JAG10

dcmom, This sounds very reasonable. Given your circumstances you bet I'd do the same thing! Good luck! Wishing your girls health and happiness by any means effective. JAG

Dawn, You are such a "can-do" mom! A trailblazer who makes it easier for those who will try to use those paths. Best wishes and pray complete health is achieved shortly! Jill

Way to go, Melinda!!! "Santa Baby" must be your new favorite song All my best! Jill

My dd11 has a very similar set of lingering symptoms, which you can imagine has a different set of consequences for a 5th grade girl than a K boy. She was very silly/goofy by summer after 1st grade (we didn't discover PANDAS until 1 year ago.) So much so, she was "diagnosed" bipolar/mood disorder though we only saw the manic/Jim Carey side and never any raging, ODD, turn on a dime wickedness. The silly/goofy behavior has improved dramatically since her 1st IVIG in May, and it was REALLY bad for her age. She is scheduled for her 2nd IVIG in 3 weeks as we hope to get those lingering issues resolved. The problem with our neurologically/cognitively sick kids is that their symptoms can back door them into so many different diagnosis, it's almost comical. Every time I've ever mentioned the "silly/goofy" symptom on the board, I've had many different folks mention yeast. She has no physical signs of yeast and the silly/goofy thing has improved with medical treatment for PANDAS. The months before her first IVIG, she had been on an unsuccessful cocktail of 3 different types of psych meds; a mood stabilizer, anti-depressant and stimulant to try to get her to a point where she could attend school with support. Now she's on NO psych meds, just zith., fish oil and probiotics. She still reacts to immune challenges, she still has difficulty with task completion (needing prompts to do too much) and concentration, her pupils are still dilated a lot. Her ASO and DNAse B titers have never tested in the normal range (YET) but they are no longer off the charts & over the tilt measure...and neither are her symptoms. I hear you....I want that last 25% too and we are going to get there!!!

My dd11 broke her wrist 12 weeks post ivig. I didn't notice any changes attributed to that.

I sent this to my school psychologist and Director of SPED....... Wonder if I'll still have a job? I feel so embarrassed every time I read an IEP horror story on here. But as someone said to Johnsmom earlier today, look across the table for the compassionate eyes, they are there somewhere....BTW, I got stood-up by both the parents and the Director of SPED for an IEP I was holding this morning, WTH???

We live in the suburbs near Philadelphia, PA. It is not automatically covered, in fact, with the same insurance we paid out of pocket in May with Dr. K. I don't know exactly what information Dr. B submitted that swayed them, but he seems to have a good track record and perhaps your Dr. S can call him. He submits for different immune deficiencies based on the lab results obtained. My dd11 had low IgG, low IgA, failed strep pnemoniae titers (vaccine) some failed H Influenzae vaccine too. Some companies have specific thresholds for what is covered for "low IgG or IgA" i.e. just cuz the lab says it is low doesn't mean they think it is low enough for treatment. I also don't know if it is a combination of factors that can tip the scales, but he did have us repeat the Strep Pneun. 14 serotypes so he would have two measurements, both of which dd failed with no response to a majority of strains. I'd have your doc call him. He said he usually doesn't call the peds or GPs unless they have an interest in PANDAS, but if they do then he is more than willing to help the cause.

We have Independence BCBS's direct HMO-Keystone and found out yesterday she is covered for 6 months of IVIG. (Praise God!) It depends on how it is coded. Is your purpose to get it covered....or get it covered for PANDAS?

