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Everything posted by WorriedDADNMOM

  1. IGG is previous infection and IGM is current or acute infection. There needs to be some reference for negative,positive or positive H for high. Without seeing the report.....it is hard to tell. My kids' was IGM 5.9 with 0.9 or greater was considered positive.....ours said 5.9 H
  2. #Fthisshow....is my first response. 2nd is.....get a good Pandas doc....get treatment......tell your story to as many as you can......Truth always comes to light and wins.
  3. I would concur...more likely herx from abx as apposed to xclear. Maybe try the xlcear brand rather than making your own and see how that works.
  4. Remember.....you get what you pay for. Flat out refused to pay for doctors who wouldn't, couldn't treat Pandas/Pans. Paid many multiples more for good doc.....on a good path currently.
  5. DC Watch this vid series. It really helps you understand how and why certain "mental" health issues are more biochemically involved with gut health, immune issue etc... 5-6 part series. Very layman's terms where anyone can get it.
  6. http://www.pandasnetwork.org/research-resources/us-providers/ I really recommend the guy from Gahanna,OH....about a 4 hour drive from Ann Arbor. He is integrative where he will focus on the whole child. All aspect pertaining to immune system, infections, chemical imbalances, nutritional/mineral deficiency, allergy......It is very comprehensive and thorough approach to healing our kiddos.
  7. Where in Michigan??? I can recommend REALLY GOOD DOC north side of Columbus,OH with a probable long lead time to get in to.
  8. This is beyond unacceptable. Do not pay any bill where a doc treats you, your child or your concerns this way. Get to a DAN/PANS/PANDAS doc sooner than later. REPEAT.....DO NOT PAY ANY BILL WHERE A DOC DOES THIS. TELL THEM YOU HAVE NO INTENTION OF PAYING.....IF IT GOES TO COLLECTIONS....STAND FAST AND DO NOT PAY AND TELL THE COLLECTION AGENCY WHY YOU ARE NOT PAYING. They will get it and no pursue it....unless they are really big jerks.
  9. I would agree on the tonsils. I also would say that while abx are hugely important....supplements for immune support and overall health are equally important and critical.....just in a different way. Getting to a Pandas/Pans/Lyme literate integrative doc will be huge in seeing gains in health and immune function.
  10. Pandas....probably not......PANS......YES. I know kids who had febrile seizures post flu mist. So Yes.....I would say there is a link.
  11. Spot on Mama2alex!!!!------echoing.
  12. Echoing Dasu.....better to hit it early and stay ahead than let it get full blown.
  13. Sachromyces Boullardi is critical for anti yeast when doing long term abx like zith. It can be taken at the same time as the abx and the probiotic away from the abx. We like zithromax. I would say a worsening of symptoms for us was actually a normalizing of the immune response.....ie mycoplasma titers high....then zith.....and a big letdown of mucous from the sinuses and chest......being able to get it out. I also will say that zithromax has immune modulation properties and stopping cold turkey is not what is best........see below video. A M,W,F prophylaxis for a period after the long term is recommended to not cause the immune response to reactivate. https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwiE-N_5_bjLAhVGKiYKHQ4wBOEQtwIIHzAA&url=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3Du7Mn-v5f23A&usg=AFQjCNG6VBOpoJ_Co5ERfJPoDyT5d5IfwA
  14. Prefer zithromax as it is broad spectrum, been used for along time, for people with penicillin allergy. Not to mention, it supposedly has immune modulating properties. I cannot say enough about probiotics and Sacchromyces Boulardi combo with long term broad spectrum abx.
  15. Mike Zithromax would take care of both.....However, it needs to be an all above approach. There is no magical single bullet. Long term zith is a good place to start....but treating with probitoics and sach boulardi are huge too. Then eliminatiing potential food triggers or other environmental triggers, controlling inflammation, supplementing with varying vitamins and minerals. It really needs to be an all encompassing multi-faceted approach to healing.
  16. Could not agree more with nicklemamma and LLM.....other infections are huge.....mycoplasma pneumonia is also a major one for us and many. We did do the Monolaurin for quite a while early on.. https://www.lauricidin.com/?utm_source=google%2526utm_medium=shopping%2526utm_term=monolaurin%2526utm_content=Lauricidin%2520Product%2520Listing%2526utm_campaign=lauricidin%2520retail&gclid=CNT57-Cj-soCFQctaQodPOILPQ I would say low grade fevers are indicative of some kind of immune issue fighting a chronic infection(s). We had 99.5 infections nearly constantly during tics and tremors and behaviors and mute periods. The flu later that spring with high fever....our kiddo improved a ton after the 103 fever broke after about 1 week. This should be another piece of the puzzle to document and tell your doctor. BTW----do not allow a doc to say dark circles are allergies. For us it was not.....If they don't look well, act well.....then they are not well. After we started our protocol those dark circles went away. I would agree with the use of steroids......if there is any lingering acute or chronic infection.....this can make things worse. Also, look on the Pandas resource network for Pandas/pans friendly docs. This is the route to go for sure.
