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Everything posted by Pezmom

  1. Hi. I used to be active on the PANDAS discussion board years ago, but am back now. My three children ages 10, 7, 5 all have been diagnosed with PANDAS and are on prophylactic antibiotics. My oldest also received monthly IVIG for approximately a year and a half. The oldest and youngest have been diagnosed with Lyme as well and I just received my positive Lyme test this week. The children and I also have MTHFR gene mutation and the two oldest have a diagnosis of autism as well as many other comorbid conditions. I am going through a contentious divorce with their father who is fighting me a
  2. There have been so many, but the all time most stupid has come from my mother on several occasions, "All you have to do is pray and he'll be healed." Seriously wish I had thought of that in the last 4 years of meltdowns, anger, aggression, suicidal thoughts (my child's), 2 1/2 years of antibiotics, 2 years of IVIG, countless doctor consultations and hundreds of hours of research, not to mention watching self-esteen suffer and his brain capacity be annihalated. Now that my other 2 have high numbers on their Cunningham tests and the entire family is on antibiotics, I'll figure out and finally s
  3. I haven't posted in over a year. We lost our son to PANDAS just over 2 years ago, but were able to bring him back 80% with Ceftin and Valcyclovir on a daily basis as well as biofilm protocol and monthly IVIG. For awhile, we were able to push the IVIG out to every 7 - 8 weeks, then symptoms would reoccur and we had to go back to every 4 weeks. A few months ago, we made the mistake of changing his antibiotic and lost him again for a couple of weeks. We switched back to the Ceftin, but haven't been able to recover. His anxiety and violent reactions are now so bad, we must place him on a medi
  4. Brian - Is your plan an individual or group plan? If it's a group plan, you can have your HR Benefits person call the insurance company directly or they can have your broker or consultant call. That should get you almost immediate results. So sorry you haven't been reimbursed yet and that the exacerbations keep happening. Same situation here with symptoms coming back, except we are much better off than we were before the first IVIG. When it seems like it's going to be a rough day, we give our son Ibuprofin and it calms things down. It's definitely a problem with inflammation here. Keep
  5. We received coverage for 6 rounds. It is through a major carrier and we have very comprehensive coverage.
  6. So was that 2 gm/kg dosing? Buster It was close to that, yes, over the 2 day period. With Dr. K's protocol, it would have been closer to 40 grams total for the two days.
  7. We did a steroid burst 3 months prior to the IVIG and saw benefits, though not profoundly so. The changes post IVIG were definitely greater than those after the steroid burst.
  8. Hi. We've done IVIG for our 7 year old son. It has helped alleviate many of the symptoms PANDAS caused, but has not completely taken care of the problem. We definitely saw improvement (miraculously so at first) and then had an exacerbation a couple months after the first IVIG. I'm glad we did it as it has definitely helped, but I wish I had gone into it with a clearer idea that it was going to give us benefits, not necessarily a complete cure. Our son had TS, tics, OCD, anxiety, ADHD, rages, meltdowns, and all kinds of other PANDAS fall-out. We are only a little less than 4 months out fr
  9. And then there is my son who was on a gluten-free diet (also casein, corn, and soy-free) as well as antifungals, probiotics and glutathione for years before PANDAS knocked him out. We also feel it's not just PANDAS, but could be PITAND for him as any infection seems to trigger this, not just strep. Pat - we haven't tried Kefir as I asssumed it was out based on casein and he's got a coconut sensitivity as well. I will look into it. Maybe it's time to change his probiotics as well. I'm so frustrated by all of this (as I know you all are) and just want to figure it out. We've been treating
  10. Dr. John Green in Oregon City, OR may be the nearest doc for you. I've heard from a couple of people lately that Dr. Stephen Glass, a well-respected Pediatric Neurologist in Woodinville may be starting to diagnosis some PANDAS patients. He's at least open minded.
