WorriedDADNMOM

I think monitoring for the red bulls eye would be an obvious start.....but many times you don't even get the rash according to what I have read. I would say a cost benefit/risk analysis would be in order: 1) 2-4 weeks Doxy as a preventative just in case with probiotics and their associated cost monetarily and risks physically VS. Do nothing and have it/get it and deal with the long term issues and costs both monetarily and physically. I know where I would fall......however, try and get an Ilads phone consult.....one close to your area.

4nikki.....I agree the short answer is yes. I really hope I am not reading the post wrong as to who your are sarcastic about......Pandas docs, Insurance co's, or whoever......If I am.....I truly am sorry, but I had to chime in. (If I am reading your post correctly-----sorry in advance if I am not) I strongly disagree with the sarcasm. It is about money to some extent........but, I would venture to say many of the Pandas docs, for many reasons, including ones you listed, are why they don't take insurance.....including limited treatments and not being able to get reimbursed for services or tests or treatments. Many, if not most give a rip about our kiddos and to a slightly lesser extent, our families. Pandas, Autism, Pans and the whole alphabet soup diagnosis, can be very difficult on a child and family. Any treatment outside the, what I call, "lame stream' medicine is "oh so bad......not standard protocol" So much is dictated by the govt thru regulation, the CDC, AMA, AAP and then Medicare. We are slowly being corralled into a single payer system with "standard treatments" where we won't have any choice whatsoever on varying treatments or alternative/natural medicines. The un-Holy alliance with Big Govt, Big Pharma, AMA,AAP ect will limit and hurt the ones that need the most intervention. I tried with regular docs with my Pandas/Pans kiddos to try and get help. We were desperate, as we had behaviors, tics, movements, neurological stuff, psychological stuff.......the whole gamut. I refused to pay two bills where I got jack**** out of the visits and got no help.......whatsoever.......just a "put her on an SSRI" from some young punk Pedi that did not know "jack****. But I went to a DAN/Integrative doc before he became a"Leading Pandas Doc" and spent 4 hours on our first visit, got the help we needed and have paid a ton of money for visits, abx, supplements, testing etc....... You tell me.....few hundred bucks for nothing.......VS.....15k over a few years for attentive doc and staff, treatment, help and valuable info to help manage the situation and future infections and exacerbation's. For us, there was not a price tag I could put on my daughter being happy, healthy....... all that she could be.........let alone..........my family functioning optimally. I know some on this board are not as fortunate to have the ability/resources to get to a good doc. But I had to comment that I think it is more the insurance companies and their alignment with big govt that are allowing our kiddos to fall through the cracks in our system.

For us, our worst (middle) Pandas/Pans kiddo had adverse reaction to 1st MMR. This is when the uncontrolled crying started. It was almost as if things changed. From 2-5 she became very afraid irrationally about Santa, costumes, clowns, etc......As she matured, she became very ODD.....early on it was food aversion and just oppositional about just about anything. This went on from 2-6yo when some OCD that we did not realize....what 6 yo could walk down the stairs skipping a step and adding 6 to every step....6-12-18-24..etc...Then she was able to tell us about why all the Bath and Bodyworks soap was going missing. We still don't believe it, but it was very hard to get into her head....still is today. There was NO WAY to bribe, manipulate, entice, barter, dictate.....literally nothing worked. For food issues, chores, cleaning, literally everything. Time management was also a huge issue. For us there was never any empathy for others.......almost always self centered. This was just the behavior stuff. Not even talking about tics, uncontrolled movements and psychological stuff. Oldest dd got Pandas/Pans with severe fatigue from Strep and EBV....she became very anxious, sep anxiety....very strange but after about 6 months we nipped it quick compared to middle dd. She did not have any issues with ODD to any major extent. Youngest dd definitely MMR 1 and MMR 2 reactions. Again, very minor OCD with more major ODD. Hers was more outbursts of anger and you could not rationalize or negotiate during those issues. Again we dealt with it from 2-5 then after 5 yo MMR2 we noticed slight tic (similar to middle DD) and again we nipped it very quickly. Beerae22.....you are so right about nothing working. For us, the diagnosis of pyrrole disorder was huge in terms of stress management. Debulking the infection with ABX and then supplementation of vitamins minerals and mood stabilizers and enahancers....all have been very key. For Middle dd, she has blossomed into a beautiful 10yo. Still have issues? Absolutely......but she is so much happier, healthier, playful, social, capable with dealing with stress, conflict and problem solving or decision making....... you name it.......improved in every single area. Hope this helps!!!! Thank you to everyone on this board!!!!! It truly has been a road map, and source of info and encouragement.

