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Everything posted by DeterminedMomVA

  1. For my 12 year old we used 200 mg in the morning and 200 mf with dinner. In a bad flare, some add a third dose at lunch and move the evening dose to bedtime. Take it with food to avoid stomach problems.
  2. Motrin is a brand name for ibuprofen, which is sometimes called ibuprofen lysine in Europe.
  3. Zoloft was the first psych med we tried. We started Zoloft at 12.5 mg. Increased it to 25 after about 6 weeks. It didn't really work for ds, and may have activated him at 25 mg. he developed tics 1 week after increasing it, which is why we discontinued it cold turkey after a week at 25 mg. the two weeks after discontinuing it were very difficult. At the time he didn't yet have a PANS diagnosis, and it was only in retrospect that we realized he'd been ill 2 weeks before we increased the dose, which may be what caused the tics and ramping up of anxiety/irritability, but at the time we blamed it on the Zoloft.
  4. Thanks for the feedback and insights. I'm not sure I'll ever post good news again because it seems to jinx us. It was a somewhat challenging Thanksgiving break, DS seems to be flaring again, and he woke up this morning with a runny nose and post-nasal drip/cough -- I think he's catching my cold, which is possibly the primary cause of the flare. We'll be doing the IVIG's on Dr. B's recommended schedule -- we need to trust his judgement and we're hoping this IVIG will help nip this flare in the bud. DS has improved tremendously since we began treatment with Dr. B in February, and we'll stay the course and continue praying for remission.
  5. Thanks mwmmom. Interesting that Dr. L did HD IVIG's only 8 weeks apart. I'm so glad to hear your DD is back to 100%! How many IVIG's did you do in total over that time period? Was your DD's pre-IVIG IGG lower than my DS's, or about the same?
  6. Hi, Thank you for the feedback -- the reasoning behind the different approaches is really helpful. We actually did a very high dose with Dr. B -- slightly more than 2g/kg, which is why I think it was so hard on DS. I'm leaning toward scheduling another in 2 months, instead of next week, and then seeing where we're at then. I am a bit afraid that DS is going to get sick and go into an exacerbation before he's experienced as much healing as possible from this first IVIG -- I'm catching a cold right now and I'd absolutely hate it if he caught the cold next week and then fell apart again. But I'm also afraid that the second IVIG may be too much for him (stress-wise and physically) and also cause a decline. I'm just so relieved that the first IVIG seems to have had such a positive effect.
  7. Looking for advice as to whether we should do a second IVIG next week or not? My 11yo PANS DS had his first HD IVIG 7 weeks ago, and his improvement is remarkable. The IVIG was really hard on him, with the migraine headache (which continued off and on for a week+), nausea, exhaustion, for about two weeks afterward -- and he did drink copious amounts of fluids both before and during the IVIG. My typically functioning son had his first onset in January 2011 (not recognized as such at the time, but obvious in retrospect due in part to the handwriting decline, suicide threats, eating restrictions, and intrusive thoughts – the worst of that resolved within a month of onset), then a second, very dramatic onset in September 2011, thought to be sudden onset bipolar/OCD/anxiety/tics, until I finally figured out in Feb 2012 what was going on and he was diagnosed by Dr B and Dr L and began abx for a chronic sinus infection, which resulted in a dramatic improvement at first to 70% of normal, then a slow but up and down improvement to about 80% of normal when he was at his best. When he was about 80% (still with moderate school and social anxiety, tics, hyper, etc, but mostly functioning) we did an IVIG in early October. Seven weeks post-IVIG, he's probably back to 95%, with virtually all anxiety, OCD, irritability just gone. No notable school anxiety in 3 weeks, and his social anxiety is also way, way down -- he's starting to reach out to people again and try to re-establish friendships. His tics are also way down, with only an eye twitch, small facial scrunching and occasional shoulder shrugging tic. He still has moments of being hyper and disorganized (ADHD symptoms), but they are not constant and seem to be when he’s excited about something and/or tired. He even got a fever for one day two weeks ago (turned out to be a cold sore/herpes) and we saw no ramping up of PANS symptoms at all. (Yay!) So, we’re scheduled for another IVIG late next week. I am so thrilled with how well he’s doing. I am hesitant to do another IVIG at this time while we wait and see what further improvements the first one results in – the first one was so stressful and so hard on him physically. I think Dr. K and Dr. L both tend to just do one IVIG, and then wait a while and see what happens. We do our IVIGs with Dr. B, who typically does repeated IVIGs. DS does have an immune deficiency – IGG1 consistently under 600 (normal is >820), serum IGG also below the normal level, (but it’s not really, really low), and no immunity to strep pneumonia despite being fully vax’d as a kid . He’s on treatment doses of both Augmentin (since Feb) and Zithromax (since June), 200 mg of ibuprofen/day, plus assorted probiotics. Can anyone provide insights/advice about what they think we should do? Did anyone stop for a while after one HD IVIG to see how much improvement they could get from it? Did anyone keep going with a second HD IVIG just 8 weeks after a first one that seems to have been really effective?
