WorriedDADNMOM

As for testing, I think Fry Labs in AZ does a test looking for biofilm.......which is another added puzzle piece. I think fear of needles is quite common. You don't speak of symptoms or other blood tests previously. Do you have a known tick bite?? If so, and the symptoms like up with Lyme.....starting ABX long term i think would be beneficial. Any strep infections just previous to the lyme symptoms???? I have heard a few times that strep "triggers" latent lyme. I think getting to an LLMD really would be beneficial.

Bill, Our worst Pandas kiddo had a lot of these "low grade fevers"....went mute twice, tics, tremors.....in addition to all the behaviors. Was horrible. However, with good comprehensive treatment.....your kiddo can be helped. Best of luck.. Here is a link for encephalitis. http://www.nlm.nih.gov/medlineplus/ency/article/001415.htm

I think it is a combo........ can't really be sure. I started taking 2 SJW per day about 2/3 of what my kiddos take. I notice very subtle "chilled out ness" if you will......not that I had mood issues....more just to try it and see how I felt. I would say lithium orotate supports a person/kiddo with mood stability....ie.....preventing anger or outburst from fragile frustration.......so called bi-polar. SJW is supposed to promote more positive mood and "help" you see "the bright side" . It is kinda hard to explain. So with that said, I cannot say either way one or the other.......so default to combo. Prescribed by "Leading Pandas doc" in Ohio....Integrative Pedi but does natural first then SSRI stuff for support only if needed/wanted by parents. We have really not wanted to go there.

Lithium orotate has been huge help for us for mood stability. However, sjw has been great for improving mood. I must say that we are doing everything leading pandas doc said to do. So I can not be sure that there has been a magic silver bullet. I could not have done what we did without a good doc. Two thumbs up for lithium orotate though from us.

billn, not sure if Columbus,OH is close enough, but I can advise of good DAN, Integrative Pedi that has the whole approach. Reply or PM me and I can give you link for him, website, videos and other info.

Props to enhansa and/or enhasa repair. We threw everying the doc said to do and in a good place. So I really believe is has to be many different supps to get healing and immune strength and functioning.

I think Clindamycin is broad spectrum.....Are you doing probiotics separate from the clinda abx???? What about Sach B with the abx???

theolis and sriramcs---------------I REALLY WANT TO ENCOURAGE YOU.....Your kiddos can and will get better. You just need the right approach for your kiddos individual needs. You really need to get to an Integrative Pedi from this website below. I found our doc from Gahanna,OH that is now a "Leading Physician." I cannot say enough good thinks about him. I am glad we found him back then....3-4 years ago before he was considered well known. http://pandasnetwork.org/researchandresources/find-help/usproviders/ It is a very comprehensive approach. Summation follows: 1) Debulk any infections(viral, bacterial, fungal and parasitic) It could be a combo of more than one. Many times it is multifactoral from infection(s) or cascade of multiple infections. 2) Cool or chill the immune response and control inflammation caused by above issues in #1. 3) Targeted nutrient therapy to give the body the high octane fuel it needs to balance what is going on, heal and function properly and efficiently. 4) Eliminate allergy triggers (foods,pets, etc) to again give the immune response a chance to chill out. 5) Finally implement a plan for dealing with future bacterial and viral infections to prevent the infection cascade that many times happens as a part of #1 that started the whole thing. I cannot say enough about Zinc, vit c and vit a as a sick protocol. I, again want to say....Stay encouraged, get information, research and advocate for your kiddos. I will say don't waste time trying to chase or convice main stream medicine about Pandas or Pans. They just can't or won't deal with it. Still trying to figure out why. Here are some other links that really helped us on our journey. Good luck and God Bless. Any thing you need just PM me. I hope this info helps. http://www.bing.com/videos/search?q=dr+nancy+ohara&FORM=HDRSC3#view=detail&mid=B8315FFF5F842E135A81B8315FFF5F842E135A81 5-6 part series worth watching....Think about your family history when watching it. It kinda comes down to methylation as a possible link to many disease process as they relate to Neuro-Immune Syndromes. http://www.bing.com/videos/search?q=dr%20kendall%20stewart&qs=ds&form=QBVR#view=detail&mid=2B4C4D2EB859CA78F0912B4C4D2EB859CA78F091

Do you have a Integrative pedi you can get to? Lithium orotate st Johns wort, all natural supplements have been huge. I really recommend that getting to a DAN or integrative pedi that can assess thoroughly your kiddos situation. Feeling for your situation and hoping for the best for you and your kiddos. Let me know if you have any other questions.

