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  1. Past hour
  2. I'm pretty happy to read this because my daughter is taking Clindamycin right now and we're in the process of setting up ivig!
  3. Today
  4. 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
  5. Yesterday
  6. I am not a water expert, but I do recognize reverse osmosis as being able to take a lot of stuff out (but apparently not absolutely everything). But I believe its expensive. If you could get any more information about what the offending substance is, that might help you save money. But of course, its hard to get that info, so I can understand the shotgun approach. Watch out for slick salesman that tell you some cheap filter gets everything out.
  7. Thanks Sheila, I have done a lot of research on the topic but was hoping some people on here may have actually tried this treatment option. In Australia however, the legality is still a big issue as they have only just legalized growing the plant to extract CBD We are a long way behind the US in this regard. Thanks for your input and hoping to hear from some people that may have tried. Thanks.
  8. Last week
  9. Martin -- I'm so behind on these threads, I apologize! I'm trying to wind up a book on tic triggers and it has me very tied up. I keep thinking I am done and then something else comes up to delay it. I would not try to do an entire fast.The point of mentioning that was mostly because it was of clinical interest--it proved that diet made a difference. Dairy and wheat would be a good place to start. But also keep a log everyday. Someone wrote how corn was the worst thing for them. . . it is hard to know what the biggest issues are. But wheat and dairy are two of the most common, in general. I think the elimination diet, as you mentioned, makes the most sense as an approach. It's great you are making changes in the home! As for essential oils, usually those are OK, though I wouldn't go overboard with them -- and some find they need to be diluted. Reports of a contact allergy (skin rash) are definitely reported, and if they can bother the skin they also have the potential to cause problems when inhaled. This is an interesting article that warns against their use for asthma patients http://www.aaaai.org/ask-the-expert/oil-diffusers-asthma In any event, you might ask yourself why you need to use the essential oils and if you are set on using them, think about using a minimal amount. But to answer your question, yes we are mostly talking about chemically scented products as far as tic reactions. It would be interesting to have a study on essential oils and tics. If you learn anything, please let us know!
  10. Can anyone recommend a good lyme-literate doctor in NJ/NY area (preferably northern NJ but will travel) that would be able to hand a 5-yr old?
  11. Hi Ssonheim, I'm wondering how things are now--did they settle down as the cold hopefully went away? Or have the tics remained the same? Does the doctor think the nose/nasal yeast infection could be related to the steroid spray? Can you get her checked for a systemic candida infection? Maybe an antifungal medication will be called for -- a doctor could tell you. What is her diet like--that of a typical kid, or is she on a restricted diet of any type? For sure you can have hope that it will go away! Your instinct that it is not normal is correct. Just because it is common for doctors to see kids with tics doesn't mean you want to ignore them. If you look at it from the standpoint of allergy, as one doctor suggested, then it makes sense to make adjustments at home to avoid all allergens and also to watch her diet. Some nutrients could also help. Have you ever had time to do an overall allergy approach at home? I think you have good clues to what is going on and can zero in on efforts that will help.
  12. Hi Moose_man22 -- I was waiting to see if anyone responded to this. I know some people have tried it and found it helpful. NORML is one of the best sites for marijuana information. This link talks about its uses for TS http://norml.org/library/item/tourettes-syndrome Of course the researchers only suggest it for "treatment resistant" TS, even though it tends to be safer than the conventional drugs used for TS and some would recommend that it should be a first line therapy, not after everything else fails. (Not that marijuana or CBD oil is without some potential side effects.) Here is an article about pediatric epilepsy and CBD oil (again they say treatment resistant.) http://blog.norml.org/2016/01/27/study-cbd-oil-highly-promising-in-pediatric-epilepsy-treatment/ I hope this is some help!
  13. Hello,

    I found your old post and I hope you can reply.... We are also suspecting leaky gut because we have candida in the stool. Did you do any specific supplements for leaky gut and how long did it took to heal? Any specific tests?

    Thank you so much!

     

