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About greeneyes48072

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  1. "Association of schizophrenia and autoimmune diseases: linkage of Danish national registers". The American journal of psychiatry 163 "Immune dysregulation and self-reactivity in schizophrenia: do some cases of schizophrenia have an autoimmune basis?". Immunol. Cell Biol. 83
  2. Yes, both my son and I are allergic to pen....not to mention sulfa and rocephin (family w/keflex)
  3. We did it w/ Dr. K 750mg/kg/day for two days for a total of 1.5g
  4. I highly recommend the IVIG. We did it twice, June 09 and Nov 09. He is still in the healing process, but he actually has near symtptom free days. We never had that prior to the IVIG. In the last two months, only one tic flare up. All other behaivoral and developmental issues subsided after round one, round two was for the continuing tics....and let me say, it was very night and day before/after treatment. We didn't even realize how many behavioral things were linked to the PANDAS until they subsided.
  5. I don't have a lot of time, but wanted to just add, just like people who have mitrovalve problems (heart), these pandas kids also have to take a antibiotic specifically before going to the dentist...just don't know which one or how much...
  6. Dr. K told us 12 weeks. I think the 30 day thing is for people who get IVIG because they have no IG's at all of their own. I also read somewhere that anyone getting IVIG for any reason cannot get vaccinated within 6 months, so it may still have some effects that last that long...hope that helps a little...We are at the 4 month mark, and I emailed Dr. K friday to ask what to do next, since he's still having bad tics...still awaiting a reply...I'm guessing he may be out of country...
  7. I just wanted to add to keep in mind the steroid might have lost it's effectiveness. Dr. K said that is common. When we did a burst earlier this year, it's effects only lasted about a week. Our local peds then allowed us to go back onto it daily in hopes that would help. He again showed a decrease in symptoms when we restarted it, but after another week or two it completely lost its effect.
  8. Some the kids continue to see an elimination of symptoms after antibiotics, so that would be a good step, shop around for a doc that will give him some now. I would also call Dr. K for a phone consult. We did our stuff in person, so I don't know how much he will do by phone, but he takes care of our prescriptions for us too, even though we are in a different state. If you are still trying to confirm PANDAS, another good thing to try is a steroid burst. If it is PANDAS you will normally see a reduction of symptoms on the burst, which would be nice to give your son a break, but keep in mind
  9. I just called the manufacture...it's no problem to get saline before or after. It just can't be mixed with the IG solution, or given in the same line at the same time....phew. EAmom, I didn't comment on the other ?'s before. PEX is not an option for us. The risks are too high for us to consider that. My son weights about 70 lbs. He can do augmentin, so he is on 500mg of azith twice a week Mon/Thurs. Back when he was on it daily, prior to IVIG it was ineffective for his symptoms, but if increasing that could help in conjunction with what the IVIG can do, then I have no objections to t
  10. EAmom, yes Dr K uses Gamunex. What does that mean it is not compatible with saline? Is there another substance they hydrate with via IV? Maybe I got it wrong, Worried Dad, do you know? You did it with Dr. K. too. All I know is that before and after the infusion they gave him fluids via the IV (a bag before and after) to hydrate him. Dr K said it was because the better hydrated he was, the lower the likelyhood of headaches as a side effect. I'm not in the medical field, so maybe it was something else...but now you have me worried...but Dr. K has been doing this nine or ten years, I would
  11. Yes, you were actually one of the first people who contacted me back when we started down this road. It was this forum that really kept me going when all this started. I check in on your posts when I wander in, your story breaks my heart so much. Our trip down this road doesn't even compare to yours. We also had to pre pay, but have rec'd about 75% back so far. We have already had multiple bad experiences with Children's, so we are done with them. Dr. K is the best, and is good about working with us via email, so I am comfortable with that. If we need to do another round, we will try to
  12. I know there have been a lot of new faces since I was on this forum daily. I will copy and paste our history for you guys, since a lot of you were not here back then. Yes he did have the yelling tic prior to IVIG,but it would not start as soon as he woke up...it would develop as the day passed. He did not have any issues prior to his strep infection (though we believe the damage started after his second to last step infection, he had a throat clearing thing that we contributed to allergies, but in hindsight, think it was a minor tic). He is currently on 1000mg of azith weekly, 500mg Mon/5
  13. Both my son and I are prone to strep. I don't often get anything else, just strep. Once or twice a year. It has always been like that for me, even before my son. My mother was the same way...prone to strep.
  14. I must admit, I have not been checking in very often at all. I'm a still drained, so I am just going to copy and paste the update I just sent Dr K and my local ped at the 13 week mark. I still hope that maybe it's just taking longer for him, but my heart breaks that even at this point it has seemed not to work on the tics... Our one week follow up with Dr. Kovacevic: Sunday-tics less, in good mood, only visible tics were a nose sniffle and squeak/asthma like gasp. In good mood, but fairly hyper. Monday-tics even less, only a nose sniffle this day. Still in good mood, still hype
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