I got the list of labs ahead of time because someone (HealingtheDude, maybe) gave me the heads-up to do so. I had to call back and specifically ask for it, they don't automatically send it to you. It is written like a lab slip and a letter in hopes that your pediatrician will order them for you ahead of time, but also says if not, they will take care of it at your visit. My ped did it, I made dh deal with her, but honestly she was a little reluctant and admitted she didn't know what many of the tests even were (there are like 23 different tests.) Gratefully, the ped sent me the print out of the referral bcs 7 of the 23 were the wrong tests (she is not incompetent, many of these tests are only slightly different, but after being on this board and studying this stuff for a year, you get the differences-I actually went online and looked up the code numbers on Quest.) So, I called the ped back and she changed the wrong ones so we had the complete set. EVEN going with all of that done, we still had to get more tests completed to help build our case for insurance approval. Dr. B's office really know what they are doing with regards to getting insurance to approve IVIG, because we just got the word yesterday dd11 was approved for 6 months!!! Huge, HUGE relief since we paid out of pocket (with same insurance) to Dr. K just this past May. Praise God, she goes Feb 2-3!!! (FYI, our appt w/him was 11/29 to give you an idea of turn around time) Hopefully you can plead with your pediatrician to order since you are traveling such a distance (that helped convince ours.) He does also list Dr. Cunningham's test and IgeneX, those can both take awhile, but don't worry if you don't have those for the appt. Good luck and a thank you to all who have helped me too! Jill

I think that is some good back door advice if you are going to be dealing with that treatment center; use a credit card that's limit is close to the estimate of service cost. We have had problems with them too. We did get a quote ahead of time and that is what we paid, but our insurance paid $4550 and we never saw a dime of that money. The center claimed it was paid by mistake and that they would not release it because our insurer would come back for it, even after they called our insurer to confirm payment. So, I recently called our insurer and asked them to rescind that payment; if we are not going to see any of that $, then neither will the center...I guess our insurer is the one to make out in this fiasco. I also agree that the medical care provided by Dr. K and the nurses at the center is top knotch, but the billing pratices are predatory. I wish Dr. K would find another facility, but I'd bet he's considered the options and tries to make the best decision in the interest of his population of patients as a whole. Sad, unethical and a bad business model, but for those considering having Dr. K treat their child, know the care your child will receive is in NO WAY shady like the billing department is.

Is this something ALL of our children have in common? Failing a majority of the 14 serotypes? Has anyone's child had a healthy response to the whole or almost the whole panel? (can you please post if your child had a normal response?) So, in some cases, our kids over-produce antibodies to strep antigens (ASO, aDNAseB) but fail to produce antibodies to all 14 serotypes?? Is that right? Has anybody had other vaccine responses tested other than strep pneumonaie? Should we be looking at other vaccine responses?

Kelly, Wow, you must have been reading my mind with my older having just turned 11 I know we are over due. I guess I've been putting it off until she is better cognitively and won't fixate (or at least not in an OCD way) about any info I would give her. Am I making excuses to kick this can down the road a couple more months? Yeah, I think I am. She still watches Sponge Bob AND thinks it's hysterical.... Of course, so does her dad. Oh for crying out loud, we sound pitiful! Let me know how it goes! Jill

The frequent use of charcoal jumped out at me too, but we hardly have any experience with it. Johnsmom might know.

I can only tell you our experience. My daughter has been doing 1.5mg/kg every 4 weeks since May 2010. She does have immune deficiency and IgA is very low. We use gammagard because it has low IgA (reduce risk of autoimmune reaction to IgA). She has always done very well with it. In November, because of scheduling difficulties, we did her infusion 3 weeks after the last one, instead of 4, and I saw better improvement than in the past and did december's just a few days more than 3 weeks, same difference in improvement. I'm going to check w/ immuno and see if we can switch to every 3 weeks. My feeling, from our experience, is that it is quite safe. Peg- I know there are other parents on here who reported their children received IVIG every 21 days and said that improvements diminished when they tried to extend to 28 days, but I'm not sure exactly who, maybe nevergiveup or coco?

I think this is Kelly's point....There seems to be no way to the satisfaction of those who frequently debate here of "ruling out lyme." Some people are intimating that "all PANDAS is really Lyme, you just haven't woke up to smell the coffee yet." Honestly, that is the way the debate is evolving. It started a few months back IF your child was not having success with the tiers of PANDAS treatment and you were stumped, check into lyme and co-infections. Now the conversation has shifted to say that you should do extensive lyme testing, see an LLMD, and see how your child responds to lyme treatment before possibly wasting your money on expensive IVIG or PEX. Each passing day this information is being repeated with stronger and stronger conviction and less and less humility. I realize parents have strong, passionate feelings and opinions about the treatments they are pursuing on their children's behalf ESPECIALLY when they are seeing results....but hasn't your own history taught you a little humility? Haven't you been wrong before and isn't there a decent possibility you don't have it all figured out this time either?? Too many old friends are going into hibernation and those old friends have a lot of wisdom and experience to share with the rest of us. Maybe we could all work on keeping doors open or at least ajar to a balanced debate.

