WorriedDADNMOM

Ariel, 19 months is very young for Pandas Onset. At what age did your kiddo have the 15-18 month MMR???? Interesting article here. www.klaire.com/images/PANDAS.pdf And another venn diagram of the similarities of ASD and Pandas..... http://www.ageofautism.com/2011/11/autism-and-pandas-.html

I cannot stress enough about supplementation and probiotics as recommended by mommy2mcl. Debulking the infection is truly the best place to start......however, healing the body and immune system with vitamins and minerals, controlling inflammation, developing a sick protocol for other infections to boost the immune system, removing controllable triggers...foods or pet allergies.........All of this will be integral for optimum health.

I will say that our dd experienced painful urination before and during the initial stuff. We never tested for UTI, however, she was asymptomatic for Strep and had very high mycoplasma p titers.....so if an immune system is overwhelmed, it would make sense that a UTI could be another piece of the puzzle. So grateful that a leading doc is only two hours away in OHIO. Best of luck!!!!

The reason I asked about vaxxing was previous adverse reaction in other kids might indicate sensitivity to vaccinations/infections. Thus the reason why not vaxxed. We had adverse reaction to MMR in worst pandas/pans kiddo......other two kiddos.....1 adverse to 1st and 2nd mmr......other no reaction to vaccines, but horrible anxiety from EBV and strep co-infections. We use Klaire labs for probiotics(lactoprime plus) and sach b. I would be curious to know the rash on the face......is it around nose and mouth more than other areas??? Impetigo maybe??? From our experience, skin issues flared more and let down of mucous from sinuses more after treatment started with ABX. Let me know if you have any questions.

Vicki, best of luck and God Bless your and your kiddo. Sounds like your on a good path of figuring it out. If strep is an issue, prophylactic PenVK is a very safe option. I cannot stress enough about checking for other bacterial or viral infections.......EBV(mono) and Mycoplasma and some others. Immune dysregulation and some chroic infections are a pain, but it is manageable with abx if needed and a whole host of other supplements. If you need some help or guidance and our experience of our journey, feel free to PM me.

Few things: 1) why is your kiddo unvaxed? 2) Any behavioral stuff in the mix? Tantrums, crying spells for very small issues, Oppositional defiance???? 3) As for the ABX....i would try PENVK to start.....If the tics stop or slow down....Then Your on to something and pandas is a possibility. If Penicillin allergy is a problem....then for many here, Azithromycin(Zithromax) is a possible start. BUT, I would do probiotics and Sachromyces Boullardi in conjunction with the Zithromax. This will mitigate gut dysbiosis.

I'd like to echo nicklemamma.....My kiddos fully vaxed.....but if I had to do it again....spacing...splitting MMR...no flu etc......My dd's are 11,10 and 8.5......there will be a battle for middle school vaccines coming up. I will say I am not on the fence.....I have said before....vaccine induced ASD or PANDAS or PANS were not on my radar previous to 2010 and 2011. BUT when TWO docs....One ID and one PCP asked if our DD had adverse reaction to vaccines. It was at this point I started researching, reading and gathering enough info. The telling info was med records and the many calls in the day after and following to the Peds office complaining of unconsoled crying post 24month MMR. Seeing this in the med records 5 years later when PANDAS came up after the two docs had to ask us......I was livid.......and felt a sense of guilt.......That I did not do my homework. While I think there is an obvious genetic link to ASD, one cannot dismiss the vaccine link. The rapid ramp up in the amount of vaccines recommended and the "correlation" to ASD I think is troubling at the very least. I hear the "correlation does not equal causation" argument and the provax people say definitively that vaccines don't cause autism.....but they don't say what does. I think this is a telling dichotomy.....How can a person or persons say with 100% certainty that there is NO LINK but not even a little certainty what the cause might be......it is all unknown.....but suspected Genetics, environment etc......Last time I checked.....a jab in the arm with a needle would be considered an environmental exposure!!!!! I think it is all BS!!!

Anyone had this Biofilm test done on blood for Lyme??? Any feedback one way or the other???

Also, forgot to mention....family issue...waiting on Lyme Biofilm and Igenex....same issue with not a known tick bite....but actually taking tick to the doctors office. NOTHING DONE!!!!