Wow, this is a good vent ...so here it goes. Echoing many of the previous ones. I have learned: 1) I AM MY child's best advocate......pure and simple. 2) Two parents, one researcher and one plan implementer makes this a whole lot easier. 3) KT---AMEN---I've learned that my kids are worth every bit that I personally struggle. 4) Hope-----This is a journey that nobody would dream of or wish on their worst enemy. None of us asked for it and yet most of us embrace and face the challenge. 5) Hope-----I now have more compassion for others who are ill. 6) I have learned way too much CRAP about Pandas, Pans, Autism, ADHD, Methylation, mental disease, neuro-immune issues, inflammation, targeted nutrient therapy.......and the list goes on and on. AND it was all by force and a need to help my kiddos. 7) I have learned that when it comes to docs that can't, won't, don't want to help me help my kiddos, I could not give a SHART about them. 8) I have learned, if the docs service sucks or they don't help you fix your kiddo(even marginally) or you don't learn something from them......... don't pay the bill. 9) That there are many willing and able docs going against the main stream medicine to help us help ourselves and kiddos. We just gotta find them and get more of them. 10) That there really isn't anything I would not do to help my kids. 11) THAT THIS BOARD HAS BEEN A LIFESAVER, TIME SAVER AND A SOURCE OF INFO AND HOPE. THANKS TO EVERYONE WHO POSTS!!!!!!!!

I wonder about the needle phobia.....dd High Mycoplasma titers IgM 5.9..... Way high with similar stuff. Mutism a couple times...once for over an hour or two.......tremors in addition to normal tics. That said....when we were on Zith....initially regular 5 day script, IgM reduced to 3.5 and these things subsided/reduced greatly......the needle phobia was the "a-ha" moment. That irrational fear was gone quick. Tremors went away..... I would not dispell the lyme, but look for anything and everything.....including mycoplasma and EBV(mono).......esp if you have a good doc on hand that is Pandas/Pans literate and friendly.

Not a Lyme expert....but somewhat know. Have you considered alternative natural meds, supplements etc.........???

Use it love it too..... It with the everything but the kitchen sink at our kiddos. In a good place. For what it is worth....I recommend doing all this treatment stuff with a good DAN or Integrative Pedi. I am fairly smart and well versed in Pandas.....however, I could not have gotten my kiddos to the point of where they are at by myself.

Yep Pandas.......and yes one issue with ours was........drum roll please...................................................Impetigo!!! Keep the appt and try to learn everything you can. I have two videos on another post today. Look for them.......they are good to help understand what is going on. Let me know if you have any questions.

