WorriedDADNMOM

Jennifer, I can honestly say I don't know. We were in a critical state with one kiddo for a few years and did not know really. Many behavioral things...... ODD, sensory issues, anxiety, fears, ADHD, anger and communication issues.... many of the ASD or at least aspbergers symptoms....never did we realize it....or get a diagnosis...you name it and we had it. Just thought it was our kiddo being our kiddo. Never did we realize ASD or Pandas could be possible...we were ignorant just trying to juggle 3 kids under 3-4 yrs old. However when a known strep issue arose in the classroom for middle dd and she was diagnosed with a post strep tic... then oldest dd came down with huge anxiety post strep and EBV.......things started making sense......right after Zithromax.......and then especially after starting treatment and getting DAN doc on board. That said, I think the whole comprehensive approach is really the key to healing the body. The DAN doc really did everything.....all natural supplements and the behaviors have really waned......never really realized she had ADHD during homework....again we were ignorant. I just think that everyone's journey is so different and everyone here has a lot of good ideas/info. But I don't feel there is one magic bullet if you will. The Lauricidin should help with future viral infections and help the immune system chill out......so it definitely could improve behaviors. We just chose the route of allowing someone else (DAN Doc) to target what he thought would be the best things to do. The improved behaviors were really a pleasant surprise afterwards since we really did not realize just how bad she was. Best of luck to you!!!!

I would agree. My worst dd Pandas/Pans was very ODD for quite a few years before tic onset that brought us to Pandas diagnosis. She had unfounded fears, ODD, ADHD, very aspbergerish looking back.....but we had not a clue.....just our kiddo being herself.....needless to say it was very tough. For us this dd had adverse reaction back at 2 year MMR and we never made the connection till Pandas journey 3-4 years later when two docs asked about adverse reactions. Then the tic came out of nowhere, then more neurological choreaform movements, going mute....truly scary. After pandas treatment every thing is doing well. Other two dd's were different.......1 with strep and EBV became an anxious kid....like a light bulb on then off kinda reaction after treatment. 3rd dd became very ODD after 5yr MMR and possible strep infection at about 7 developed very minor nose twitch tic that we stopped in it's tracks.....had been down this road before. Anyway, all three of our biological dd's presented very differently to vaccines and infections.....and at varying times and ages. In addition our kiddos all had milk issues as babies....again all three presenting differently.....oldest with eczema, middle with projectile vomiting and youngest with severe colic. So yes, I encourage you to go down this road and investigate.

I would add that this past winter is the first out of 3 years since diagnosis. Our Integrative ped put our worst pandas dd on PenVK prophylaxis. We have done very well on it. It would be the same/similar protocol for someone that has rheumatic fever with heart inflammation. PenVK is not as tough as zithromax but for us it has been effective in mitigating tics and behaviors. Withing the last week or so, we have noticed very minor ticcing.......next day neighborhood friend says she is not feeling good...mom calls day later to confirm strep. So our dd is like a barometer, if you will, when strep is in the house.......and I am quite vigilant and aware of what is going on with her. The fall off is not nearly as bad as previous exacerbations......much shallower fall and quicker recovery......as least so far. Still monitoring it this week. I'll second quannie........We are also on Enhasa and a host of other stuff......let me know if you have any other questions.

We use Lauricidin as antiviral....heard coconut oil can do the same as it is a deriviative.....However both can cause loose BM's...so it is best to start slow. I don't think they have the same effect as regular abx, esp broad spectrum abx such as zithromax, as it pertains to killing good gut bacteria. Worst Pandas kiddo is on PenVK due to tics at strep exposure and really sensitive to strep when it is in the home or school. We continue with probiotics daily and only add sacchromyces boullardi when we have to use zithromax. I am not sure how much it helps. I will say it...or the whole cocktail of natural stuff we do, this was the best year we had house wide pushing back on EBV, Strep, Myco and colds and all the behaviors. Additionally....... We do have a sick protocol when colds come with Zinc and Vit C and we(I) really see value in these cheap supplements when colds come. I personally kick colds in less than 2-3 days if I hit it early with Zinc anc Vit C. Kids also take vit A drops during the sick protocol. Let me know if you have any questions. Hope this helps!!!!

Thanks Ashley!!!