We had the same response from ID doc about Pandas/Pans and a PCP........Strep and Mycoplasma. So we get it. I want to encourage you.....any payment, not paid by your insurance, that you are required to pay......just refuse to pay. Tell them the service and/or direction for healing was non existent.....so therefore......same with my portion of the payment. I know this MAY be an unpopular approach..........but at some point, docs will listen. We must be able to vote with our cash. And a non payment is a no confidence vote. If your not happy with a service, why pay. Also, many people are moving away from main stream docs for alternative meds and supplements. Not to mention organic foods. They will hopefully in my lifetime start getting it or they will face extinction. BTW---DON'T STOP ADVOCATING FOR YOUR KIDDOS or YOURSELVES!!!!!

Rifleshell----cool name!!!! No not crazy. I have three kiddos....all Pandas/Pans. One with known strep and EBV-----debilitating anxiety. One with adverse reactions to vaccine MMR(worst kiddo by far) the whole gammut...never a strep infection, but had impetigo.......everything you listed pretty much...tics, chorea, tremors and all the psych stuff. 3rd kiddo had reactions to MMR with explosive anger at 2-3 years old....then again after 5yr MMR. She started slight tic and we stopped it in it's tracks. With 3 kiddos, they all had variances and similarities. Same thing with their milk allergies......1) severe eczema 1) with projectile vomiting and 1) SEVERE colic. Different people, similar genetics, different immune reactions. Agreed, your doc that diagnosed and treated Pandas should be able to confirm.....also, by worst dd was totally asymptomatic for strep....no known infections. Slightest exposure.....tics can come back immediately.

This is a tough question. Our dd had classic tic of nose scruntch, forehead, grimace, eye roll all rolled into one. I would probably say it is not tic related, however, I am not an expert. Tics are more uncontrolled movements. That said, I would almost bet they are related to the whole host of issues our kiddos deal with. I would say, when do you rub your eyes????.......itchy or tired eyes. There may be other reasons. Google it.....there are some old posts from 2004 in ACN.

kt, care to share what ILADS doc you went to?? We have an appt for 8/22 for a relative? PM me as we also are in Ohio. Any suggestions on what to ask, say, communicate to the doc about Lyme???

Most of us here in the US are in the same boat. It is getting much better though. If you can consider self pay, there are some in Mich and Ohio that are VERY good (ours) or some that have been recommended. Best of luck. Let me know and I can PM you.

I want to 2nd what Nicklemama said......."You get what you pay for" and a little spin on it..."you don't get what you don't pay for" I told an ID doc to take roughly 800.00 worth of bills and "stick them anywhere the sun won't shine"....pretty much that way. I even told our initial pedi, whom charged me after insurance a 100.00 bill the same thing for telling my dd to put a smooth rock in her pocket to deal with the post strep and EBV anxiety. This is not health care as it should be. I have spent roughly 15k on a good doc for tests, visits, supplements with good results for three kiddos. I refused payment on about 1000.00 to docs who gave me NOTHING. You tell me where the value is. I have said this before, how can you put a value on your child being happy, healthy and thriving.......or even your family functioning well. Also, when we are not in control of the money(insurance co is) your not paying, so the docs are not beholden to you as a patient....but to the insurance company. Thus, you don't get the care you may need, want or deserve. SSS-----you have a good plan....my plan is 900.00 a month for as 12k deductible.....Gotta love and thank Obamacare!!!! 120% increase in monthly premium and 20% increase in deductible.However, If I were you.....refuse the payment for failure to render services. PIK-----unethical is allowing insurance companies and the govt to dictate and or deny care (think Justina Pelletier) that is deemed necessary by a doctor and a patient wanting it. I would argue these doctors helping our kiddos are far more reasonably priced than ones that are charging insurance companies 3 times that amount and settling on whatever they can get for poor/no service and poor health outcome. 4nikki------amen......If we won't fight for our selves and our kiddos, no one else will. pik, I know and feel your frustration. However, you really need to think about the hoarding of info. It is not the docs whom are treating pandas. Our DAN Integrative pedi has been very forthcoming and thorough. But our initial peds said......You gotta get all these specialist on board....I was not on board......I just wanted to try long term abx, as we had seen improvements on it. IMHO....your demonizing the wrong people... Finally........If and when we go to a single govt payer health system.....we will be in trouble. Then, you will have limited choices and I would think many of the alternative docs will be run out of business due to taxes being too high and not enough funds by regular folk to pay for their services........unless your uber wealthy....like congress or Hollywood......

