WorriedDADNMOM

1) Do get a new doc.....you should not have to ask them to be professional and explain their position. I recommend a DAN pedi or Integrative pedi. 2) Quit paying his bills. Tell him "the bills are not open for debate" if you don't have a say or at the very least an explanation as to why his route is better...why yours is not. 3) As I understand it, it is the live vaccines that tend to be the ones that send our kiddos spiraling. My kiddos are 10/9/7 and the WILL NOT be getting any more. At least not until they are healthy with strong enough immune systems to withstand them. Which may be never. I don't know. 4) DO NOT STOP ADVOCATING FOR YOUR OWN KID. DO NOT LET DOCTORS USURP YOUR RIGHTS AND RESPONSIBILITIES AS IT PERTAINS TO YOUR KIDS HEALTH. I, like many parents, have been willing to sacrifice anything and everything, my reputation, my credit rating.....everything for the health of my kiddos and the functioning of my family. Keep your head up and keep fighting!!!

We use it for cooking. Good as a popcorn oil. For kids, we use Lauricidin. We noticed very limited amounts of viral infections in the kiddos this past winter/school year. We believe in it but more so the "all but the kitchen sink" approach to health as it pertains to vitamins, minerals, omegas etc......We were told strait teaspoon of coconut oil would suffice in place of the Lauricidin.

Tiny sent u a PM. Let .e know if you have any questions. You can also go back and read my old content.

Well my uneducated self asks this question then if brain infection is not the same as auto immunity as you all point out. It is still infection that is affecting the brain. What came first? 1) the infection 2) the auto immune response against the brain due to the specific pathogen 3) the immune dysregulation from previous entrenched infections that leads to the auto immunity. http://www.epidemicanswers.org/epidemic/biological-dysfunction/immune-dysregulation/# Quite honestly, I don't care about the specifics of where we are at in the pathogen/immune response cascade to full blown Pandas. Maybe I should, but I still think they are really one in the same at the end result of neurological inflammation resulting in the we all experience. Not trying to fight with the entire board, but I am trying to make the broader points and explain my rational (or irrational ) to all of this mess. Again, thanks to all the people continuing the dialog and helping all the Newbies.

MomWithOCDSon----First and foremost, no tomatoes here, for sure. This board literally was the first thing I found when I googled when my dd6 came down with tics and It has been a life saver. So thank YOU and EVERYONE for even giving a rip and posting on here and being a part of the dialog. The exchange of ideas, treatment, doc info, etc...... has been HUGE. We all have very different journys and history, .....My DD6 now 9.....She previously was bi-polarish, had unfounded irrational fears, sep anx, oppositionally defiant terribly and upon tics coming had suicidal thoughts just previous to the tics----all this b4 6yo. During subsequent exacerbation, it was truely scary. She was explosive in tantrums and I am sure she would have been dx an Aspie based on EVERY symptom that describes it. All this in a stable loving home that I am absolutely confident in. That being said, I read your comments in your profile to better understand your history. You and your story are quite different. With very little help early in the game and while I know little about OCD, I think I get how dispruptive to a familiy it could be. But I also understand, as do you, the lack of response from the med community. The point of my posts is to push a few ideas: 1) Even my own three biological kids with a milk allergy presented with three diff symptoms 1) Severe eczema 2) Projectile vomiting and mild colic 3) severe colic and inability to nurse. 2) The same would probably apply and it did in my case as it pertains to infections with known pathogens---ours were MP, Strep and EBV. All three kiddos had different responses and symptoms that varied. OCD was the least obvious although present, but not in all three. 3) I have my own familal history as it pertains to mental issues for the last 40+ years in addition to auto-immune issues. So the link between neuro-immune stuff for me is quite apparent and I get it. 4) Everyone has a very individual immune system and response and are exposed to varying infection and co-infections. 5) MAIN POINT---THE MEDICAL COMMUNITY SHOULD LOOK FIRST FOR INFECTIOUS TRIGGERS AND TREAT ACCORDINGLY upon ANY onset of ANY mental issues presentation. 6) MAIN POINT #2----WE AS INDIVIDUALS, FIGURE OUT OUR OWN FAMILY HISTORIES AND APPLY THE KNOWLEDGE AND ADVOCATE FOR OUR KIDS. So, I say all that to say, much the same as many people after Newtown,CT where the shooter was dx'd with Aspbergers, there needs to be a MAJOR redo on how we are addressing mental illness............in ANY form. The only "offense" taken(and I am thick skinned) is that we "should not lump Aspbergers with pandas pans or anything else". My problem with that is there are enough medical personell doing this and worse. Every mental diagnosis has so much strong overlap to other mental illness. They are these neat little checked boxes next to all the presentations and behaviors, thus, you have x,y or z, or many times, frigging ALL three!!!!! No biological or medical test done, just calling/naming the mental illness/deficit after it's symptoms or founder and giving a diagnosis.There are doctors on record that say pandas is not supported by enough data. That "How can we actually be serious about linking a sore throat with a mental issues like OCD or bad behavior. You know the answer as do I and probably everyone on here. But-----These types of willful disregard, for whatever reason, are not helpful to our kids, families and by extension the entire culture. So demanding that the stigma with mental illness be banished to the dust heap of history with a pragmatic, thoughtful bio-medical approach to mental and physical wellness is warranted. I don't know, maybe I am living a pipe dream.

