JAG10

Cobbie- I would agree with you about the dreaming/doubting observations. But once I was onto it, I saw it again and again with the IVIG protocol; which btw, is not the purpose of the IV Solumedrol, right? That's for headache prevention. She wasn't even getting headaches anymore. Yet I observed the same improvement, very short lived on only two days Solumedrol, then fade as I imagine those nasty antibodies started cranking out again. But this is autoimmune disease, right? Steroids are wonderful except for the side effects. Stop the roids, stop the relief.

So if IVIG doesn't "correct" the immune system, then it's a cellcept type med for those significantly impacted or cross your fingers and hope it is outgrown? I get the whole onion layer analogy and that there is more than one way to skin a cat (terrible idiom), but I guess I feel like we've peeled this onion down to the core, can manage inflammation and the biological "terrain" so to speak, but naughty t-cells are staying naughty and who is really looking at pandas from this angle???? If T cells and B cells can go astray in the first place...why can't they change memory again? What would lead that to happen? Again, don't get me wrong, she looks a little ADD, that's it. It just bugs me that I know this is still a (barely) simmering issue and that the other shoe is out there looming around.

Hi K! She is not taking steroids regularly. What I noticed almost two years ago (after about 5 treatments) was that when she received IVIG and the prednisone or Solumedrol with it, she had about a week of being completely neurotypical in that everything was effortless like conversation, organization, doing her hair, just managing life! Then it would slowly fade. It wasn't the IVIG; it was the steroids. So fall of 2011, I shared my hypothesis with Dr. B and she did a 3 week steroid taper. The taper helped her so much, I had a meeting with her new teachers and they were perplexed why she would need any academic accommodations or why we were even meeting about her at all while her former teachers got filled up with tears. The taper also brought an unwelcome weight gain. For dd13, the positive response to steroids is clear and immediate, but does not hold. It's like there is a slow steady leak that we are now in a position to manage; it's not the gaping hole it was years ago. While steroids likely completely stop the bad antibody production, they do not close the valve or stop the leak once the steroids are d/c'd. I might add that I get very pandanervous this time every year. She has contracted strep every early August for the past 3 years. Tick-tock, tick-tock.....

I'm not complaining here. I know many of your children are suffering and you are working day n night to get them to where my girls are now. Some of my old mom-pal's forum names were Tenacity, NeverGiveUp....that is you all now. My girls have had a tome of blood work since 2009. There have been some things here and there, but for dd13, one persistent nemesis- elevated strep titers. That's it. Is it persistent strep infection or autoimmune response (which is that the same as faulty t-cell memory?) My 13yo always has elevated titers, always. She's had 10 IVIGs and her titers have never gone below the upper limit, hovered there on IVIG, but never below. My 10yo is also pandas, less severe, caught years earlier (thank you big sis) well controlled, never needed ivig and her titers do frequently return to the normal range. Just got lab work back in prep for our yearly face to face appt w/Dr. O and older girl's titers are ASO 287 DNAse B 495 and hasn't had strep since last year. Her symptoms are well controlled also (she's at sleepaway camp right now!), but I will say she is completely neurotypical on steroids; no social issues, confident, easy conversation, ORGANIZED. I'm guessing all we have done has helped her BBB heal, so she is better protected, but I feel like as long as those titers continue to be elevated, this won't be over, over. Her tonsils are out. In my gut, I don't believe there is any persistent infection. So...we're just waiting for t-cell memory to change because of age? Menses onset 9/2011. thoughts?

I hope the lawyer is skilled and you get some positive feedback.

We also see Dr. Miller. He knows some about pandas. The best thing is he will cooperate with you and another doctor. So if you do a phone consult with a pandas specialist and need antibiotics or steroid taper, he's likely to cooperate with you locally. But he has a full family practice and I would describe him as pioneering the pandas treatment movement. That said, he's a terrific team member.

I'll briefly share my dd13 always had normal AST/ALT. Her abx was changed to Bactrim and within 3 weeks both levels shot up to hepatitis range, like 700 and 350 range. She has a sulfa intolerance which is what caused the liver enzymes to spike. She was taken off Bactrim immediately, and her AST/ALT levels returned to normal where they have stayed despite years of Zithromax and many supplements. Her symptoms during those 3 weeks were purely physical, nothing behavioral. She had headaches and nausea. It doesn't hurt to have them checked periodically.

I started out with an electrical engineering scholarship in college, but being the only girl and all those aspie boys scared me off (plus teo semesters of Fortran) so I became an SLP. DD13 wants to be an engineer and is capt. of her robotics team. DH is a financial analyst in banking. What does Dr.K say...... More wires to get crossed and outta whack? Or are we the ones who keep digging until we end up here.

Wow. So out of the loop and so sorry your family is going through all of this! Warmest wishes for a speedy and uneventful recovery. J

Ian might not swab positive on abx., but that doesn't mean he's clear. If I was in your high heels, I'd have all three of you swabbed AND blood tests while you are at the office Friday. Sometimes, blood tests don't tell much, but in my experience on this board, crazy high titers always mean something; they're never normal and you don't know until you look. IowaDawn or WorriedDad's family had crazy high titers...in the thousands. OR...you can try sending an email to Bouboulis's office to see if you can get this done so he has the results at the time of the appointment.

