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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 Foods and Trader Joes near us. The all natural food stores can get expensive but the process of cost comparison gets easier as you go. Over the last few weeks I researched biomed md, environmental medicine mds, DAN doctors, pandas docs. I would have liked to have seen a DAN doctor but in the midwest I could not find one covered by insurance. We just saw an environmental health doctor a couple of days ago. It sounds like he will be looking at quite a few things but for us the first step was a yeast free diet due to past courses of abx. I would find a doctor willing to take a more holistic approach and help you navigate diet changes and supplements. I can imagine the stress of the situation and I am sorry. As someone told me....one step at a time....it is a process, a puzzle and answers will not be found overnight. I would definitely start with a doctor you really like who will take a more holistic approach. Good luck to you and your family.

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 neurologist. I think this is going to be a long road... Also, I keep forgetting to google mycoplasma. What is mycoplasma? Do the pandas specialists do phone consultations? Thank you everyone for help and insight.

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 antidnase b tests. The results came back in the normal range at -20 and -70. I have looked into DAN doctors but the only ones I have found near us do not accept insurance. Same goes for the more holistic doctors in my area. I did take him to see an upper cervical chiropractor. It either helped or was coincidence but his sleep issues overall improved about that time. There is not a lyme lit. md in our city and he has never had a tic bite. Any other suggestions or professionals anyone could recommend? I keep thinking there must be SOMETHING or SOMEONE who could help put together some piece of this puzzle. He seems to be so uncomfortable in his own skin...literally and physically. We have to say 'okay' with the correct inflection to everything he says. He complains of his skin feeling like there is "hair on his body". My gut just keeps telling me his OCD and Tourettes is secondary to something else going on and I am at a loss as to how to help him. I am willing to deal with the TS and OCD but I feel like there is more I can do. FYI, I have cut out most dyes, preservatives, etc. in his diet. Any suggestions? Is there a next step past continuing with a psychologist and neurologist? A couple of other things to throw out there is that he had a rare parasite dx at 3yo. MD prescribed medication but no further f/u or workup was done after that. ALSO, he is basically selectively mute but JUST at school. He has wonderful expressive and receptive language skills but is social 1:1 and with familiar family friends but is scared to death to socialize with peers at school. It breaks my heart. One last thing, I am taking him to an allergist tomorrow who has an interest in environmental medicine and I THINK he will help with the nutrition/supplement side.

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. In the meantime I am trying to find out more info. and supplements to see if this could help his tics. It looks like Bonnies vitamins and other sites I find are for older children. Has anyone tried supplements on such a young child? If so, what brand and amount, etc? Thank you!

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!

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't figure out which way to turn and where to go for help!

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!

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 disappear or become mild to full blown episodes where we become almost homebound. How do you deal with getting your child to school and how do the teachers deal? That is a tough area for us. We are just preschool right now but is scares me for down the road. Is your sons pandas dx? That is our next step and what we are trying to figure out currently. All I can say is good luck and you will be in my prayers. I daily pray for patience and strength to deal with this. It has such a profound impact on my entire family. Feel free to message me anytime if you need a listening ear....

Does anyone have suggestions for a llmd and naturopath. doctor in the St. Louis area? Thank you!

Thank you for sharing your story/information and responding!

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 'returned' to his old self. He was given the dx recently of Tourettes, OCD and anxiety but I feel like our 'cycles' are not typical. I then heard about pandas and our pediatrician is going to test ASO and antiDNAse B. I guess my question is to those of you who have dealt with something similar... 1. Am I on the right track of looking into pandas? 2) Could he have other problems with immune system, etc and could the parasite or parasite tx be a red flag for something else? 3) What type of doctor should we see? WHO can help us? We have seen psychologists, pediatricians, neurologists. I am at a loss of where to look for help and what to look at, ask for, etc.

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!

Hi everyone, I am so thankful to have finally found this forum group. A brief history: over a year and half ago my son became a different child overnight. He has not had a known strep infection but has had recurrent ear infections with bilateral tubes, recurrent croup and other general childhood illnesses. He was recently diagnosed by a neurologist with OCD, Tourettes and anxiety. He is selectively mute at school. He is a very bright boy but when we have 'episodes' I lose my son to his compulsions and meltdowns. These 'cycles' last 1-2 heartbreaking months and then my son is back for 2-4 months until we hit another 'cycle'. During the better cycles there are mild things present....some affirmations to responses and the selective mutism continues at school. After several doctors and begging our new pediatrician has agreed to ASO and antiDNase tests. My questions for all of you who have been through this... 1) Are those tests reliable? 2) Do any of you know of a specialist in the St. Louis area? 3) Besides pandasnetwork.org, qos.com and this forum are there other helpful websites for pandas info? Thank you everyone!