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PANDASmcnuggetsw/fry/coke

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Posts posted by PANDASmcnuggetsw/fry/coke

  1. show me your codes and I'll show you mine

    in PANS / PANDAS (Lyme included)

    Posted

    On the phone, our carrier, which starts with a B and rhymes with SUE, said they would not even tell us the guidelines for ivig coverage unless we told them the procedure and diagnostic codes first. Now I have the codes and after reading some of the posts here, I'm not even sure if I should call them, but rather let the hospital handle it. I'm afraid they are going to to hold us to these codes even if doctor changes them.

     

    What do y'all think?

    Thanks,

    PANDAS McNuggets w/fry/coke

  7. Kill it first before IVIG?

    in PANS / PANDAS (Lyme included)

    Posted

    I think we have done most of everything on Buster's flowchart in pretty short time. (thanks Buster!) This all started in May of this year and now we are looking at IVIG possibly in a matter of a few weeks. We eliminated we think her sinusitus infection and there may be an underlying myco infection. She has been on high dose Biaxin, 2000 mg a day, and we are not getting better. In some ways, worse.

     

    Is it neccesary to make sure the mycoplasma is killed before IVIG? Dr K seems to say it does not matter and I think Dr T is saying you want to find and kill that infection first. How can IVIG have any lasting benefits if there is still some underlying infection?

     

    Also, we did a 30 steroid taper with 5 really good days in there, the rest declined pretty badly. One doc is considering repeating that soon. I don't understand how a second one could somehow give us lasting change when the 30 day taper left her back at ground zero. Is there an explanation as to how this might work?

     

    Thank you so much!!!

    PANDAS McNuggets w/fry/coke

  8. headed for IVIG

    in PANS / PANDAS (Lyme included)

    Posted

    She has been on Biaxin 500mg 2 x day. Our doc is now going to double the dose, so that will be 2,000 mg a day. He wants to see how she is doing in 14 days, saying the mycoplasma is hard to kill. He also is contemplating another steroid taper, but a more gradual one. I don't understand how for some folks, the steroid taper can be almost a curing thing while for others, the child bounces back to the old symptoms as the steroid tapers down. Why would a second one be worthwhile? I'm not sure.

     

    So far has your first IVIG seemed to have restored your child's health?

     

    Thanks for any help!

    PANDAS McNuggets w/fry/coke

  9. headed for IVIG

    in PANS / PANDAS (Lyme included)

    Posted

    We have not posted a while about our precious daughter 12, as we were trying our doctor's reccomendation of 30 days Biaxin and 30 day prednisone taper. We had a good first week there, but now at the end of the 30 days, the wheels are falling off again. Intrusive thoughts are becoming worse and more debilitating. Some new tics are popping up at night and she previously didn't have much in the tic dept.

     

    Dr K of course says head to IVIG but we are wondering if we need to make sure her myco is killed first. Her sinusitus is gone we think, but Dr K does not seem to think it matters if the underlying infection is killed or not.

     

    We tested negative for lyme, but she DID get her very first sore on her lip which I would presume to be an oral herpes 1 type. (and never been kissed :-) Should we do an anti-viral for this? Recheck myco levels before IVIG?

     

    What else should we do before going to IVIG?????

     

    Thanks so much and blessings to you and our precious children,

     

    PANDAS McNuggets w/fry/coke

  10. Herxing on Biaxin / Steroid Taper?

    in PANS / PANDAS (Lyme included)

    Posted

    With our daughter, both myco igg and igm were elevated and when we did a retest a few weeks later, just the igg was elevated.

     

    I think the pale face is steroid related b/c I saw it on the 5 day burst too and at no other time. I'll keep an eye on her and consider calling doc. She woke up noticably happier :D and now is sliding down......but no pale face yet. :unsure:

     

    Also, steroid brochure says no NAISDs and tell your doctor if child is on a microlide!!

    Well the same doc prescribed both and said do at the same time!

     

    I don't see how I can stop the steroid since she started it yesterday. It is supposed to be dangerous to quit cold turkey, right?