The Sun is Rising by Britt Nicole https://www.youtube.com/watch?v=01bj1SiQEzw#aid=P8BcFG4uEAw

I just wanted to offer a bit of hope for all the newbies and people in flare/exacerbation. As one of the few dads on here, this below linked song and the song "Stand" from Rascal Flatts have really encouraged me and my wife to keep pressing on.....especially in the midst of flares and the ups and downs. I just think there are many of us who many times don't have family or friends that get it....The worry, stress and battle to help our kiddos is taxing to say the least. For us, we are doing well...not perfect but the hope is there and we want to make sure everyone understands that there are people in your situation(s), we get it and just want to encourage you to not give up. This board especially and all the Pandas websites have just been phenomenal resources and encouragements to point us to people that can help. So Thank you all for contributing!!!!!!! "> ------------------The Sun is Rising --------------------Rascal Flatts

Yep, no symptoms with Strep or Mycoplasma P. I can say there was as "letting down" of mucous after being on zithromax for a couple weeks. Not sure where it came from. But neuro-psychiatirc stuff with low grade fevers...always less than 99.5. Had IgM and IGG titers when this whole adventure started. No symptoms....however titers for acute IgM were 5.9 H with pos being greater than 0.9.....guess what the H stands for?????

Ashley, where can the NE Conference videos be found.

I would echo smartyjones' comments about regular peds' vs Pandas/Integrative/DAN docs. Regular peds either can't, won't or don't want to "mess" with pandas kiddos. If you can get a regular ped to give abx and you see improvement in behaviors.....then your on to something and this is one of the early "pieces of the puzzle". While every ones situations are different, there needs to be a very comprehensive overview of your kiddos behaviors, infections, blood and maybe stool samples looking for all the various infections, deficiencies, imbalances....etc. I am in Ohio and we see Dr Allen Lewis in Columbus,OH....he is on the Pandas Network "leading doctor" page. He has a son with ASD is very thorough, understanding and compassionate. I recommend going to his website as it has a ton of info and videos. IM if you need any other info.

For what this is worth....do EVERYTHING you can to get your kiddo well. ABX is a start for Strep....but much more can be done with vitamins, minerals, boosting the immune system and natural mood adjustments and dealing with future infections. DAN protocol has worked quite well for our Kiddos. For us..... this "healing" approach......first... then many of the behavior stuff, anxiety and ADHD, sensory stuff faded greatly initially and more and more subtlety over time. There really has been constant improvement. Our kiddos have never been on anything other than natural supplements except abx for acute infections. For everyone, keep fighting and advocating for your kiddos. It can does and will get better.

Our dd had tics and involuntary movements and tremors prior to getting help. This was coupled with behavioral changes. I agree with Pilbara and the book reference regarding adding what is needed and removing potential triggers. I have a Columbus,OH Doc I highly recommend that will do the whole gammut of testing and very comprehensive overview of your childs health and history. He is a DAN certified doc who starts with the natural treatments first. PM me if you want more info or docs name.

I have not been on here much lately, but we have seen a great improvment with PenVK prophylaxis since start of the School year. Back in Sept with the 1st two weeks of school, confirmed Strep in classroom for worst pandas dd. Mild tics starting......did round of azith coupled with PenVK and have been very happy with it. No tics....however, with viral junk, some of the mild behaviors come and go. But all in all, pretty happy. Anyone else trying this protocol with PenVK??? Also we are on the whole DAN approach for couple years now. But recurrent strep exposures have definitely increased tics in dd. Just realized this is not the Pandas forum...but still interested in responses.

For some of the newbies, I would not try to "fight" with or change your pedis mind. It will most likely be a futile attempt.Try to find a DAN doc close enough to drive to. They will take a much more proactive and comprehensive look into Pandas/Pans. As you may or may not be aware, there can be alot going on for you to have gotten to the critical mass state your kiddo might be in..... gentic predispositions, inflammation, infections(bacterial and viral) allergies(food and otherwise), immune dysregulation and dare I say it..... vaccine related issues. They will be very thorough looking for potential issues. We have three kiddos all with some variability in Pandas symptoms from minor in one kiddo to severe to severe in second and more mild in 3rd kiddo. For us, the DAN approach has been expensive but worth every dime, nickel and penny. If any one has questions please feel free to IM me.

Does this really surprise anyone??? Shocking and disgusting, but not surprising. Those of us with Pandas/Pans kids know the horrors of dealing with main stream medicine....... at the lowest levels. I will not lose control of making the decisions. I pay out of pocket with a high deductible HSA and all the supplements I get from a DAN are on me. The moment we as indiviuals lose the power of the purse, at that point we will ultimately lose the control over our childrens care. And at that point, Those docs that are not main stream docs will be forced out or be forced to comply. Romney care........Now Obama Care.......we are not headed down a good path.

I would say that Dr L whom you might be talking about is our go to person for our kiddos. He is in Gahanna,OH. But I am not sure we are talking same doc. PM me if you need info.

Lactoprime plus from Klaire Labs and Sacchromyces B from same place http://klaire.com/probiotics_cat.htm

I would suggest trying to find an Integrative Pedi or DAN doc in your area?????? We have had great success with this route. Simple to understand, but hard to implement and costly. But don't let that scare you away though.