  11. Our son weighs 55 pounds and takes 250 mg of Ceftin 2 times per day. He was originally diagnosed with PANDAS at age 5 and our doctor would prescribe a 5 day course of Zithro whenever we had a PANDAS episode (these were very mild with slight tics and impulsivity - I didn't know enough about PANDAS at that point to know what else to look for). Last summer, he was on Zithro at least a couple of times and the PANDAS stuff wasn't going away. So, our doctor had him on Zithro every three days with no change, and then upped it to every day. While he was on the daily dose of Zithro, our worst PANDA
  12. We were actually fortunate (an understatement, I know!) to have insurance coverage for 6 rounds. Our doctor simply sent in our son's lab results and the insurance company approved it. We decided to take advantage of the full course of treatment to try to completely knock PANDAS out. Diana P. left me a message the other day asking for my son's lab info in an effort to determine why our insurance company provided coverage. I just haven't had a chance to pull out his hefty medical file to dig for that info yet. I'm still going to get it to her. I obviously don't want to rock the boat with
  13. Even though this didn't strike a cord with others, I thought I would still post an update. We saw the developmental Opthamologist today. Since PANDAS, our son's vision has changed from 20/20 to 20/60, he's gone from farsighted to nearsighted, and his eyes are no longer working together. He had previously finished vision therapy (over a year ago) and now we have to start back to doing it again. An interesting twist is that his PANDAS symptoms are much improved the last couple of days (amazingly so) and he announced this morning that his vision wasn't blurry today. So, even on a good day wh
  14. We've been slowly brining our son back from a severe bout with PANDAS in the Fall. He's now had 4 rounds of IVIG and has been on Ceftin daily since September. As I posted previously, he was approximately 75% recovered from the injury when we had another smaller round of PANDAS a month ago. Things are improving again, but as the smoke clears I'm noticing other changes I hadn't noticed previously. Specifically to do with a very negative attitude and vision changes. He has become a very negative person (at 7). Everything "sucks" and he automatically goes into a negative tirade when any
  15. Jena - how is he doing now? I just wanted to say that I have found something that has made a world of difference in my daughter. It's as simple as giving her just 3 or 4 drops of oregano oil (dissolved in juice) morning and night. It's more effective if they could tolerate it under the tongue, but that's asking a lot of little ones. You would probably want to continue it for several months to really see a lot of benefits, but I have already seen some in a short time - it is a very potent anti-bacterial (as much as some antibiotics but without causing resistant strains of bacteria to form)
  16. I just sent the link to the PANDAS TV segment done a couple of weeks ago to the Oprah show asking them to do a story. If others write as well, we may get them to listen and do a story. You can share your story idea at https://www.oprah.com/ord/plugform.jsp?plugId=216. Thanks. Jena
  17. EAMon - Thanks for pushing me to post an update. I've been meaning too, but it has been a pretty difficult week at our house. Our guy is doing better, but still impaired from where he was even last week. I think what happened was a combination of factors (although it's pure conjecture at this point). We had previously had our son on Disodium EDTA to help the antibiotic work and also on Amantadine as an anti-viral (with some potential benefit for ADHD behaviors as well). We backed the EDTA off to one per day a few weeks ago and also dropped the Amantadine to one based on concern over
  18. Sorry that I've been away from the forum for a bit. Enjoyed some time away with my daughter visiting family. Ty's LD was not originally detected through the Alisa or WB test. The initial testing was conducted by Quest Diagnostics (the insurance specified lab). The initial round of testing was reluctantly consented to by the first pediatrician, who we had seen for 16 years, 13 of those with my son - 16 with my daughter. The initial pediatrician wanted to treat his OCD behaviors with an anti anxiety medication without running any tests. Due to the rapid onset of his symptoms, my husba
  19. We've been watching our son's brain recover over the past 7 months. After the worst of his PANDAS episodes in September, numbers looked like a foreign language to him and I had to re-teach him basic math facts over and over, he had ADHD behaviors for the first time and couldn't sit to learn or focus, his handwriting was horrible and he would resist even writing a couple of words, he would sit in front of legos wanting to build, but not being able to put his thoughts into any structures. Previously, he had tested in the gifted range in all areas and in November, his math was average and his
  20. Does he not want to do it or is it truly more difficult for him which is causing his resistance? We run into that with our son too. When he has a PANDAS episode, his handwriting and ability to process numbers tanks and he shows major resistance to school work because he knows it's more difficult for him. And, it takes awhile for his brain to recover and be able to process and learn and write again. We've been home schooling this whole year because of PANDAS and are now looking at starting our own "school" or at least homeschool coop for next year to accomodate the changes PANDAS has brough
  21. Hi Linda. Thanks. Dr. K consulted, but didn't do the IVIG. The first round was 25 grams two days in a row for a total of 50 grams. My son is 55 lbs. So, it was a little higher than Dr. K would have done. The second and third rounds were just 25 grams each. We saw huge gains with the first round, some with the second, and the third round was just 10 days ago and now this has happened. As far as I know, we aren't fighting any bugs in the house and our son doesn't have any sign of illness.
  22. We have done three rounds of IVIG and our son has been on antibiotics since September. Late last week, I could see the PANDAS slipping back and now today he's got full-blown Tourette's again, the impulsivity is back, ADHD symptoms worsening. No increase in OCD and anxiety yet, but I'm worried. Any advice? Our doctor was concerned about having him on the oral disodium EDTA any longer and we stopped that 3 weeks ago. It's plausible that taking the EDTA away allowed the biofilm to protect the bacteria from the antibiotic or has the Ceftin lost it's potency just like the Zithro did in the p
  23. Our son has been on LDN (in a lotion form) for 2 years. When we first started it, we noticed an almost immediate improvement in his ability to interact with people. I remember him walking in on Easter and asking my sister-in-law how her concert had been. He had never before shown that kind of interest in someone's life. We were using it as a part of his DAN! biomedical autism treatment. It's still a part of his treatment today.
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