  12. Herxing on Biaxin / Steroid Taper?

    in PANS / PANDAS (Lyme included)

    Posted

    Yesterday we ruled out lyme and today moved forward with the beginning of a 30 day steroid taper and Biaxin 500 mg, 2 x a day. She has mycoplasma and chronic sinusitus. She has had only one of the Biaxin doses for the day so far and one dosage of the prednisone, and she is obviously worse than before. High OCD, gray color in her face, body is sore, falling apart!!!

     

    Can this be herxing or does she have a problem with the steroid? I remember she had big valleys on the a 5 day burst we did a while back, but there were a few good days in the observation period too, which lead Dr K to say she'd be a good candidate for ivig.

     

    Anyone else experience this? Why is her face gray on the steroid? This makes me very nervous. I had such high hopes for starting out with these two "guns" and knowing we are out to kill the myco.

     

    If it is herxing, how long before things might turn around?

     

    Thanks.

    PANDAS McNuggests w/fry/coke

  15. IGENEX results

    in PANS / PANDAS (Lyme included)

    Posted

    I don't know if IGG and IGM are the same b/c hubby has it at his office. It was just faxed over finally. Why is this significant? I'm waiting for him to call me to tell me.

     

    In the meantime, someone posted on the lyme board.....

     

    Both of those positive bands can be indicative of lyme. However, they are not incredibly specific for just lyme, as compared to some other bands, such as bands 31, 34, and 39. Band 41 is the least specific out there, indicating something with a flagella (tail). I read band 58 indicates "heat shock protein", but do not know what that means. It does indicate some infection-related issues which may be lyme or may not be lyme. Sorry, but this is the problem with these tests, they are often not that definitive. Hopefully you have an appointment with a lyme doctor coming up where you can get guidance from a doctor looking at these test results and also other factors (like symptoms).

  21. Famous people with PANDAS? WDYT?

    in PANS / PANDAS (Lyme included)

    Posted

    Martin Luther (as in the Protestant Reformation) was thought to possibly have the scrupolsity form of OCD.

    Also, Leonardo Da Vinci, one of the greatest minds ever, left many writings. One of which was a journal with the same sentance writtten over and over. It sadly went something like this:

     

     

    Tell me if anything I did was worth doing.

    Tell me if anyhting I did was worth doing.

     

    Amazing, given all of his contributions to art and science.

  22. question for Dr K families

    in PANS / PANDAS (Lyme included)

    Posted

    I can totally picture him being warm and kind and funny later, and that is good, but did any of you give a little head's up to your kids? My impression is that he is totally serious when he is doing it and that would freak her out. Given she is already uncomfortable with male doctors and her type of OCD, it's hard for me to feel like a co-conspirator to her further distress when she has already suffered so much.

     

    PANDAS McNuggets w/fry/coke

  23. question for Dr K families

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks everyone for your input. I think my dd would definetly feel threatened by the situation to the point that I don't know if she would relax and trust him over the course of the IVIG. I think she would also question her father and me as to why we would put her through this, given her OCD issues. I guess scruplosity might be it, but it is larger than that. You just don't do ANYTHING that is in her mind morally questionable. It is to the point that the ladies pictures painted on WW2 bomber planes are immodest and need to be covered up in books. Boys and girls have separate roles and boys do not do anything in the girl area (like wear pink or be effeminate) and vice versa. You get the picture.

     

    I just think she would need a heads up or she might have a trust issue with us. kwim?

  24. question for Dr K families

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks P. Mom.

     

    Did you give your child the heads up in any way....like "don't be surprised if he is wacky or jokes around?" Or did you keep mum? It is hard being the mama bear that I am not to give some type of heads up (while at the same time not blowing an experiment). DD is so fragile right now I just can't see pushing her buttons and being complicit. kwim?

     

    Thanks,

    PANDAS McNugetts w/fry/coke

  25. question for Dr K families

    in PANS / PANDAS (Lyme included)

    Posted

    We might be doing IVIG with Dr K after we finally get dd's infection cleared up. We have only had the phone consult so far, so he has not met dd. My question for those families that work with Dr k is about that initial meeting that he has with your child. I have been made aware that it is a bit unconventional. I'm not asking what he does, I got that, but what is the rationale, if you know. Feel free to pm me. With the cost of IVIG likely out of pocket, flying and hotel stays, AND the delicate state of dd, I'd like to understand more before this initial meeting.

     

    Thanks so much,

    PANDAS McNuggets w/fry/coke

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