Did they run in the office and then culture because it was negative or sent out for culture because they couldn't run it in the office? Idk, Lisa, that's quite the coincidence don't you think??? I mean if it was titers, I wouldn't think so cuz- who knows, but he swabbed positive? Was he positive 3 years ago too? When do you see Bouboulis again? EAMom- your question makes it sound like if you are asymptomatic, you are also a carrier. I did not think that was the case. I thought you could be asymptomatic and simply clear the infection on your own. I thought that's what happens with most healthy people over 12 yo. It's not that only little kids get strep, it's that by the time you are 12, most people do not get symptoms and clear the infection without ever knowing they had it.

Hmmm, I don't know Dr. J at all, but I don't like the sound of this. You paid top dollar and should get to speak to him directly. Nurses and office staff are not why you paid that $1400. You paid for his interpretation. I wouldn't get into it with the gate keepers again. Leave a message or send an email that you need to speak to him before the end of the day tomorrow. Having to call for results and then they don't make sense to you or match what he said in the office is highly suspicious of error. Good luck! Jill

Hi. I was told to use Vitamin D3 with K2. Vitamin D3 is absorbed better with K2. If they can get some sunshine, without sunscreen, that helps too. 15-30 minutes/day. We supplement during the school year, but not the summer. Both of my girls have maintained levels of 50 using the D3/K2, brand does not matter; we've used different brands depending on what is available.

Christian Mom, that is a horrible experience and you paid top coin for the privilege. I have very mixed feelings about Dr. Elia. After many years on psych meds., I took my dd13 who was 9 at the time, to her for a second opinion. I had heard of and read the sound bites about pandas, but my girl had no history of strep. After evaluating her, Elia made a list of recommendations, last on the list (after get her an H1N1 vaccine) was ASO and anti-DNAse B titers. She raised (but minimized) the possibility of a "bug involvement" so much, I waited 3 months to do the blood work. Her titers came back over the lab's ceiling they were so high. In the meantime, we were trying the SSRI "low and slow" approach with one of her fellows and CBT across the street at UPenn....neither of which helped a fig. I was so hopeful and excited to show Elia the lab results....she brushed it off and said she had been sick too long. Part of me says...What the heck did you order the test for then, but the rational part of me is so grateful she did. Once I knew what I was dealing with, I ran people over getting my girl to doctors who would be willing to help her and those doctors saved her life and my family's collective well being-after years of treatment. I have since twice emailed Dr. Elia about my daughter's recovery and how these children with long standing, misdiagnosed pandas can recover, get off all psychmeds and lead the lives God intended them to lead. I thought, perhaps I could encourage Elia to take more risks, after all...I wasn't asking her for anything. She never responded, not even a smiley face. I know she was at the pandas pow-wow in 2010, perhaps invited in hopes to make headway with CHOP. When I mention Dr. Cunningham's research panel/study, she had never heard of it or Dr. Cunningham and said you don't have to "pay" to be part of a research study, so it wasn't legitimate. At that time, she was definitely not completely "in the know." I didn't find her to be a leading "expert" (many, many parents here had her way beat in that regard) but she knew some and the some she did know helped us get on the right track. I'm very conflicted, but probably more peaved than grateful. If we didn't have the resources to plow past CHOP, her lack of action would have been devastating to my daughter's life. I'm resentful of these doctors who portray themselves as "treating pandas" and then end up harming the child with erroneous information that is out of date or self-serving. I truly think it is a sin that they will some day have to answer for. Kerry- You have a pandas friendly team in place. I think you would be barking up the wrong tree with Elia.

I'm not sure what to say about Amantadine. My dd13, who is tall, full grown woman size, started at 100mg and we stopped at 200mg. I would describe her reaction as "disappointingly typical" to SSRI-like meds where almost immediately she began producing easy flowing, age typical and interesting conversation, more complex vocabulary, more social. Then that faded to baseline, which isn't bad, I just know that it can be quite easy and effortless and social for her...and I want that for her if I can get it. We increased to 200mg without much change. Around this same time, we started Enhansa and were seeing definitive changes with that. So we decided to table the Amantadine for the time and continue with the Enhansa leaving the door open to revisit it later. Dr. O recommended doing the neuroscience testing, I just haven't gotten around to it. It's the end of her 7th grade, lots going on, I'll do it in June. But my general reaction was that her reaction to Amantadine reminded of when we had tried SSRI's; great then fade. Dr. O was not surprised.

