MaggiesMoons

We also have United Healthcare.... Just got approved for IVIG, 3 rounds of it actually, to be given at 4 week intervals. Not sure if we will need to or should or will do all 3 rounds yet. We will decide that after we see how the 1st one goes. Just pulled up the Policy updates on PANDAS and IVIG with UHC and it they will be ending coverage effective 11/1/12 for PANDAS and IVIG. Since they have already approved us for 3 IVIG's at 4 week intervals I wonder what will happen after 11/1/12!? To do all 3 if we choose to will take us into the END of November. We will get the first one the last week of Sept. Could get a 2nd one in before end of Oct. I also read where they have classified acute rheumatic fever as "unproven" eff: 11/1/12 as well Isolated IgA deficiency and Isolated IgG4 deficiency eff: 11/1/12 both also as "unproven" So they (UHC) has covered their bases and are screwing these kids from IVIG at every angle!

Just wanted to share an update.... Going forward with trying ti get the IVIG.....so far so good and sounds like United Healthcare will cover it so keeping my fingers crossed and praying! Hoping to be able to get it done in our State, but if we can't then I have a back up lining up to roll in and take over and get things done! Seeing immunologist to push it forward locally, AND met an amazing pediatric allergist who after hearing our ds9 history of PANS(since 7 1/2) pulled me aside and told me he knows people and would make sure he got the IVIG he needed if we keep hitting rod blocks locally. He also requested records labs et all. So grateful to finally see a reg ped(even though he is an allergist) who doesn't look at you like you are crazy and just a bored mom looking for some drama! Hello~ our children are suffering and we will do whatever it takes to get them healed and get them back....BY ANY MEANS NECESSARY! So that was a "happy" moment! For the first time in 1 1/2 years my ds is going to bed and sleeping by himself! 3 nights in a row now....hoping it lasts! Another huge "happy" moment for us all! On a more serious note: just got another round of labs back and of course no one bothered explaining or discussing what they mean with me.... Blood levels are HIGH for Lymphs and absolute Lymphs and Vit D is HIGH......???? Will be calling the Pandas specialist we see to find out what the heck this is about? In the meantime, anyone have any ideas? I did read that the high lymphs can be associated with autoimmune issues and chronic inflammation! Uhm...ya you think....PANDAS! Sorry for my sarcasm just feeling very frustrated with certain Dr right now. Positive note: This song below is my strength! Thought I would share it even though it brings me to tears it is so reassuring to me and maybe will be to someone else! "I Lift My Hands" Chris Tomlin Be still, there is a healer His love is deeper than the sea His mercy, it is unfailing His arms are a fortress for the weak Let faith arise I lift my hands to believe again You are my refuge, You are my strength As I pour out my heart, these things I remember You are faithful, God, forever Be still, there is a river That flows from Calvary's tree A fountain for the thirsty Pure grace that washes over me.............

Will make a long story short and to the point: Ds now 9-- 2012 Pandas started at age 7 1/2 --Jan 2011 Diagnosed PANS October 2011 ABX started Dec 2011 and still ongoing at full strength of 500 mg daily Azithro. So ABX full strength for 8 months Can only seem to sustain 4- months no exacerbation if no exposures. Reacts to: Strep, strep in others, mono, and most recently noticed seasonal Allergies. Could be more, but this is the battle field thus far. While reaction to the illnesses has been minor PANDAS flares of 4-5 days or less then back down, this is due to him being on ABX since dec 2011 He has been symptom free for a solid 4-5 months: No ocd, or Tics! NOTHING---he was 100%~ Most recently....July 2, 2012 saw a HUGE exacerbation! Just as intense as the very first one! Literally brought us back to square one or so it feels! It is also the EXACT SAME time as his second episode (the one that lead me to PANS) as last year! Ocd, fears, anxiety, tics....the whole gang is back! I am almost certain this is due to seasonal allergies! As mine were pretty intense as well. We had made a trip out of state, but no one was sick. Tested family for strep-Negative.Son tested negative on rapid-waiting on culture to come back. Dr M ran more blood work--waiting on those results as well He is on ABX as stated above, not much help seeming to come of it now. Advil (ibuprofen) used to be a HUGE help, not much help now from that either for the tics etc. At this point I am afraid that the ABX may not be enough. It allowed a full blown flare to rage for 4 weeks plus, just now starting to see a minor reduction in symptoms, but tics are still there, as well some new things I think I may be seeing (not sure---still observing). At what point after doing the ABX protocol do you opt for more intensive treatment like IVIG???? I am at the point where I can't just sit here and wait to see when the next major flare is gonna catapult us back to page one again. Because I am scared, and my heart is broken because I thought we had made it so to speak to at least only minor flares I want input from others who may be able to offer their experience or knowledge! I don't want to wait too long before we get more aggressive, but I don't want to rush the treatment either. Is this a normal scenario with a major flare after doing so well for 8 months? A leading doc says IVIG is the "heavy hitter" and should be reserved. I feel if IVIG helps the very severe then why not give to the milder cases and STOP it sooner? Why wait until they become the "Severe" case and the damage is done!? Any help out there??? I am at a crossroads but need input from others who have been there.

