in IVIG for untreated PANDAS   
    With a history of sinus issues, I will second the recommendation to get that looked at.  After three yrs of antibiotics and several months of IVIg (and then a T&A), strep titers still high, we finally got around to a sinus CT.  The report did not indicate infection really, but the doc showed me on the CT itself where it looked like there may be infection.  We will now be attempting to treat that - not sure what the path will look like except that we are starting off with antibiotic in sinus rinse.  I'm hopeful this could be the key we have been missing for so long, infection that oral antibiotics couldn't reach.  Or it might be another dead end, but I'll chose hope instead.

    We found IVIg to be helpful for other symptoms (attention and so forth), just not the OCD.  I don't regret the IVIg and I can imagine a situation where we may do more once we are confident we have dealt with the sinuses.  I wish we had done the CT earlier as I'm having a "well duh" moment, but it really was not obvious.  Mild post-nasal drip is his only symptom.

    Possible infection in the sinuses fits well with the theory that problematic antibodies cross over into the brain via the olfactory bulb.
  9. Like
    jan251 reacted to MomWithOCDSon in IVIG for untreated PANDAS   
    Hi, and welcome!
    My DS has a similar story to your DD's . . . OCD at age 6, started CBT and some ERP and it backed off for a while, OCD returned with a vengeance at age 8 and this time added low-dose SSRI to therapy which worked for several years, and then at age 12 became so dysfunctional no SSRI worked, wouldn't participate in therapy, etc.  That's when we were finally able to get a PANDAs diagnosis and treatment (antibiotics).  In our case, because his initial response to antibiotics was so positive, we were able to convince our doctor to continue to renew them, and in the end, he was on them for nearly 2 years, with improvements all along the way.
    We saw Dr. K. for a consultation and he recommended IVIG for us, also; Dr. K. believes that IVIG is the only true way to "reset" the immune system and stop the autoimmune onslaught behind the anxiety/OCD, and the NIMH (Dr. Swedo) has agreed with him.  As you've probably seen here, there are those here who've had positive results with IVIG, and some who've not had palpable or lasting impacts, and I don't think anyone fully understands why the differences.  In our case, our DS was responding so well to abx, we decided we'd hold off on IVIG until and unless his improvements ceased or we couldn't get them abx anymore.  Not only did the IVIG seem like a more dramatic step, our DS didn't have any immune deficiencies, so we knew our insurance would not cover the treatment.
    A couple of things you noted I wanted to respond to, specifically:  1) as your DD has had breathing/sinus issues, have you ever had her sinus' "scoped"?  There are a couple of families here on the forum who's sinus testing disclosed some cysts in the sinuses that were basically pockets of infection, more or less hanging out there and driving an unrelenting immune response which also reached the brain.  Upon having the cysts removed, followed by a round of antibiotics, the child's behavior improved dramatically.  We never went to the scoping for our DS, but he, too, had had sinus and breathing issues since he was 2 or 3.  We think maybe the long course of abx was necessary in his case because of some infection hanging out in those sinuses that took a while to eliminate non-surgically, as his breathing and sinus issues improved along with his behavior symptoms, and he's not had any significant issues since PANDAs treatment.
    2)  You mention seeking Lyme testing.  I would encourage you to address that before you decide upon IVIG as there have been some reports here by families that IVIG was ineffective or even problematic for them because their child had underlying Lyme and/or co-infections that they didn't know about before moving forward with IVIG.
    3)  While I do believe that you need to find appropriate medical treatment and perhaps SSRIs will not ever be a successful piece of your DD's health, my DS has continued to benefit from a low-dose SSRI for some occasional, lingering anxiety periods, and there have been other kids here for whom low-dose SSRI's have been helpful in conjunction with other tools.  You might consider some genetic testing such as Genomind which focuses on genetic makeup and which psychiatric medications are likely to be effective or not based on one's genetics.
    And 3), you have a concern about "irreversible brain damage."  As the parent of a kid who, like yours, went for many years unsuccessfully treated for an autoimmune response (strep was our culprit), I will tell you that I don't see any brain "damage," per se, but I do believe that my DS's "wiring" today was informed by his experiences all those years.  He is now a healthy and happy 20-year-old, a scholarship student living away at college and growing mentally and emotionally on a daily basis.  But he is still prone to some anxiety during stressful times, and his go-to response to that anxiety are some OCD behaviors.  At this time, the anxiety and OCD are under control and so minor/sub-clinical that if you didn't know him extremely well, you'd have no idea.  So, "damage"?  I don't think so.  But a part of who he is?  Maybe.  Perhaps he'll continue to mature and evolve past even these remaining behaviors as his mind and body health stay with him.  Or he might always have these "tendencies" which, in addition to making him anxious at times, also make him conscientious, sensitive and empathetic toward others and their eccentricities.
    Hang in there, and all the best!  All is NOT lost!
  10. Like
    jan251 got a reaction from saidie10 in DS having relapse 6 years after healing from tonsillectomy, 2 IVIGs, 1 year on abx...what's happening?!?!   
    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.
  11. Like
    jan251 got a reaction from Gpookie in DS having relapse 6 years after healing from tonsillectomy, 2 IVIGs, 1 year on abx...what's happening?!?!   
    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.
  12. Like
  13. Like
    jan251 got a reaction from tj21 in NEW PANS TREATMENT GUIDELINES   
    Table and Text Excerpt from: “Treatment of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)” SE Swedo (NIMH), J Frankovich (Stanford), TK Murphy (Univ S Florida)
    In press, Journal of Child & Adolescent Psychopharmacology  https://www.pandasppn.org/wp-content/uploads/2017/05/PANS-Clinical-Care-Standards-for-Use-of-IVIG.pdf
  14. Like
    jan251 got a reaction from MomWithOCDSon in NEW PANS TREATMENT GUIDELINES   
    Table and Text Excerpt from: “Treatment of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)” SE Swedo (NIMH), J Frankovich (Stanford), TK Murphy (Univ S Florida)
    In press, Journal of Child & Adolescent Psychopharmacology  https://www.pandasppn.org/wp-content/uploads/2017/05/PANS-Clinical-Care-Standards-for-Use-of-IVIG.pdf
  15. Like
    jan251 got a reaction from philamom in Stanford news article: Antibiotics have a role in PANS even with no infection   
    http://www.mdedge.com/clinicalpsychiatrynews/article/131114/pediatrics/antibiotics-have-role-pans-even-no-infection
  16. Like
    jan251 got a reaction from MomWithOCDSon in Stanford news article: Antibiotics have a role in PANS even with no infection   
    http://www.mdedge.com/clinicalpsychiatrynews/article/131114/pediatrics/antibiotics-have-role-pans-even-no-infection
  17. Like
    jan251 reacted to MomWithOCDSon in Treating OCD with Minocyline   
    Bobh --
     