Wombat, I assume you are talking about me and my reference to Aspbergers and Sociopathic behaviors. It is never irrelevant. Both are anti-social behaviors. It was not meant to insult, only to point out Pandas is primarily an early diagnosis before puberty. And if left untreated what might later happen with an individual. I would say violence during pandas exacerbation with a kid say under 10 yrs old would/could go under the radar and be quite different than say an episode of violence in someone going thru puberty or into early adulthood. The point I was trying to make is: If any mental disease or anti-social behavior is exhibited, a biomedical reason should be looked at----fast. First and foremost, bacterial or viral infections. Adam Lanza had a Aspie diagnosis..........what happened from ages 1 or 2 to 20 when he shot up his old school. That is the only parallel I was trying to draw. ***********Also, I would bet my life that I could have gotten an Aspie dx for my daughter from main stream docs. I was too ignorant what any form of ASD was. Looking back, I was probably living with it. But going to a DAN doc and with the treatment of infections and supplementation, my dd is thriving, is healthier and a ton happier. Is she perfect and not have any of the Aspie anti-social rigid, rituals and restricted intrest, no.....BUT she has improved a ton. So it is with great respect for you and no ill will or intentions were meant in the initial post or this one. I am sorry you felt cross.

I would point back to my original post. How do we know these are not brain infections???? If you google "brain infection", and just about every other type of viral or bacterial infection, there is so much overlap in so many diseases. Could this all be just one in the same ....... an individual immune response to different etiologies???. I think we do ourselves a disservice when we argue about the semantics and verbage and proof with "Science" of what is wrong. I think the med community does this quite frankly way too much already.....thus the situation pandas is in........... let alone EVERY OTHER mental diagnosis is not even talked about a viral or bacterial infection as a causative agent. Do I really care if Pandas is anti-basal ganglian antibodies attacking the brain and causing neurological inflammation or if it is chronic infection causing wide spread bodily infection? I am sorry, but I don't. I just want my kiddos well and to have the best chance to be healthy and succeed. Nothing more and definitely nothing less. I am not trying to argue, just saying we need to keep it simple and demand better care.

Mommybee, I would argue(that might be a strong word) that there are far more symptoms to Pandas than just tics and OCD as your post states above. Do the research. I also would contend that untreated severe cases of Pandas "could evolve" into Aspbergers diagnosis or even sociopathic behaviors later in life. Until we backwards in time study enough people like Adam Lanza or other sociopathic people, we can never know for sure. It is not a stretch to say that kids that have emotional issues by age 10, whatever they might be, WILL HAVE mental issues later in life without good and proper intervention.