I have not read the article, but am going to! I have a question: What or why did you get the heart checked? Was it because of the RF or something else? Was it just the PANS DX? I am just wondering if it is warranted for all kiddos with PANS....? The only thing we have tested for in the heart arena was through bloodwork Dr M ordered on our initial visit and round of labs. Don't want to miss the boat, but don't want to do what is not necessary either. I am praying for you and your child, wish I had more to offer on this. Hang in there~

Thank you for sharing that! I downloaded the articles.... after thinking we had this beat, it slowly came back. Only mild right now, but that tells me the ABX is not going to be the fix it all it once was.

Dr T was the FIRST Dr we got to run ANY tests! And he was a GODSEND for us!!! I couldn't agree with you more on his thoroughness, curiosity to look deeper, and he genuinely cares about the child and the parents too! He is a very dedicated doctor! LOVE him! When your son started with this at 8 were his symptoms severe? Curious as to why he still has to battle this at 17....keep hearing that they can outgrow it around puberty. Also you have seem to have done all the treatments I read about on here. We are 1 yr into this, only 5 months into ABX treatment, so very interested in others journeys because if I can stop this now by being more aggressive then I absolutely will keep pushing....even more than I am already!

Where are you now in terms of how well your ds is doing? How are the symptoms? What did you see prior to testing that made you go further and look into Lyme? I am interested in your story of how and why you got to this point and discovered lyme! We are early on in treatment with ABX and I do not want to do IVIG etc if it is not going to hold or make a long term difference. You can answer here or pm me if you feel more comfortable, but I am very interested!

My ds8 gets these "bumps" on his thigh area ONLY! PRE PANDAS It was dx as impetigo 2 yrs ago by our Ped, The bumos appeared after a strep infection that was treated with ABX, so the Ped gave us another round of ABX to clear the bumps. About 3 months later they came back again, another round of ABX. And again and again....tested positive for strep 3x with no symptoms present other than these bumps that are always in the same exact place. Again impetigo we are told and given an abx cream to use. This only temporarily cleared the bumps. And they continue to come back. Fast forward 2 years....bumps still coming and going. Ped here now (FL) thinks I am nuts when I told him of my ds history and the bumps being impetigo as the Ped in Ohio had dx. So for the sake of humoring me he tested my ds for strep and BINGO...he ate crow and we got the ABX. From there we did God knows how many rounds of ABX cream because this ped would not give the abx anymore and said it was not strep......Seriously? So I asked for a Dermatologist referral thinking they would get to the bottom of this, wrong again, she just gave me MORE abx cream! One ped told me to do bleach baths---I was appalled! This still has not cleared the bumps and they continue to come and go! I am certain beyond a doubt that this is what caused my ds8 PANDAS! He for the past 3 years now has not completely cleared his system of strep. He does not make antibodies to strep either so he cannot fight strep off on his own! Nor does a low dose 10 day ABX do any good. That is obvious to me now! Dr M recent;y took pics of the bumps, and I am doing the same. Keeping them as part of my daily journal binder! And in my experience they ABSOLUTELY 100% go hand in hand during and exacerbation! The timing is parallel! He gets sick or even looks like he is going to get sick and within 1 week or sometimes less the BUMPS start popping out again! So YES for us there is a HANDS DOWN connection! Just wish someone could culture them to see exactly what they are, definitely impetigo (3 docs now confirmed) but whether it is strep or staph resistant MRSA I would like to know. It is never contagious to us, and seems to be coming from the inside out, like his body is pushing out what he can't fight off in some way! I would be interested in a pic library as well.