I honestly don't understand it, Laura. If a doc doesn't tell me to order it, I won't know what to do with the results. Dr. O wants us to do the neuroscience test just to make sure we aren's missing anything and I feel like we are in good hands with her direction. I do know that people need to be careful about not confusing Sulfa drugs and sulfur. My dd and I cannot handle sulfa drugs like Bactrim. My dd's AST and ALT went crazzzzy high, then came down just as quickly and have remained completely normal despite bountiful meds and supplements. NAC didn't help or hurt; it was a "does nothing-move on." " Sulfa drugs, (sulfanilamide, sulfathiazole, sulfadiazine and about a hundred others) are a class of pharmaceuticals called sulfonamides, which are the amides of sulfonic acid. They are useful because they stop bacterial growth, even if they don’t actually kill bacteria like antibiotics. Some people are allergic to sulfa drugs, but this does not carry over to sulfate compounds. I’ll say that again: there is no connection between sulfa drugs and the sulfates found in your body, your dinner, or your nutritional supplements."

Okay- we have the HMO version which is Keystone East. We would be authorized for a year at a time. Honestly, I always felt nervous because the bills never seemed stable. Then the facility fee was added, but no co-pay, then I started getting bills for co-pays. I can't say I'm going to miss that uncertainty. She is doing well. We have recently added Enhansa into the mix trying some alternatives to keep health strong/less vulnerable. Since December, she's been taking IgG 2000 also. We are heading into the good months now. Fresh air and sunshine always help. Can you go online and see how your January and March claims are being processed? Best wishes with your decision. It shouldn't have to be this way.

My dd13 has been taking it for about 3-4 weeks. She has just worked up to 600 mg with breakfast and 600mg with dinner. The die off is still occuring (in her case, bad gas). She did have viral symptoms for 4 days in that time frame, but who knows if it was a newly contracted virus or not. She also complained on sores in her mouth, which was new. So, we are still working on it. I always remember what Dr. K told me years ago; good reaction and bad reaction are positive and diagnostic. No reaction/does nothing- move on. I have seen improvements in cognition, but she also seems more anxious. Does improved cognition/awareness raise angst in a 13 year old? Perhaps. I think it's too early to tell and we need to continue to monitor. I have been very pleased that the Enhansa appears to be effective. We've started our younger dd9 on it as well, but will only go to 150mg for her mainly as anti-fungal with abx and probiotics.

K- When was the last time you re-authorized with BC/BS? I ask because the last time we went to re-authorize with BC/BS after being covered for IVIG for two full years, they pushed back. They said for CVID, she would only be approved for low dose, monthly. At that time, we had worked my dd13 down to HD every 16 weeks. I actually canceled her December IVIG appointment because she was stable before getting the letter, so I took it as a sign. But my point is that I believe we are not the only ones who only recently were given a hard time by BC/BS regarding high dose and frequency. I don't think they give a fig about standard of care, but I'm sure they are onto what is going on with CVID as "acceptable" dx but HD treatment regimen.

Well......I'm glad they lost the paperwork rather than you lost the appeal, which is what I thought at first glance. I'm becoming so distrustful of the whole system. I just don't know what to think about any of it anymore.

Awwww!!!:wub: Congrats to your ds! And you sound wonderful too! God bless-Jill

I'm confused how you can sell the same product with and without prescription...that seems weird. I was ALL jazzed about starting Amantadine. At 200 mg, it didn't seem to do much, we shall see if doc increases on next visit. Then we added Enhansa and there was significant die-off....of what, I'm not sure. Could be yeast as we were all in hysterical laughter at the noises and seriously toxic smells coming from dd13 (TG she has a good sense of humor!) Now, she has a virus, she was actually home from school today; chills, mild fever, sore throat, congestion, the whole enchilada. Could be coincidence, could be anti-viral properties of Enhansa, idk. My dd13 had been cycled through a couple different anti-fungals that did WONDERS for her skin-significant acne down to next to nothing! But there was something that those anti-fungals didn't get as evidenced by previously mentioned stink bombs (they looked weird too, she brought me in the bathroom to look at her alien poop, like tentacles, tmi???) As far as behavior goes, I have seen some regression. Right now she is taking 150 mg in the morning and 300 mg at night. We started at 150mg and the toxic gas came as soon at we increased to 300mg. We are supposed to work up to 1200mg (they are tiny capsules.) The goal is to eliminate some of the other stuff. She was on two abx twice daily, now she takes each once. She was on a script anti-fungal which we are eliminating. We are not there yet, but Enhansa sure seems like it covers many of our group nemisis; anti-fungal, anti-bacterial, anti-viral, anti-inflammatory.... Our purpose with Enhansa is to eliminate some lingering ADD symptoms and mild social anxiety that would completely disappear with prednisone. I see the die-off as a good thing.....better out than in

Honestly, I'm not sure. Our doctor called in a prescription for it and insurance covered it......which they would not do if it were not a prescription medication. Idk, I'm confused.

Kathy, My crude understanding is that different scripts get at different strains/types of yeast. My older dd is taking Enhansa which is also terrific for yeast. Doc would have to call that into Lee Silsby pharmacy.. Enhansa is also highly anti-inflammatory, anti-viral, anti-bacterial and anti-fungal. Need to get some prescribed for myself! Supposed to be great for your heart/cholesterol. Jill

I use Olivus. I use it for me, not my girls. They are on zith. I use it because I'm an SLP and my office is between two K classrooms with germs a plenty.