I would concur about getting immune responses to various pathogens looked at via blood draw. Strep and mycoplasma for sure. I would ask if kiddo has any quirkiness what so ever???? At 5, it can be tough to decipher. We did not really "get it" with our daughter until post Pandas diagnosis and found she in fact did have lots of issues, but they were subtle. Were more pronounced after getting treatment and seen the VAST improvement. Especially trying to deal with 3 kiddos close in age made it tough to juggle and understand what was going on. Clean diet???? I would investigate allergies and food allergies. Dairy for us was a huge one that had to be eliminated for healing.....esp in the short term. DD can handle dairy now, but during exacerbation, she could not. Hope this helps.

Wow.....Just wow.....How similar to our own experience. Many of the same emotions came back. Glad you put this on here!!!!!!

I would ask the PCP to show them to you and explain why they are neg. But it does not surprise me. The theory is zith has "staying" property that it keeps working 5 more days for a total of 10......thus always a f day script. Any Pandas/Pans doc knows this is most likely not enough time. For our worst kiddo we did a few five day courses prior to DAN doc doing a couple 30 day courses coupled with a protracted MWF prophylaxis. You can go to doctosvideos and they discuss ziths immune modulating properties if you don't just stop after 30 days.......thus thwthe MWF regimen. Hope this helps.

Joybop..................others might find this helpful too....so putting here as well. you will need the ranges for both in order to understand the ranges for positive.<br /><br />IGM/IGG are the Current(IGM) and Previous(IGG) measurement to figure out a current or previous infection. Our dd's was IGM of 5.9 H with a positive of greater than .9 So the H stood for "HIGH" Our Pedi did not even tell us and did not treat. We went on for several more months and things came to a head again. Needless to say we have gone the whole DAN route.<br /><br />As for the dosing, it should be done by weight and if your child is small and cannot take pill form, then they can give liquid suspension. This liquid suspension has a shelf life of 5-10 days so they(pharmacy) may only give a certain amount of suspension.<br /><br />The work around for incurring the higher expenses would be to tell the pharmacy that you want to pay for the ENTIRE script. You should receive a break in price in addition to the each time copay.<br /><br />One other thing, if you can, convert over to pill form. They are WAY cheaper than the liquid suspension. If your child cannot take pills, ask the pharmacy if a pill crusher and giving via apple sauce or other type food that can mix in the crushed Zithromax.<br /><br />Hope this help!!!!

Joybop-------sending a PM PM back if you have questions.

Hi Colton's Mom......Pandas??? In a word "PROBABLY". Your story is very similar to ours. As for the MMR, I would say yes to that too. But at this point, you need good problem solving solutions. A doc that will look at your kiddos overall health. We were "encouraged" to get the whole Ped Neur, Infectious disease doc, 'On our team"......I felt it was a crock and we did our own thing by seeking alternative treatments. Longer term abx are or should be part of the picture. But so should helping the body heal and deal with infection and inflammation. I would try to find a Integrative Ped or DAN doc. PM me if you need further info. Stay encouraged as you have got this early to get early intervention. Your ahead of the game since your early and here on this board where you can arm your self with info.

Hi Teri!! For us it(Pandas Progression) was as follows: ages 2-5 irrational fears, sep anxiety, mild behaviors and somewhat Oppositional defiant, quirky, irrationality overall emotional lability. ages 5-6 severe oppositional defiance in addition to above with increased intensity of all above. Dec 2010 at age 6.5 came down with severe eye,nose forehead, eyebrow scrunch and roll of eyes post strep tic diagnosis that was preceded in earlier week(s) with severe emotional distress....dark thoughts...truly scary.Penicillin took care of this tic and over all symptoms improved. kept on Pen till school got out in May of 2011 Sept 2011 Mild ticcing same as above started. We noticed a constant head nod (as if saying yes) Sept to Dec 2011--this progressed into full blown head nod, roll with shoulder and arm chorea like movements that were uncontrolled flapping of her arms. I say all that to say that I think until you can help the body: 1) Debulk any infection----------abx 2) Chill out the immune system------also abx but also figuring out immune triggers------foods, allergens, etc.... 3)***** Beginning to strengthen body and immune system. 4)***** Controlling inflammation and preventing future infections(best you can) I am not sure about what your doing other than what is stated above.....but wanted to just chime in and say we are with ya and wanted to give any info that might help. For us it has been MANY SUPPLEMENTS......I am not sure what has been the biggest contributors to our success, but I would not change what we have done thus far. We have all three out kiddos with it. PM me if you want more info. Keep your head up!!!!! Keep fighting!!!!!