Hello all!!!! I really need some help with any Lyme knowledgeable people. I have a family member that I suspect Lyme...looking for input. Male mid 70's with known tic bite....4-5 years back. Took tick to doctors office....nothing done. Fast forward 3-4 years. Known issues...heart issues from previous MI, .......breathing issues diagnoses(pulmonary fibrosis), diagnosed peripheral neuropathy coupled with numbness and tingling. Had known hot knee and swelling one time. Caridiac CRP (inflammation) was thru the roof on a previous blood test. Known poor energy and fatigue, known lack of motivation(not depression). This is all very contrary to previous lifestyle. Granted, he is getting older, but the MI that he had he rebounded quickly. He has seen reg docs but Lyme has never been pursued. He did do 14 days doxy at my recommendation. He is now on an immune suppressant. Does this sound like lyme?? IIf so it is probably late stage lyme, is it even treatable at this age?? This board has been a huge help for my Pandas Kiddos. Please provide any recommended LLMD docs, protocols, input.......really anything you have regarding Lyme. Sorry....should have been more specific....LLMD in Ohio or Michigan. Thanks again for all the posters here!!!!!!!

In a word Yes.....I would bypass any ped that is not Pandas knowledgeable. Get to one or a DAN or Integrative pedi that is Pandas/Pans Literate. You will save time, headache get early treatment. I can say for us, we went 9 months trying to "convince" our pedi, then another pedi and it was all a waste of time. We happen to be 2-5 hours from a really good doc in Columbus,OH area. We are in a good place right now. PM me if you need other info.

Many of the DAN docs are Pandas friendly and "get it" and are capable of treating. You might try there as well.

genevieve81...welcome!!!! Your story for many of us is all too familiar. For us, we had the gamut of Pandas/Pans...again way too similar to your story. However there is hope. For us and the neuro stuff, mycoplasma titers----IGM were thru the roof. So this might be something to look at. I also recommend getting to a DAN/Pandas/Pans doctor. For us, long term zithromax was huge, but we also do a ton of supplementation too. If you want to PM me for more info, please do so. Keep posting, asking questions and learning. It can and does get better with good interventions.

For us, in the preceding weeks/months(9 months running) before the proverbial excrement hit the fan, we were having, constant low grade fevers, neurological issues, psychological issues, tics, uncontrolled arm movements, head bobbing tremor or something like that. Initially it was the tics and psychological stuff, then several months later it was all the stuff listed above combined. Very scary for us. For us, once we started the long term abx, we noticed a more normal responses to sickness. Example, our dd had very high response to cat allergy according to blood work, but never really itchy eyes or post nasal drip. Once we started zithromax, a few weeks in, there was a good amount of mucous let down out of her nose and sinuses. For us, it has seemed as if there is a more normal response......albeit small. Seems as if our kiddos exacerbate "Pandas style" as opposed to get sick in the normal sense. The exacerbation's have been smaller and less drawn out. But we are also doing a whole bunch of supplementation too. We(I) am are beginning to feel as if another round may be beneficial. We are dealing with exposure to Whooping cough(earlier posting of mine). Same kinda low grade fever and behavior stuff coming out in worst Pandas/Pans kiddo. Hope this helps.

