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Rlz

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Rlz last won the day on December 23 2015

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  1. Part 2- any suggestions for anti inflammatories? Anyone tried pleo form drops? Thanks in advance!
  2. I was wondering about suggestions for anti inflammatories. I can't find anything that works like advil- advil even works better for my son than all the ivigs he has had. Curcumin and fish oil increase his sympt
  3. Thank you Amy for all the information!
  4. Can you please post the Orange County doctor? I would like to take my son there? Thank you!!
  5. Can you please post the Orange County lyme doctor? I would like to take my son there? Thank you!!
  6. 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!
  7. Thank you to all of you. I was able to get the augmentin from a local doctor. Pandas is such a nightmare and I feel for every child and family dealing with it.
  8. i agree with others here-find a doctor who will do the bloodtest-titers, anti d-nase, etc.
  9. thank you for all the wonderful suggestions. I really appreciate it!
  10. My son has been on augmentin for 4 weeks per Dr. K in Chicago. He is doing better a little better, reading again, less urinery frequency. We are scheduled to go back to Chicago for IVIG(first time) in a month. Dr. K won't let my son stay on augmentin until the IVIG. He says we need to stop it for 3 weeks and then go back on it a week before IVIG. I am so scared because I told Dr. K that any little change, even the time of medicine sets us back. I know if we stop augmentin we will go back to full blown pandas!! My son doesn't want to live then! I am so confused. Dr. K says he won't allow us to stay on augmentin due to long term side effects of it. My son has only been on it for 4 weeks and I was only asking for 3 more until we come for IVIG! Now i am trying to brace myself for full blown pandas. I will need to cancel IVIG in Chicago cause i won't be able to get my son on the plane. We were seeing a little light at the end of the tunnel. I don't understand! Some doctors say you need a few months to see progress. I am now told to stop augmentin. When i even gave my son the medicine a half hour later one day we escalated for 3 weeks. Tonight is the last dose i have and i know in a few days we will be back to ! I begged dr. K for just a few more weeks. Stopping the augmentin will set us back and then starting it again in 3 weeks doesn't make sense to me!! I am so scared and terrified!!! Full blown pandas for us included basically every symptom!! Any advice!!!
  11. Thank you for letting me know!! I really appreciate it! I am going to try it.
  12. Wondering if anyone has used yakult for a probiotic? If so, has it been ok? No pandas escalations?
  13. Thank you for the suggestion! Appreciate it!
  14. Any suggestions for probiotics that don't cause reactions? We tried culturelle and all my son's symptoms escalated full blown. I am scared to try anything else and am looking for ideas. Anyone had experiences with yogurt working? One doctor recommended yogurt but i can't find any without strep strain. Thanks in advance for any advice!!
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