Thought I would chime in........While I agree somewhat in part what you guys are saying about Beth not really knowing about violence associated with pandas and not being a medical doctor, I must disagree on other points quite firmly and make the main point I think needs to be made. We need to keep up the pressure on the medical community to start telling the truth and doing their "due diligence" with us on a case by case basis. 1) My kiddos all had different reactions to their milk allergy as kids. They are all same blood related----same two parents. 2) Despite this fact-- Their pandas onsets were all very dis-similar in initial onset. 3) In my kids' school(after learning about others kids and teachers issues) and people close our "CIRCLE" of friends and acquaintances., We have multiple people with different diagnoses. Tourettes, Pandas, Immune dysfunction, generalized anxiety disorder, tics, RA in their teacher------all this within the same 12-24 month time frame. While every kids journey with infections, Pandas,PANS,ASD,Tourettes,ADHD, Bi-Polar------you name it, are very dis-similar, as we are as people, very dis-similar yet very similar. We all have an immune system that will respond (or not), be overwhelmed and fail to respond and allow bacterial or viral infections to take root and reek havoc on our body and mind. Having these multiple assaults on the immune system at the same time are not good. In addition to being vaccinated. In addition to worsening diet and the list goes on.........and on. So the point is this-----I think it is as simple as-------Everyone's genetics imply how our immune systems will react to every bacterial and viral infection, everyone's bodies are different. We are, as a culture eating more and more crap. And we are vaccinating a ton more than when I was a kid. That being said........ Look at the Child Mind Institute and read all the causes of any of the disorders. They all say genetic and sometimes environmental. Yes, everything is genetic and we all live in the environment, but using the excuse that only genetics and "environment" cause LITERALLY EVERYTHING is disingenuous at the very least.......There are specific things to look for with the onset of any symptom. Until the medical community "grows a pair" and starts treating people like adults and starts saying what the truth is, we will be stuck and quite frankly sick......both physically and mentally until this change happens. Until people can be educated and understand what their family history is and how and why they have gotten sick, one can then take pro-active approaches. I am not a doctor, nor am I really that smart, but I know the truth when I see it and it is not being told to us by main stream physicians. I have leaned heavily on our DAN Integrative Ped. I like his thorough and practical approach. 1) Look for and debulk infections 2) Eliminate triggers to the immune system 3) Supplement vitamins and minerals lacking in body to promote optimum bodily/immune performance. 4 Implement sick protocol on how to deal with future infections. With three kiddos with Pandas or Pans or Tics emotional lability or bi-polar or whatever you might want to call it, I refuse to stay stupid and not try to intervene. I know what our genetics might be as it regards to mental or auto-immune issues and If I can do something, I am gonna try. Sorry for the rant, but I think Beth is more where I am at......... Keeping up the pressure on the medical community to address biological reasons why mental illness might exist and educate and provide options.

Hi all!!!! We are from Toledo. We traveled to Dr. Allen Lewis in Gahanna,OH near Columbus. I recommend him highly. Let us know if you need anything else or questions answered.

Belky, welcome!!!! You are in the right place. For us, after starting DAN protocol for tics, behavioral and neuro-psych stuff, in every way, shape and form our dd improved. So when you say it does not interfere with their life, there may be more that you are not seeing--------just my opinion. We truely felt horrible for our ignorance regarding all our dd's issues. It was not until the tic and other movements came that we began to dig in and try to understand our dd with regard to all her issues-----both physically, emotionally and mentally. Like we said, so many things improved....things we did not even see until she started improvement. I can't reccommend anyone in your area, but I found this doc on this site and his overall approach is similar to our DAN doc. Comprehensive overview of the body------1) Eliminate infections 2) Eliminate immune triggers ----allergies to foods,pets, etc....3) Supplement vitamins and minerals where lacking. 4) Supplement vitamins and minerals and other antivirals during infections to both bacteria and viruses. http://www.drkendalstewart.com/ Hope this helps.

I would say cold sore from herpes virus but not sure. Impetigo is usually several round blisters around nose, lips and chin areas.

I would add that our dd....worst of our 3 with pandas/pans stopped talking during the height of our road to diagnosis. Two times stopped talking for 2.5hrs once then became extremely hyper then started talking in high pitched squeeky voice and another time for about an hour. It was truely scary after the tics and other neuro psych stuff. Abx and DAN protocol have been tremendous and it has not been back since. Still some underlying issues where CBT might help. But all in all we are in a good place.

I would echo that augmentin might not be enough. Azithomycin for us since we had strep and Mycoplasma high titers. I would think a good probiotic would be beneficial with any long term abx.