pik---I am sorry for your experience. While I have no direct dealings with Dr T, he is an advocate for our Pandas kiddos and He has discussed pandas with our doc, whom is a good one. Many of these pandas friendly docs are just flat out overwhelmed right now. My doc, whom we see, took 2.5 or so days to respond to an email this week. 2011 it was within the same day or early next am. I would probably stand by our doc thru thick and thin no matter what......because he has been so good. Dr T....is a neurologist, but that is only a part of this battle. Really an Integrative Pedi or DAN are the only docs doc that can/are willing to attack this from an integrative, comprehensive manner.......but your situation may be a little different. Keep your head up and keep plugging away and advocating for your kiddos. However I might be able to help, please let me know. If you need anything, please pm me.

jsmom...PM'ing you now....look in upper right hand corner.

I don't know for sure. I am wondering too if it even makes sense that a PCP even knows WB. I am taking a family member to a LLMD at the end of August and am trying to get info from people/internet sources I trust. Here is a link that Dr Nancy Ohara talks about as specific lab and specific tests and why this lab is better. She starts at the 3:45 mark for this info. Hope this helps.

No known experience.....but, from what I understand, magnesium is needed for natural body detox and a whole host of other important processes......so it does not seem surprising with the high metals vs. low mag. After our issues started, DAN doc put our worst kiddo on high does Cal-Mag......calcium and magnesium. Again, we threw EVERYTHING into her to help her.....so I can't say what all has helped. But I have researched each supplement and why he might be giving it. We are in a good place. Try researching magnesium deficiency and see where that leads you....... Best of luck to you!!!!! Couple links to get you started: http://www.livestrong.com/article/278409-magnesium-deficiency-signs-symptoms/ http://www.greenmedinfo.com/blog/magnesium-deficiency-symptoms-and-diagnosis *see below quote from this article Magnesium is needed by every cell in the body including those of the brain. It is one of the most important minerals when considering supplementation because of its vital role in hundreds of enzyme systems and functions related to reactions in cell metabolism, as well as being essential for the synthesis of proteins, for the utilization of fats and carbohydrates. Magnesium is needed not only for the production of specific detoxification enzymes but is also important for energy production related to cell detoxification. A magnesium deficiency can affect virtually every system of the body.

Yes, glad to hear it!!!!!! Doc note for sure.

Speaking of this Bump..............anyone know of tenderness at tick bite some 3-4 years later????? Any indication one way or the other???? No bump by the way......just tenderness.

This is what our Integrative DAN Pedi does with us.........I would recommend a good QUALITY multivitamin that has plenty of Zinc, Vit C and Vitamin A amongst many other things. These would be in the multi vitamin. However, doing an increase "sick protocol" in these three during a sick period would help. I personally have started taking my kiddos daily vitamins and then taking zinc and vit c when I feel cold coming on. I can kick a virus in as little as 1-2 days feeling back to normal. We also used Lauricidin (monolaurin) for our kiddos and we have had a great two past winters. DAN is taking us off.........we shall see how they do. Still using Enhansa and Enhansa Repair.

Read some of it and downloaded it.......... way over my head. But get the Pandas/Pans stuff for sure. It is very interesting how we can find and get this info, but main stream docs can't or won't........shaking my head.

They are NOT the same thing........Correct from many though.The way our Integrative Pedi told us Probiotics promote healthy gut flora and can be taken all the time daily. It is especially important to take it when on abx, especially the broad spectrum, ex Zithromax it needs to be taken as many hours apart from the abx. Also, when on broad spectrum abx, yeast infections can become an issue and therefore Probiotics supplemented with Sacc B(which is a good yeast that can be take at the same time as abx) is a good plan to eliminate potential dysbiosis that can occur on long term broad spectrum abx. For what it is worth, we recommend really only what our Integrative DAN Pedi recommends: http://klaire.com/probiotics_cat.htm http://kirkmanlabs.com/CategoryKirkman/154/Probiotics/ Hope this helps!!!!

We can't really recommend specifically. Many times it is based on individual child's weight...... can they swallow pills....etc.... I would ask with ds7......any Pandas issues/symptoms or just normal infection stuff...fever/sore throat?.....Which would be a good thing.....however, left untreated.....could lead,I would think, to Pandas. I would maybe ask for longer zithromax. For us, Amox did nothing to clear the infections. We are sure of this in more than one kiddo and I recommend googling amoxicillin failure rate or something similar. Some interesting info.