Linda, Are you flying all 4 of you to CT from Dallas? That is going to be some hefty traveling bills. Here is praying your other two boys can be managed through abx and hopefully, only the one needs IVIG. The whole sibling thing can be very confusing and just take your breath away! We have a definite PANDAS dd11 who is progressing well and preparing for a 2nd IVIG and a younger dd7 who has the high titers and much milder, but still there, symptoms. Our younger one has some urinary issues, anxiety, and a lip-licking tic when she gets sick...and some immaturity at times too. Of course, I am so much more aware and treat her with abx, so she is way ahead of where her sister was at the same age...and honestly an innately milder case. As much as we PA folks gripe about CHOP, we are fortunate to be on the east coast and have a few options in driving distance. We did the travel thing to Chicago last May for IVIG and while I LOVE Dr. K and honestly believe he is a genuine hero in the history of these kids, the treatment center where he performs IVIG is shady on the billing end (I actually paid in full up front and after 7 months of trying to get reimbursed the $$ my insurance company paid to them with NO success, called our insurer and told them to rescind the payment!!!) So we are now traveling to CT as well, but it is only a 3 hour drive and I'm crossing my fingers for Christmas Dr. B's billing office calls and says they obtained pre-cert from our insurer, that's really all I want, but I don't think Santa's elves can make Gamunex! You and Fixit and all you moms are in my prayers. Stay strong and keep up the good fight! JAG

You can ask the receptionist to send or fax you the list of labs he likes done for his PANDAS patients, it's something like 23 different labs. He will not order them for you ahead of time, but if you can get your pediatrician to order them, then you will get more out of the appt. If you can't get a doc to order them, then he will order tham at your child's first appt.

WD, This is my fear; that folks are leaving the board or afraid to voice their opinions for fear of offending people or being shut down. LLM- I think you have a right to state that your child has gotten more benefit from the $3 bottle of bactrim than 20K in PEX and IVIG. It's your opinion and not nasty towards others choosing to spend their money for IVIG, a treatment you (sort of?) regret. PMom- I think you have a right to question why people need to pay hundreds of dollars for Igenex testing just to have to pay more money to confirm band 31; that seems like a reasonable question of the lab and one I've wondered myself. We, as a community of parents of "PITAND" children have everything to lose and nothing to gain by shutting down or shunning the questions and view points of one another. I think politics and religion was a fitting analogy.....where you end up only speaking with those who share your point of view; how sad that would be for our kids. Well, I'll say it...I don't want a forum where everybody either agrees with the most persistent and popular trend of posting or they just drop off. People who are pro-, con- and unsure about lyme should all speak up otherwise this forum will no longer be as valuable as it has always been. I do not want to go back to the time that this forum turned nasty. I ask this in all sincerity, without meaning to start an argument - could you please avoid statements that seem to criticize others who may have done tests or followed protocols you don't personally agree with? I support your right to express your opinion, but not at the expense of others. Maybe it's not how you meant it, but it just reads "meanly". As an fyi - my son's doctor has kept him on Augmentin XR while we follow a more traditional protocol for Bartonella. He did not want to rock the Pandas boat or mess with anything that was working.

WD, I'm not sure what those results mean or any of these Lyme results mean because no matter what the symptoms, no matter what the lab results some will say pursue lyme. If the results are negative or indeterminate, your kid is sooo sick the lyme is hiding. If you're positive, well, there you go, no doubt. I'm not a scientist, but I trust my instincts and I can't make any sense of it-everyone and their mother, father, sisters and brothers has lyme. Whether all these kids and parents actually have lyme or not; I don't know if it matters. Parents and kids are reporting positive results from the "lyme" treatment and on that note I say that is fantastic news! Even if it turns out down the road much of the lyme turns out to be cross reactivity for PANDAS/PITAND, well then these families have discovered more treatment options for the toolbox and that's awesome too; no harm, no foul. We are all here to get our kids well, not win a Nobel prize in medicine! I tried psych meds for my girl for years trying to get her some relief of her symptoms; meds for bipolar, OCD, depression, seizures, blood pressure, ADHD; if any of them had worked I wouldn't have cared what they called it as long as my kid was well and thriving toward an independent, happy life. But they didn't work and that's why we kept looking and getting more opinions. If the treatment protocol for PANDAS stops resulting in improvement for my girl, you bet I would pursue all possible treatment options available including lyme protocol treatments to get her well. Your son is doing well now, so I don't know if you want to "poke the bear" (pun definitely intended!!!) I'm sure this post isn't going to win me any popularity contest, but I just try and call em the way I see em. Take that for what it is worth and know I genuinely wish everyone's children wellness.