From my understanding, which is basic, it is a natural anti-inflammatory, anti-oxidant and promotes detox. My kiddos started this post Pandas/Pans diagnosis. Due to family history of inflammatory diseases.....arthitis, ulcerative colitis, mental disease, alzheimers and cancers, etc.......... I am 40ish and I started taking it when I came down with what I think is infectious arthritis in both thumb joints at the wrist. My understanding is this can be caused from bacterial or viral infections and initiates an immune response, thus causing inflammation and joint damage. (other family has this same artheritis) I have never had this in my life before and I am active. Inflammation after workout or sports or injury is one thing. This was an entirely different inflammation. Very concentrated and very painful. I started an off brand of curcumin. It is not like advil where you get pain relief fairly quickly. For me, I noticed an overall bodywide lowering of inflammation in neck, knees, back and especially my thumbs. I noticed that after basketball or whatever, the overall feeling was that I did not hurt as much. There was also quicker recovery and not a need for as much advil. Granted, it is very subtle for me and I am taking 1200mg per day of the cheap stuff. My kiddos all get 600 mg per day. Honestly, I don't know how much it is helping. What I do know, is that I have started many of the same supps that the DAN prescribed, and I feel better both physically and mentally and I kick colds better. Probitics, Fish Oil, curcumin, anti-histamines, vitamins and minerals..................., zinc and vit C upon illness. Additionally, I have other family members with similar issues that have been taking vitamins and minerals for years. They swear by them. I do too now.

Dandilion, I can feel your angst. We were in the same place-----------almost exactly. Impetigo(that took long to subside sounds like your case too), subsequent infections, behavioral and sensory issues(sound, light, touch------wetness after urination is a big one. pain during urination-----suspected infection, never confirmed.) My gut on the amox is that it might help some, but really for us was two or three rounds of 30 day Zithromax. We are in a pretty good place right now. As far as moving forward, here is what I recommend: 1) Arm your self with info.....this board and anything you can find about Strep, Mycoplasma P.,various infections both Bacterial and Viral and how they relate to behavior in kids. Impetigo too. 2) Get to a Integrative Ped or DAN Ped or some other Pandas Doc that will first and formost believe your story and know what you are talking about. As far as "Generally healthy" goes......for us we were the same. But as we learned more, we started documenting. Never any fever, just behavioral stuff coupled with low grade fever----99-99.5 almost all the time. Nearly every day or other day for many weeks. It was so bad with our dd that she had two separate issues during the bad time, just prior to DAN protocol, where she stopped talking for 2.5 hrs once and 1 hour on another occasion. This after tics, behavior, emotional labiltiy, dark thoughts, irrational fears and all the sensory and ocd stuff......enough was enough. Our DD was 6 when the tic came and we were clued in. But it had been going on for far too long. I think the body has a way of telling us stuff is wrong-----ie pain or wetness with urination, sensory......etc...... We as parents don't quite understand it all, but when it gets so bad, your forced to look into what is going on and the past and you find it is all linked. If you need more info, you can PM me and I can get into specifics. The fact that you are here and have found ACN is a good thing and a step in the right direction.

MissMom.......I think you can expect anxiety and sep anxiety with EBV......also almost like depression but different....absolutely zero, nada energy......which was our major with oldest dd9 year or so ago. I second the Monolaurin or Lauricidin as an antiviral. We have been decent this winter with colds and infections. Middle dd8 who has been much worse with Pandas for a long time is also on it. She had the flu or some other virus twice....we think with high fevers. 102-103. I know this sounds bad, but we do not treat with Advil during these types of viral fevers. We have just seen them do too much good with "resetting" the immune response and clearing out anything that might be lingering. These two fevers this winter have been great for her and she has recovered much faster on the DAN protocol along with letting the fevers run their course. We just keep her pumped with fluids, soup or whatever. All in all 15 months post DAN treatment start up......we are happy where we are at. PM if you questions.

Thought I would chime in. We have not done any SSRI drugs. We got right to a DAN doc. He has treated the infections, then via blood and urine tests treated vitamin and mineral deficiencies. Then doing all natural supplements for inflammation control, antivirals and Pyrrole disorder which from what I understand can be similar to Bi-Polar. We have been very happy with the all natural approach. I think it is more expensive and harder to actually perform daily, but it and all the info regarding the supplements is all very simple. All our kiddos are young and have not seen any hormonal stuff go on------YET. If anyone wants specifics, please PM us.