    I think your point about abx and the specific nature of the patients in the study is a good one. That said, IMHO, inflammatory and/or immune dysfunction-based mental "illness" is far more prevalent than most of the western medical community -- and/or the general public -- would even dare to believe at this point, so your study group would most likely always be subject to some variability in that regard. I don't know that ruling out or dividing study groups between those identified as PANDAS/PANs and those specifically identified as non-PANDAS/PANs would be possible or, if possible, actually define anything in the end. Quite likely, there are many, many folks out there who DO, in fact, suffer from inflammatory and/or immune dysfunction as root causes (or at the very least, "enhancers") of their mental disorders but have never been diagnosed and/or have never investigated the possibility.
     
    I don't know about minocycline specifically, beyond the studies and articles posted here, but I know that when my DS was on abx and seemed to need them for an extended time period in order for his behavioral gains to hold, I found a lot of research about the other qualities/properties of certain classes of abx, including their anti-inflammatory properties, their glutamate-modulating properties, etc. There have been studies associating positive impacts of various abx (d-cycloserine, augmentin, etc.) for schizophrenia, OCD, autism, bipolar, depression and PTSD.
     
    Seems to me that our full understanding of these "accidental benefits" is in its infancy, and there's a lot more to research and uncover in this regard.
     
    I'm sorry the mino did not appear to benefit your situation, but hopefully you'll find a course of treatment that is beneficial, if you haven't already.
  18. Like
    jan251 reacted to mmw in Strep A not going away on 3 abx   
    I started with just 5-6 drops three times a day and increased. It dissolves a gelcap very quickly but I fill a 000 size (big one) up three times a day (about 75 drops) and give it to her quickly before the capsule dissolves. She is doing so much better and finally healing.
     