  14. I want to remove everything. My kids have high lead, but my daughter was in the 95th percentile for things like perchlorate and several other non metal things. She also gets rashes from bathing, even when no soap or shampoo is used, so the water must be irritating her skin. I want to remove everything I can.
  15. I have heard about this, and tried to find more information online, but haven't been very successful. I don't understand how it works, or why it works, and I am interested.
  16. Has anybody ever tried to do an emotional correction? I took my daughter to a practitioner. She figures out with light touch, what is wrong physically, emotionally, mentally etc. through applied kinesiology, health kinesiology, one brain and other mediums. I did not tell her one word and she figured all out on her own!! All emotional and physical issues.... The reaction to the correction was startling, it was pretty severe. But once it has all passed, I think we are seeing progress. If anybody knows more about this, I would love to hear it......
  17. What are you looking to remove from your water? Is fluoride removal a priority?
  18. Wondering if anyone knows about or has tried this?
  19. Has anyone had success with SLIT for seasonal allergies? Is there an advantage to the shots? I've read they might be more effective. The SLIT certainly seems an easier option, but want it to be effective.
  20. Can you please post the Orange County doctor? I would like to take my son there? Thank you!!
  21. Can you please post the Orange County lyme doctor? I would like to take my son there? Thank you!!
  22. Hello Warriors- (since we are all fighting to save our children).Every day I am still in shock over what pandas and co infections can do. My son, like all our children, is so brave for the suffering he has endured...our children deserve quality of life... I was wondering if anyone has a recommendation of a lyme/bartonella doctor? My son was negative for igm but 160 for igg on the igenex bartonella test. Pandas treatment alone hasn't worked. We tried the azyth/ rifampin combo but we found out through bloodwork that he can't take rifampin. Any recommendations? Appreciate it!
  23. I've been looking for a place to post a trial we did with phosphatidylcholine (often abbreviated PPC), and rather than start a new thread, I thought I'd build on this one. Hope that is ok. We have been doing a trial with fishoil and PPC for the last couple of months, going on and off it, and recording results. The idea to use PPC came from a member of another small group that I am in. That person used very high doses of it (with fishoil) last year and found that whenever they were out of it, their daughter got worse. So based on that experience, we decided to try similar (but not quite as high) doses for our PANS son. The photo attached is a boxplot (aka a box and whisker plot) of two sets of results of how much soap our son used (which is a measurement of his OCD) when on or off PPC. I had to split the results into two data sets (days he had showers, and days he didn't), because on the days that he had showers, his soap use was very different - sky-high on account of the shower process. In the shower, he had to have soap suds on every square inch of his body, while on the non-shower days, soap was just up to his elbows a couple of times a day, typically. If you are not familiar with box plots, you can read about them here: http://www.wellbeingatschool.org.nz/…/understanding-and-int… . The underlying data is not ideally behaved for analysis, but the results are nevertheless statistically significant (according to something called a t-test). That means that we are fairly sure there is some positive effect with PPC, it doesn't necessarily mean that the effect itself is very significant. Note that the scale on the graphs make it look like PPC helps more than it does. He is still using 20-30cm of soap in the shower when on PPC - but that is a lot better than when he's not on PPC, so we'll take that. One downside is that this treatment costs approximately $3 a day the way we did it (high dose and taken with fish oil). Just because it seemed to work for our son (and that other parent) doesn't mean it will work for anyone else.
  24. DS17 has been on 875mg - 1000mg Augmentin since 2012. I'm sure most bacteria are resistant by now, which makes me think the abx is only affecting the cells across and in his BBB. The probiotics he takes seem to be working all these years (Florastor and switching between 2 types of Klaire and Theralac). Sigh.
  25. I'm looking for advice on water filters, both for drinking water and bathing. I'm renting, so my options are limited. I'm feeling overwhelmed trying to figure out what I should be purchasing. Reverse osmosis for drinking water- but is there one that's the best that I can remove when necessary? And for bathing- is there a good option? It seems like the filters that go on showerheads don't get everything, unless I'm just not looking in the right place, or there's something I'm missing. I'm really not sure where the best place to look or purchase is. This is a priority for me, so I'm willing to make an investment in good filters, but I'm also poor.
  26. My kids are only 10 and 9. They've been on abx combo since 2013. They may need then until they are 21.
  27. I have no idea but I'd love to hear about plasma exchange. Did you see any benefit from IVIg only? For the plasma exchange, how many days PEX? Did you follow PEX with IVIg? After starting plasma exchange, how long before you saw improvement in OCD, if that was a symptom? Thank you!
  28. It's been awhile since I have been on to given an update on my son. He is doing well and finished a year of plasma exchange treatments in July 2015. His energy levels are much better but he is still on supplements and medications. He has not had any strep infections and still takes penicillin VK 250 mg daily. In addition to his supplements and medications, he also takes the 90 billion Ultimate Flora probiotic for men. My son is 17. He was 13 years old when the Cunningham Panel test was run and antibodies were found in December 2013. He started treatment with high dose antibiotics, then IVIG, and then went on to Plasma Exchange. My son has been on antibiotics since December 2013. What I am wondering about is how long is too long to stay on antibiotics? I am afraid he could have a relapse if taken off. His doctor wants to leave him on the antibiotics because of a possible relapse. Are any of you dealing with this situation? Would love to know your opinions.
  29. Thank you frikfrak for your reply! We really are concerned about having our toddler have to undergo the standard IVIg, but we don't want to waste time with subcutaneous either. Thanks again for sharing your experience!
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