Another good informative doc to listen to. Hope this all helps set you on a path to healing and functioning well!!!!!!

Hi Racie welcome! I am sure others will comment. It can and does get better. Keep your head up and keep informing yourself. Keep being a good advocate for your kiddos. For us and many, I "think" a severe strain of strep has been going around. We have had multiple kids close to us come up with Pandas,Pans,tics, anxiety,rage, adhd etc.......the whole pandas picture. Here is a synopsis of our journey that resembles fairly closely others I think. 1) De-bulk any infections that may be lingering or chronic. Long(er) term than normal abx. Zithromax for us. Helps chill out the immune system. 2) Remove any immune/allergy triggers........GF/CF, cats etc....... More immune chilling out. 3) Treat any underlying vitamin and mineral deficiencies. Helps restrengthen body and immune system to be able to deal with future viral and bacterial infections. My recommendation would be to get to a Integrative Pedi or DAN pedi. Regular Pedis did nothing for our DD's. Here are some links. They are worth watching. Video of DAN doc talking about Autism Pandas Immune function and other stuff. One of our first ah-ha moments http://www.integrativepediatricsofohio.com/resources/dr-lewis-videos/ Our doc we ended up finding and going to who has really helped. PM me if you have any questions or need anything. Next post will have some more links.

I would google Rheumatoid and Infectious arthritis. I know I had a minor bout with Rheumatoid Arthritis as both thumb joints at the wrist were very sore--------to the point of not being able to move thumbs-----it was something I had never experienced. I could tell my immune system was fighting something. I know if it is extreme, the hands and fingers can become disfigured due to the chronic inflammation with in the joint. My pandas dd teacher had this around the same time as everyone else that I know was experiencing "weird" stuff. As for the science, the way I understand it is that your body is having an immune response to bacteria or virus and it ends up attacking ones self or certain tissues with in the body.-----IE heart valves, joints or in Pandas the Basal Ganglia. I think strep titers would help in knowing for sure what kinda immune responses you are having. As for preventative maintenance, I take zinc and vit c for immune support during illness. I also take curcumin/tumeric twice daily supplement. I found after starting it, the inflammation subsided. DAN doc put our kids on Enhansa for Pandas. I also take a good multi vitamin and other supps for various thing. After seeing how the DAN protocol for my kids helped them, I have started diligently also. Just not the high cost stuff they are taking.

I know this sounds bad, but I just refused to pay the doctors for their time. If they did nothing they got nothing. I just pressed on to the doc that would help. Have gotten help and 15 months in and alot more money spent than the orginal non payment money, we are in a flare and still in a decent place. Point being, don't feel bad about advocating for your kiddos. Don't feel bad about not paying for crappy service. Only govt, lawyers and doctors can provide crappy service you still have to pay. Not me. No more. Sorry for the rant but if we all push back that is what will chang the way the medical community will treat our kids.

I also concur this is the same with my dd8 who had tic after strep. Seems as if everything were very weird. My dd would put tp in her underwear since it was wet after using bathroom. I have heard Dr T say in a video about ASD and girls with this "sensory" issue. For us, de-bulking infections with abx then DAN protocol has worked well for us. Some use DAN some traditional steroids and such-----kinda preference. The fact of getting a Pedi to actually do something is a start. Good luck and if you need any questions answered, PM us.

For us the tic came on very suddenly. Prior were all the behavioral neuro-psych stuff in the weeks and months prior. So yes, the tic can suddenly appear. We are having a decent time after one+ year of DAN protocol healing the body. As for tests, complete strep titer would be a good place to start. Also for us, mycoplasma IGG and IGM would also be good. I am sure others will chime in with other blood work at the same time to prevent additional draws, which for some of us can be quite difficult. Let me know if you need anything else.

Sounds all too familiar-----MadisMom----PM me if you want. For us, Strep has in the past couple years been a severe strain or something.Between 2010 fall thru Fall of 2011------------1) one DD with severe tics post strep infection, tremors ect.. 2) Other dd with severe anxiety post strep. 3) Teacher in first DD class that year with RA 4) 2-3 other kids in same class with immune issues, glomerulonephritis, knee pain not being able to walk. Google DAN doctors near your location. Many of the peds in NW Ohio where we are at were no help. If you need anything else, please let me know.