Forgive me if this was already covered, but do those of you with children who have tried both Zith and Augmentin, did you find a greater need for something, either supplement or prescription, with mood enhancing properties on Zith than you did with Augmentin? Dd11 switched from Augmentin to Zith about 2 1/2 weeks ago. After about 10 days, we saw notable cognitive improvements, but mood instability and sleep issues. Added the 5HTP in a few days ago and she is much, much better. She never needed 5HTP on Augmentin, but Zith appears to be bringing benefits to the table Augmentin did not.

Hi My dd was 10 when she had her first and only IVIG 7 months ago. She had been on zith and biaxin for 3-4 months prior to the IVIG and in terms of seeing behaviors we hadn't seen in a long time, I think she saw a lot of that on the abx prior to the procedure. She did fine with the procedure itself and got the massive headache right on cue. What I noticed immediately afterward was this; significant improvement in cognitive clarity and OCD including picking behaviors and restrictive eating, but hyper like a damn had been released in her mind. I never really saw her "get worse" from IVIG, but sometimes the behaviors would shift back and forth each time to a lesser degree than the previous time. Everything was going really well until at 11-12 post IVIG, she was exposed to strep by her sister. Although we were all over it and slammed it down hard and fast, it took 11 days before the behaviors began to subside. At that 11-12 week mark, I would have rated her as 75-80% improved, but she was exposed at 12, 15, 18 and 22 weeks through the end of Oct. Each time increasing the abx to try and stop the downward spiral and one steroid burst. These measurements were effective in eventually stopping the downward spiral, but she has stalled at that 75% mark. My dd like your son had been sick for a very long time with things brewing through out preschool and K, but the WHAM no doubt something really bad is happening here happened in March of 1st grade (we think preceded by myco-p.) She had been on a wide variety of psych meds in all different combinations and doses which were all d/c'd at the time of her IVIG and she remains off them now which is a huge improvement all on its own! But she still "reacts" to immune challenges and not just strep. So, we are pursuing another IVIG for her. I rate her first IVIG as a definitive success, just not enough for a kid who had been sick with this disorder for so long. We did complete the IgeneX testing and she was only positive IgG for band 41and not IgM; I am comfortable Lyme is not an issue in her case. She does have some mild immune deficiencies similar to what many of the kiddos here exhibit.

Birthday wish: I have to add from my dd11 (now) We just finished dinner. Dd got a Reeses ice cream cake from Friendly's. I had to stick 11 candles in a cupcake because they wouldn't go into the ice cream. After she blew out the candles she said seriously "You wanna know what I wished for? I wished that I would get better and for an X-box. I wish for one serious thing and one not-so-serious thing, getting better is the serious one." I said "That's good cuz you're not getting an X-box and you are going to get better!!"

Beautiful!!!! Not much more to wish for than that. But you give others hope, especially those with older teens. Give thanks and rejoice!

Dr. Elia at CHOP uses pheresis as well, but last I'd heard only for severely debilitating, sudden cases.

Really??? Most of us have Lyme? All from tick bites or did he say we are getting it some other way? Is he saying Lyme is passed human to human like a cold? Is this what most of the LLMDs are putting out there, that most of us have Lyme? Am I the only one who feels suspicious the umbrella of who has lyme and the symptoms of lyme just keeps getting wider and wider? If most of us have Lyme, one you "get rid of it" what's to keep you from getting it again if it is so common? I think Lyme is a real disease, but not EVERY disease.