If I am being honest....I don't know. Some of it by testing and dumb luck I guess. My brothers and sisters and I all had this growing up. Eczema, vomiting......most of us were not breastfed due to milk intolerances. Soy formula. As for testing, I did ask the pedi who was not on board with the Pandas thing to test for Mycoplasma. Testing showed very high IgM which I did not find out about for several months later when we were still fighting the tics, behaviors...then tremors and uncontrolled movements and mutism a couple times. What I do know....3 dd's all with milk "issues" and struggled some with breast feeding and transition to whole milk at 1yo. Oldest......severe eczema on skin no other issues. DD #2 severe projectile vomiting. No eczema.....MANY behaviors post MMR #1 and #2......DD3 youngest......severe colic....and I mean SEVERE. Crying 6-8 hours a day to the point of losing voice. No vomiting and very minimal rough patchy skin. Reactions to MMR #1 and #2 Once we had DD3 and put her on Nutramagin where the formula had the protein broken down she was perfect after that...... up until MMR #1 then #2. This is when we cut milk in DD1 We took DD1 off milk and her eczema vanished to perfect skin. This was key for us learning about our milk connection and subsequent issues. We still had milk quite often up until dd2 "came down" with pandas. We think she definitely had it going on for quite some time. With that said.....When dd2 behaviors culminated with severe mental, emotional and neuro stuff......tics, uncontrolled movements and tremors....... I started researching Pandas. It was during the initial issue that having her on Penicilin(after amox) started controlling the tics. So this was the a-ha moment that infection and immune dysregulation are a part of her picture. During the next year.....we tried greek yogurt after tics had been gone for some time. This greek yogurt, unbeknownst to us, had a strep strain in it. Tics were right back. Then we had another issue where we allowed her to have some blue cotton candy.....again within minutes....less than 60....tics come back. I was never understanding of these types of Fast forward to today.....she is mildly having issues. We still have some very mild, In comparison to previous, behavior and emotional stuff. Very few tics that come out of nowhere, but are hardly noticeable.....except to us parents......and they wane very fast. She can have some cheese and ice cream.....with some belly pain during digestion. I could and probably should eliminate all dairy. In summation, I think there are issues with infections/ foods/allergies etc that may be internalizing symptoms. And their severity may vary and be under the radar if you will. But after they come to the surface and you start to physically see tics, major behaviors, etc......I think it is easier to correlate a "trigger".....BUT that does not mean there is not something going on internally. We, as young busy parents, missed it with the 1st two dd's and did not figure it out until dd3. Two of my favorite A-ha videos that really spoke to our situation are as follows. They are pandas, autism and neuro-immune related videos. It really is about connecting ALL the dots. Affecting change in the body by eliminating infections/immune triggers and supplementing where the body can heal itself and and function at peak ability. I hope this helps you in your journey. Bunch more here: https://www.youtube.com/results?search_query=pandas+strep

I don't however, here is a good article with a venn diagram. I think it visually explains quickly what many of us parents are up against. Most educators see and know about Autism, so they should be able to understand teaching techniques and dealing with our kiddos. Best of luck!!!! http://www.ageofautism.com/2011/11/autism-and-pandas-.html

The short answer is "You get what you pay for". We could not/would not mess with what the doc was saying to do. For us we have used the exact stuff that the doc prescribed. Nordic naturals is good. Kirkman, Klair, Prothera, Lee Silsby, Pure Encapsulations are all brands our doc recommended and we purchase from him directly at a nominal upcharge. We get free shipping However, we have bought big box store OTC--- Zinc, vitamin c, St Johns wort maybe a few others. I would think melatonin would be OK. As for the probiotics......Staying away from strep containing ones would be advisable. Also, many of the probiotics listed above are compliant to GFCF, GAPS, SCD and other food sensitivity diets. Many if not all the brands listed above can be had over the internet probably lower than a retail establishment.

Basil, Glad your here. Our stories very similar...... Several issues and observations. Let me know if you have any questions I can help with. For us it really was a step by step cascade of increasing symptoms. We have had adverse reactions to vaccines AND bacterial and viral infections. With that said: 1) Milk allergy is part of the connection. We had behaviors in middle dd before tic explosion and worst major exacerbation. 2) Eliminating dairy in an intolerant person will help eliminate inflammation and an immune response. During worst of initial exacerbation, yogurt, milk, blue dye......would all cause return or increase in tics/behaviors. 3) Strep, Mycoplasma and EBV(mono) would be good ones to check. Among others.....need more history...family,previous infections etc. 4) Zithromax for possibly 30-90 days(or longer) then transitioning to a periodic (m,w,f) prophylaxis to immune system modulation. Dr Schulman has a video of pandas docs using Zith in this manner. Kinda similar to a tapering of steroids. See this link. 5) Eliminating triggers....milk, pets any thing that illicits an immune or allergy response. .....basically knowing again family history to build as comprehensive a picture as possible. 6) Determining vitamin and nutrient deficiency. Supplementing where needed. 7) Omegas-----Cod Liver oil for fighting inflammation and helping heal the brain......."essential fatty acids" that our just that... essential for our body. 8) Curcumin-----Enhansa.....again anti inflammatory properties.....boosts immune system. 9) Having a sick protocol to "prop up or assist" immune system during viral or bacterial infections.......Zinc, Vit C and Vitamin A I think. I know this sounds like a lot.....but it is what we have done and we are in a good place. It is very comprehensive and thorough. I will say that it has all been under the direction and supervision of a DAN/Integrative Pedi. We had 3 kiddos that were all affected by both vaccines and infections(Strep and myco.....and EBV) Our whole house was in a state of chaos, we had to do anything and everything our DAN said to do. We are glad we did. Should you have any questions, please ask. Good luck and God Bless........It does and can get better.