    I gave the echinacea every hour for two weeks as best I could. Now I give one dropper mixed with water 3 times per day.
     
    She is 13 and 85 pounds.
     
    The dose I am giving is on the high end but she had strep that no antibiotics could eradicate for 6-7 months. We are also doing HD IVIG for immune deficiency.
  19. Like
    jan251 reacted to mmw in Strep A not going away on 3 abx   
    My daughter continued to get strep (or it never went away) on Augmentin, Zithromax, and Rifampin together.
     
    We found an herb that knocked it out. Google Stephen Buhner (He is mostly a lyme doc) and strep. I followed his recommendations and my daughter is finally strep free. i am keeping her on the cryptolepis indefinitely.
  20. Like
    jan251 reacted to Gpookie in Restore   
    I have it here. Tried it on myself. Almost no taste, but slight taste of topsoil in water. Did nothing. It seemed like hype/great marketing. I used it as I tested as having no gut flora a year ago and started using it with my VSL3. Restore did nothing for 5 months...
  21. Like
    jan251 got a reaction from wisdom_seeker in Anyone going to the PANDAS conference this weekend in DC?   
    I didn't go to the conference, but will throw in my two cents. From what I have read, 4 days is an older, relatively standard way of infusing high-dose (2 g/kg) IVIg in other, non-PANDAS conditions. I might guess that it is easier for side effects than a two-day infusion. If you saw good results, I'm not sure that the 4-day protocol would be related to the return of symptoms with subsequent infection.
     
    FWIW, it seems to me from reading forums like this one that one-and-done IVIg for PANDAs is the exception rather than the rule. One-and-done is probably wishful thinking on the part of certain docs.
  22. Like
    jan251 got a reaction from Eliself in Update, getting worse   
    I'm not sure, but maybe try this group https://www.facebook.com/groups/129017327268769/
  23. Like
    jan251 got a reaction from philamom in Update, getting worse   
    I'm so sorry. I have a 15 year old dd too. Your parents are only trying their best, as we all are, through this complex maze. It's very hard to know the correct path forward. Try to keep the big picture in mind, inflammation causing neuropsychiatric symptoms.
     
    If it were me, I suppose I'd ask them to take you back to the NP if possible. If the lyme was diagnosed by a blood test, that complicates the picture and I'd try to find a lyme-literate doc (LLMD).
     
    There are a lot of angles for treating without pharmaceuticals, if non-pharmaceutical supplements would be more attractive to your parents. For example, they might consider NAC and inositol, which have some research for OCD, though like many other treatments, it can take weeks to see results after ramping up to dose. Also, curcumin - I recall when I first started researching PANDAS, there were some online anecdotes about some fortunate kids improving from curcumin alone, probably in part due to the anti-inflammatory effect. There are herbal protocols for lyme. Often people with PANDAS have vitamin deficiencies or imbalances due to genetic defects in methylation and very particular vitamins can help. Unfortunately, there are no simple suggestions and no PANDAS treatment is one-size-fits-all. There might be a number of pieces to the puzzle.
     
    My only real suggestion is to keep the lines of communication open with your parents. Let them know about symptoms you are feeling, timing, severity, etc. Something I often say to my son with PANDAS is that I cannot read his mind - he needs to talk to me.
  24. Like
    jan251 reacted to mama2alex in In crisis -- so afraid of hospitalizaton   
    If I'm reading this correctly, he started on minocycline about a week ago and his symptoms started getting much worse about a week ago. So could it be a bad herx or he just isn't tolerating the mino?
  25. Like
    jan251 got a reaction from searching_for_help in article: The Insanity Virus   
    http://discovermagazine.com/2010/jun/03-the-insanity-virus (this article is old, from 2010)
     
     
    phase 2 clinical trial http://www.servier.com/content/geneuro-announces-launch-phase-iib-proof-concept-study-gnbac1-multiple-sclerosis-and-servier
    https://clinicaltrials.gov/ct2/show/NCT02782858 (news article 2015)
     
    Really interesting stuff, though I wish science moved a little bit faster!
×
×
  • Create New...