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906bell

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  1. I am a new member so I am sure others will chime and give good advice. I am still navigating treatment options and searching for help too. My 4yo has Tourettes, OCD and anxiety. My other children are younger and I am hoping they will remain symptom free. I started with switching to a pediatrician who took more time to listen to me. He is not 'natural' but it was a start. After dx from a neurologist I started researching more natural tx options. We started with an upper cervical chiro. due to sleep issues. I then cut out dyes (for the most part) and most preservatives. We have a Whole
  2. Phasmid - The rare parasite was dientamoeba fragilis. He was treated for it and around that time was doing great. FYI/update - we saw an environmental health md/allergist today. He did a blood work-up and is going to work with us on the nutrition aspect. First cutting out yeast. He did say if no hx of strep then pandas was not a consideration. He also didn't feel like the past parasite was an issue. hmmm. I hope we get somewhere with him...he is out of network for insurance...so still costing $$$. My husband feels like I am grasping at straws and that I should stick with the ne
  3. Hi everyone, I have posted for help these past few weeks and appreciate everyone on this forum who has responded with such excellent advice and supportive words. My son had sudden onset of OCD and tics right before he turned 3yo. He was recently dx with Tourette's, OCD and anxiety. The neurologist also said he would continue to see him over the next few years to rule out Aspergers. My son changed overnight and struggles with his new behaviors. At my persistence his new pediatrician agreed to look at the possibility of pandas. He consulted the neuro. and they ordered the ASO and antidn
  4. Hi everyone, my 4 year old son was dx with Tourettes, OCD, anxiety this past fall. He also has selective mutism (just at school) and the neuro. could not yet r/o aspergers. We are going back to the neurologist for our follow-up visit next week and I am trying to gather info to be prepared with my questions for him (the neuro.) Upon my requests his neuro and pediatrician just agreed to anti DNAse B and aso test for pandas. I am looking for a good integrative md or holistic md since I am concerned his 'condition' started after a dx of a rare parasite but have not found a good referral yet
  5. There is a good book written by a man with Aspbergers called, 'Look Me In The Eye' you may want to read. I would try to talk about what he is doing, comment on things he is interested in so that he can converse with family members on the things that interest him. Keep it low pressure but offer many opportunities to talk! Good luck!
  6. This is probably a very dumb question but could my son have lyme if he did not have a known tic bite? I am trying to put together the pieces of the puzzle on my 4 year old son and someone mentioned not to rule out looking at lyme and seeing a llmd. As far as I know he has never had a tic bite although we do live in the midwest. He does have ocd, tourettes, anxiety, selective mutism with peers and had a rare parasite around the time all of this started. We are seeing a psychologist, pediatrician and neurologist but I feel like we are missing something...pandas, diet, SOMETHING. I just can'
  7. Hi, I am new to this forum and believe my son might have PANDAS although his neurologist has not ruled out aspergers. Someone suggested I try a DAN doctor. Does anyone know of a good DAN doctor in St. Louis? I looked on ARI and there was one doc. who specializes in environmental medicine but on his website he does not mention DAN. I am hoping not to travel if possible. Thank you everyone!
  8. I can relate. I just discovered/joined this forum looking for help and advice for my son also. I have three children ages 4 and under. My 4yo son went from a perfect child to turning into a different child almost overnight right before he turned 3. He was recently dx by a neurologist with OCD, Tourettes and anxiety. His OCD sounds JUST LIKE your sons! We have to say 'okay' to everything he says while using appropriate inflection. A lot of his OCD is how we say things and respond to him. We have cycles though where he appears better for several months with just mild OCD and tics disappe
  9. Does anyone have suggestions for a llmd and naturopath. doctor in the St. Louis area? Thank you!
  10. Thank you for sharing your story/information and responding!
  11. I posted for help on the PANDAS forum yesterday but thought I might try this forum today after reading more. Right before my son turned three he became a different child melting down over how we walked, talked, etc. He started preschool and was selectively mute despite having excellent language skills at home. Shortly thereafter tics started. We started having 'cycles' of 1-2 months of my son barely being able to function due to OCD type behaviors to my son 'returning' to his old self (overall). About 6 months after all this began he was dx with a rare parasite. He took abx and again 'ret
  12. Phyl,I did a search on d. fragilis and found your name. I wondered if your 'journey' would provide any insight or helpful info. for our son. We are trying to have his doctor look into PANDAS. BUT last year he was treated for d. fragilis and we his other symptoms disappeared for a few months. Not sure what you have dealt with but any info would be appreciated.Out of letters!thx. jill...

  13. Thank you everyone for your posts and info. What is a llmd? If my son does not show chronic fatigue could he still have lyme or mycoplasma? I am willing to look at everything but I know I will have difficulty getting pediatrician on board. Also, for those of your whose children started on abx....was it after testing or were your docs willing to see if abx helped? How long were initial abx course for and which abx? Thanks again!
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