  17. I would say Schulman videos about zithromax extended use and then tapering were quite helpful. Ohara also.....tons of good info to start with. We use a Leading Doc in Columbus,OH area and have been very happy. Any doc worth their weight in gold for pandas or pans will have a long wait.
  18. Hi Jordana!!!! "My doctor still thinks its an emotional issue as SC can sometimes have emotional triggers and will cure itself??" I would say this is BS....to put it politely. Main stream medicine will not address these issues.....other than antipsychotics or other brain altering issues. Some may throw abx at it to see what happens. You really need to get to a good integrative doc that is Pandas/Pans friendly. I recommend Zithromax. Here is a video we found early and wanted to try it. Integrative Doc did this and we have been very happy. It discusses zithromax and it's properties of immune modulation. Her name is Susan Schulman. Use is usually 60-90 days straight then a tapering of zithromax......we did M-W-F for about 30-60 days. I cannot stress enough about probiotics roughly 12 hours separating probiotics and antibiotics. Sacchromyces Boulardi at the same time as the antibiotics as this can prevent yeast overgrowth.....which will be another set of problems. http://www.thedoctorsvideos.com/search/detailed/1/?sort=addate&search_type=&search_id=schulman Dr Nancy Ohara----good summary video. Dr Kendall Stewart-----very indepth video about Methylation. Part 1 of 5......over an hour long. Def worth the watch. Your child sounds a lot like ours. We had infections and vaccinations implicated in addition to vitamin and mineral deficiencies found. Things can, do and will get better. If you are seeing improvements after abx or after high fever, these should be good signs to watch for. I really recommend getting to someone with a comprehensive knowledge of Pandas/Pans.....immune function that can test for and treat infections, vitamin and mineral deficiencies, gut issues, etc........it is a whole approach to healing. I would ask....at 6 years old....when did he get his 60 month MMR booster??? How much after did the tics start??? Should you have any questions....please PM or reach out.
  19. Mike, some things to research that are pretty easy to treat OTC if your not under a docs care: Zinc deficiency as it relates to pyrrole disorder. http://www.integrativepediatricsofohio.com/topics/biochemical-diagnoses/ https://www.truevitality.com.au/articles/pyrrole-disorder/ http://healthy-family.org/why-am-i-so-edgy-learn-about-pyrrole-disorder-pyroluria/ Vitamin D deficiency. http://articles.mercola.com/sites/articles/archive/2014/05/28/vitamin-d-deficiency-signs-symptoms.aspx http://www.medicinenet.com/vitamin_d_deficiency/article.htm http://www.wsj.com/articles/elite-athletes-try-a-new-training-tactic-more-vitamin-d-1453745154 Let me know if you need anything else.
  20. I would say shingles/herpes reactivation can cause skin issues/pain without many eruptions. I agree about the Mycoplasma P and Strep. But others to look at would be a Herpes panel. I would say the Zithromax for 5 days is probably not enough time to start debulking any chronic infection. Since it is broad spectrum....a probiotic would be warranted in addition......... opposite times of the day. Let us know if you need anything else.
  21. I would say for us, we did see an increase in some signs. Tics.....and.....letdown of mucous on previous asymptomatic infections.(other than behavior) Are you on a DAN protocol???? There is a list of good practitioners......Here it is. http://pandasnetwork.org/researchandresources/find-help/usproviders/ We did talk to Dr K in Chicago upon learning about Pandas/Pans back in 2011. We did not want main stream medicine as we felt it was over their heads. We ended up finding a DAN doc for the behaviors..... the Doc in Gahanna(columbus area) OH whom we have been VERY pleased with. If your child does not see one....I recommend seeing one that can: 1) debulk infections. 2) Chill immune system. 3) control inflammation. 4) Check for food allergies and others. 5) Supplement vitamins and minerals that are lacking. 6) Control and support future infections. Finally, it really is a puzzle of many/various things that need looked at. It must be a comprehensive investigation into our kiddos to help them be the best. PM me if you need anything else.
  22. I STRONGLY recommend talking with a doc about this. Our Leading Pandas doc has a "sick protocol" for us. I am giving this as help and NOT medical advice. We take 3 drops(kids) and 10 drops(adults) for TWO DAYS. Morning and evening.....this is done at onset of illness......as early as possible..... AND CAN ONLY BE DONE 2 TIMES PER MONTH. This is in conjuction with high dose(as much as you can handle) vit C and 25-50mg of Zinc TWICE daily at onset and for about 10-14 days.......AGAIN VIT A for only TWO DAYS You can OVERDOSE on vit A just like other vitamins. ********PLEASE TAKE NOT OF THIS. We buy the below vit A directly from our doc. http://www.amazon.com/Klaire-Labs-Micellized-Vitamin-Health/dp/B004JP675O As for how it works.......This protocol can and does limit a cold to less than two days........ not sure about measles specifically, and shingles(herpes) very quickly. Can't say enough good things about it. You must educate your self on what your taking.
  23. I strongly recommend a "LEADING" pandas/pans doc in Gahanna,OH....right near Columbus,OH. http://pandasnetwork.org/researchandresources/find-help/usproviders/
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