Great stories and inputs. Our kiddos were exposed from a cousin that is immune compromised due to Leukemia/Chemo and bone marrow transplant. No re-vaccination yet. It took 4 weeks for them (best docs) to diagnose it. Go figure. Our dd has been complaining of stomach muscles hurting from coughing so much.....things are improving, so I am not really concerned at this point. I appreciate this board, the parents who give a rip and all the input!!!!!! Thanks again!!!!

I just love this board. I did already call pedi and she was gonna give 5 days Zithromax.....asking for 10. Also asked for all kiddos to be put on it. We will see if she complies with my request. Thanks for the response(s) if others will chime in!!!!!!

Anyone have any experience with Whooping Cough exposure/infection in their Pandas/Pans kids????? We have 3 kiddos exposed to a cousin that is confirmed infected. One dd is severely coughing as of late and she is vaccinated prior. She is 8yso. Just trying to figure out a protocol if any, things we can do to mitigate it, things/complications to look for if any. Any help would be appreciated!!!

Sending PM...look in upper right corner.

Sending a PM.....too.

I am sorry for all the job changes.....I am opposite...very steady work/job history for 12 years, basically self employed and can/have to track this stuff year over year......Before Obamacare, my annual out of pocket was 13444 in 2008-2009 14800/year or less in 2010-13.....now it is 22320/year with no added benefits that I can use.....NONE. The point I am making is we in the Pandas/Pans/ASD world should be shouting from the rooftops. We, like you pay out of pocket of HSA contributions for DAN/Integrative ped. Now the extra 7500 per year will really squeeze our ability to pay for treatments we deem as helpful or our supplements our doc writes prescriptions for. Many, if not most on this board, have had to fight tooth and nail to get the treatment protocols necessary for healing and wellness. When the "lamestream" docs have refused, we have had to seek out "out of network" DAN docs, naturopaths, neurologists like Dr T doing their own thing and not a part of big group or big biz, pharma, insurance, Govt alliance. I am sorry, but costs will not go down. I just don't see where it will happen. You don't keep delaying something that will save you/us/everyone $. http://www.cnbc.com/id/101393331

Julia, while I don't know your specific situation......Obama care was passed in 2009 but not fully implemented till 2014......so I am not sure how you have had Obama care and Job insurance and the rate increases could not be happening simultaneously. While you may(or people you know) have a subsidized plan now, that is great and I am in favor of a solution, but why does there need to be a one size fits all approach. This could have been targeted with tax credits, subsidies,.........anything else to help people in need that WANT insurance. One size fits all approaches do not work in the long term. This is common sense. Look at the problems with the vaccine schedule and it's one size fits all approach. Why do I need Autism treatment or maternity??? Why does a single male need maternity??? This this was designed to railroad us over time into a single payer system. Then WE WILL BE SOL. The costs(mine and most peoples costs) have increased DUE to Obamacare and it's unneeded mandates. I have had 5-15% increases over the years from time to time.....but never have I had the costs increase like with the implementation of Obamacare........100-150% and I am in the individual market. You mark my words.......in 6-12 months when the employer sponsored plans start to be hit with these types of increases, this will only get worse. Maybe I am wrong, but you think employers will not start dumping employees or dumping employees health care at a bare minimum?????? We shall see.

While this might be a little off topic, I think it lines up perfectly with what your first paragraph states............I think it is very sad where we are at currently and where we are going will only make it worse. Obamacare is and will be the undoing of our medical system. We are on a individual plan, HDHP HSA which have been hit with 100% premium increase just this year.......from 287 per month in 2009 for a 10k deductible, 400 per month in 2012-13 for a 12k family deductible to 860.00 per month in 2014 on an ACA plan for that same 12k deductible. We have used this HDHP to be able to pay for supplements that have radically improved our kiddos health. Right now, this is in jeopardy if we cannot find some cheaper plan that gives us the flex to be able to go to a DAN doc if we want or buy supplements or any other govt or insurance company "unapproved" therapies. He who controls the purse strings controls everything. Slowly we self payer advocates for our kiddos are being squeezed out. Big biz lines up with big govt and we are all screwed.......pardon the french. Thank God for all the independent DAN's, Pedi's and other Pandas docs that are helping our kiddos. Sorry for the rant!!