Did the doctor order the test or did you have to ask them to order it? ds8 always seems to have a huge appetite all the time, maintaining current weight. Not sure if this is just growing or something else. Where he puts the food is beyond me! Wonder if there is a home test? I will do more research...

I did read the post on OCD curing her! That is an awesome and hopeful story! That is what brought it to mind again about the TS. My ds8 does not swab positive (at least the past 6 months) and his tonsils are not swollen either. He did not have elevated titers 7 months ago when tested. And has been DX sero negative PANS. He does n ot make antibodies to strep! So nothing is going to show up in way of titers. If that is a requirement for the ts then we may be screwed. I will speak more to Dr M about this and see where we go. My ds has not been back to his regular Ped since we began with Dr T and Dr M. because the Ped does not understand or know much about this. Maybe Dr M can reccomend someone. Dr T did say initially that he does recommend TS... Please keep me updated on how your kiddo does post op and beyond!

I am interested in knowing the outcome after a tonsillectomy. I have randomly read some pros and some cons, so I am trying to get a poll of all people here as to their first hand experience! I have three questions to ask of anyone who has had this done what happened post op-cure or no cure? 1. Did it help decrease or eliminate the PANDAS/PANS? 2. How severe were the symptoms prior to surgery? 3. Who recommended it be considered or done?

Interesting, makes sense that at night it would be worse as they are active (parasites). How did they diagnose parasites? Other than itching what were the symptoms you noticed?

Eileen, You said " If it was infection that triggered a downfall, maybe they need something to shut down the autoimmunity." My question is how? I am with you on the issue of ABX et all clearing things, only until the next infection triggered response. I personally feel that the autoimmune issue/response is where the real problem may be at. Now that is has been triggered, by whatever cause: strep, myco, etc., it seems to be in hyper drive in response to other viral or bacterial triggers. For me, this would be the million dollar answer if someone could figure our how to shut down the over reactive immune system-close the BBB to where it should be so that it does not allow things to pass that should not! I have researched closing the BBB and cannot find much if anything worthwhile or effective. For many, the treatments we have are simply treating the symptoms and not the root cause now that we are at this point. Does anyone know how to close or heal the BBB to some degree permanently? Or how to shut down or slow down the immune response these kids have? ~something has to be better than Ibuprofen as a temporary fix.

My ds 8 also has some itching and it seems to be more prevalent during and episode. His is mild, but I do notice it. He is PANS also, but no lyme and tested negative for that. So I think it may be an issue of histamine for us. Alot of these kids seems to have ups and downs with histamine levels. We had been high and low at different pints. High seemingly to be during an episode. Again his is mild, itching and episodes, but I think there is a definite link to episodes.

I too would be interested in any information out there on how to heal the BBB and close it back to what it should be. That seems to be the key in some way to stop the reaction from happening in the first place! I have seen first hand how the Ibuprofen (we use Advil) makes a huge difference, and according to what I have read, the reason it does is because it decrease the BBB inflammation. I am also wondering about the IVIG and how it works long term down the road. My ds8 is now 1 year into it, 50 days ABX and going strong, starting a tapering off next week very slowly to see where we are at now. I would say we are at 97% right now, so I am nervous about the taper but know he has to come off ABX and we need to see if we have cleared the stuff. He is diagnosed Sero negative PANS- meaning he makes NO antibodies to strep. So with the IVIG i am researching now as I feel this may be our next step if he cannot hold his own once off ABX. We have been lucky in that his symptoms are not as bad and milder than some I have read about. So an info or experiences with IVIG would be appreciated as well. I have read what is on here so far on it, but am wondering the success rate long term. My ds8 does not make any antibodies to strep, and his pnuemoccocal numbers are borderline. Low IgE and basophils. And from what I am hearing from some expert Dr.s this is a common thread as well in PANS/PITANDs