Not sure really. ABX Zithromax and now PenVK really worked for us to stop tics and improve behaviors. Any natural supplements being used to fight inflammation??? Cod Liver Oil, Curcumin. What about diet changes??? Sugar?? I can say for us, eliminating pets, milk and trying best we can with whole foods....coupled with MANY supplements have really helped us. If you have a DAN or Integrative Ped who can do a comprehensive overview for infections both bacterial and VIRAL, vitamin, mineral etc...imbalances. Plus dealing with future infections while trying to "chill and heal" the immune system. Let us know if you have any questions.

Yep, textbook, carbon copy....you name it........ Pandas/Pans!!!!!! I would say your in a good place. Your here, your docs giving abx on board. I would just ask where are you located??? Got a Pandas Literate doc??? PM me if your in the midwest and want a great doc in Ohio.

I recommend it as a natural alternative. I was told by DAN/Integrative pedi that it is more for stabilization of mood as opposed to combating depression. St. Johns Wort has help lighten the mood and can improve happiness. You also mention...."over the winter" and "rebounded in the spring". I might suggest looking at vitamin d levels too. I won't get into my whole story, but we did EVERYTHING our DAN/Integrative pedi told us to do. It really is about optimizing and balancing everything in our kiddos. I could not have done it on my own...... We are in a really good place right now. Let me know if you have any other questions.

Anyone have an link where Michael J. Fox admits to being bitten by a tick, having Lyme prior to his Parkinsons diagnosis????? If so, please share. Or any links with info from reliable media.

Only us parents can understand your pride and bragging!!!!! Glad to hear it!!!!! My kiddo 11yo dd.... hopefully follows the same path of success!!!! Sometimes I would trade top 1% nationally for math for her grade.......versus....for some sanity and an "average" or "normal" kiddo with our worst pandas kiddo. Still making headway.....but still scared to death of a major exacerbation. Thanks for sharing!!!!!

Librarian, Just seeing this from this past spring and summer. Might I ask where your are located??? What part of the country or state?? Also, correct blood tests and a competent doc can check for the right infections, vitamin and mineral deficiencies. From what I can tell, your on a decent path....figuring out food triggers.....etc,.....fish oil, nasal spray. My thoughts are that until you get to a Pandas doc and get comprehensive overview, your just using a garden hose on a house fire......if you will. Not criticizing.....just pointing out that our kiddos need a ton of help......I would say the worse the tics and sensory stuff is, the more comprehensive the approach needs to be. I have three kiddos....dd's. 1) oldest.....no issues from 0-8 years old.......summer 2011 strange strep and EBV reaction with severe anxiety, sep anxiety....would not could not go to school. 2) Middle....no issues till 2yr MMR adverse reaction(did not realize it) ...2-6yo---very Oppositional, food averse, anxiety, some unknown OCD, very aspergerish like. 6.5 years old...very bad post strep tic..asymptomatic for strep.....amox did not help, but PenVK did.....kept her on Pen till end of School year 2011. Late summer/fall very high mycoplasma titers coupled with ticcing and more severe tremors, and chorea like arm flapping......went mute two times.......truly scary what we were dealing with. 3) youngest---severe rages after 2 and 5yo MMR vax.......2012-13 started developing slight nose twitch tic similar to middle dd. Nipped it quick with previous kiddos protocols from DAN/Integrative Pedi. I say all this to say.....don't wait. Get good intervention sooner rather than later. The more you allow Pandas/Pans to dig the hole your in....the harder i think it is to get out. Every kiddo is a little different and their immune systems are too.......but they are similar. We are all dealing with slightly different situations.......but they are way too similar. I have had such a "good" mix of varying issues at different ages and varying severity of initial issues and subsequent exacerbations, that I feel like we have a good handle on things. Please pm me and we can discuss further if you would like.

thundersweet--------------PM'ing you.