Absolutely don't give up. It is not foolish and many of us on here completely understand the shear hopelessness one might feel regarding Pandas/Pans. However, your child can and will get better. Keep fighting and get a good Pandas/Pans doc on board. The fact that she is still in school and has friends are very good signs. We worry everyday...and with each strep encounter and flare, however small it may be, we wonder when it will be IF and WHEN we will be past this. It is a crappy hand to be dealt for sure, but I refuse, as long I have money to pay for supplements, and not have to go the mainstream route with docs, I feel like we can manage it.

Sending PM with info. http://pandasnetwork.org/resources/providers/provider-list/

How long on the augmentin?? Have you tried zithromax??I would suggest trying to control inflammation. Also, I encourage you in your fight to get better. For us and our dd's, we had the gambit.......adverse reactions to vaccines, strep, mycoplasma, EBV.....so we really with the help of a DAN in Gahanna, OH threw everything at the situation.....except abx, all natural supplements to boost immune system, protect against bacterial and viral infections, control inflammation, eliminate known triggers to immune system(cats and milk allergies).....you name it, we were gonna do it.....but it was all at the direction of the DAN/Integrative Pedi. Maybe you could reach out to some Pandas doc via at least a phone consult if you cannot find one close.

Cara, not sure if you are weaning or just stopping??? For us zithromax supposedly has immune modulating properties. Therefore the integrative pedi that we use did a few 30 stints of daily zithromax....then transitioned to a MWF weening period for a good amount of time also. Kinda similar to Prednisone, but not exact.....same kinda idea.

Cara, we have been using enhansa for a couple years now. Definitely better behaviors on as opposed to off. Ours is 600mg one time per day. For us Strep titers were always low or negative. But we did have low positive with neg culture swabs. We did however find out several months later after blood draw about Mycoplasma titers being extremely high coupled with the worst onslaught of neurological and psychological issues. The doc never told us and we struggled all summer. I only say that to encourage you to investigate other infections that could be triggering your kiddos issues. In addition there are many supplements to boost immune system. Also during exacerbations, if your pedi would try it, combo abx.......We are on PenVK prophylaxis coupled with the rare, albeit occasional, zithromax.

I agree with quannie and eamom. Since our Pandas/Pans kiddos are all different....targeting the exact infection(s) will be a "key first step", however it is a very multi layered approach. You must get a Pandas doc to do blood test to determine what infections both bacterial and viral could be a part of the picture. My gut would be that there is more than one thing going on contributing to your kiddos issues. As for your last question, for us, we still see flares. However, we are much more in tune with behaviors. We, with our dd, can predict someone close to us being diagnosed with Strep even before that person gets a swab. On a good note, we are armed with a plan of current management (improving immune health, reducing inflammation, vitmamin and mineral supplements) and flare management (sick protocol) that severely reduces the drastic drop off and quicker rise back to "normal". Take it one day at a time and keep asking questions......there are lots of helpful people with tons of knowledge.

Your story sounds all too similar. Any tics or anxieties??? I too, suggest trying to find a Pandas specialist by going to -------- http://pandasnetwork.org/resources/providers/ Most, I think, would be willing to help....especially if you have documented exacerbation and have the link to infections. They will be able to do a comprehensive overview of you and your history and do what you need. Document as much as you can remember and more current stuff. For us strep and Mycoplasma were issues. 2-3 30day stints on Azithromycin then several months of MWF Azith to debulk the infections and chill the immune system out. We also are on prophylactic PenVK which has been a huge help. Let me know if you have any questions. There is a wealth of knowledge on this forum........Welcome and good luck!!!!!

Concerned and Mrs_T06......here is a link that might help. Contact me if you need anything else....I am in OHIO http://pandasnetwork.org/resources/providers/

qannie and 3bmom.......your kiddos sound exactly like my dd. No way to manipulate, discipline, entice, bribe......nothing and I mean nothing worked. I love the "God himself could not manipulate" quote is SO true.