  8. Statue of Liberty and Ellis Island are still closed due to damage from Hurricane Sandy -- I don't know when they'll re-open, but you should double check before trying to go to one. . Other suggestions sound great!
  9. He was checked for that about 2 months ago in blood work, but not recently. Wouldn't the 10 days of Augmentin he had clear that up, or is something else better for mycoP? Augmentin isn't effective against myco (something about the lack of a cell wall, so amox. and augmentin can't touch myco). Typically zithro or biaxin are the first-line choices against myco. Myco often presents as cold symptoms, and people mistake it as a viral illness. In most people myco is a self-limited illness that the body can rid itself of without antibiotics, but for those with immune problems/pans, it seems important to knock it out immdiately with abx.
  10. This is great. Thank you! I know somewhere I've also seen the rating scale for doctors to use, but I can't find it right now. Do you know where it is and could you also put it on this website, with a link in this thread?
  11. Just PEX, unfortunately. Cigna doesn't cover IVIG. Glad you got to meet another PANDAS mom, and hope things are going smoothly! I PM'd you once...remember, we have the same insurance you have (and an immune def.), and got IVIG covered thru Dr B...the prescription drug benefits are covered thru Caremark.
  12. We give Florastor with abx in the morning. As others said, it's a yeast-based probiotic that can be taken at the same time as abx. DS then takes a culturelle when he gets home from school (about 3:00 ish), then another Augmentin at dinnertime.
  13. Yea!!! I am so very happy for you! Praying it will help and he'll be doing better soon!
  14. Bigmighty, I am smiling from ear-to-ear and and am so very happy for you and your son. Thank you for sharing your story of healing. Hearing others' success stories gives me hope, and, as you said, renewed determination to press on and fight for my child despite what sometimes feel like devastating set-backs. My DS just had his first IVIG last week, and although I'm terrified to say it, he is already doing better than he's done in over a year. I'm braced for a decline, or a sawtooth pattern, but seeing him start to get relief from the symptoms and suffering is huge, and it's so nice to hear your son's really positive experience of healing. Here are some hugs, and a high-five in celebration!
  15. Good luck! We would have been there tomorrow, but they squeezed us in last week instead for DS's first IVIG. DS is still fighting the intermittent headache side effect, unfortunately.
  16. dcmom gave great advice. better and more thorough than mine I'll try to keep you posted about the outcome of our IVIG. Things are up and down right now, as expected.
  17. I would try to keep her on treatment dose abx for an extended period. It sounds like you got a dx from two local doctors, plus Dr. K, so hopefully at least one of your local docs will be helpful and knowledgeable. Take them the information on the IOCDF website if needed. It talks about the possible need for extended antibiotics. You'll need to decide if you want to pursue IVIG or not. It can be very helpful, especially if done early, but it's expensive and not a guarantee. Honestly, we stayed on abx for 8 months, with significant improvement but flares with viral infections. Some report full remission from abx alone. We finally just did IVIG, but don't know how effective it will be for us yet. Sorry the reply is so rushed. Rsponding on my phone. Hang in there. We're struggling to get DS to function at school, too.
  18. One option would be to calll NIH to see if you qualify for the clinical trial? Diagnosis and care from the experts. Otherwise, just keep trying to keep her on abx seems like the best short term option.
  19. I've been told by two PANS docs that if the child is diagnosed relatively early, one IVIG is often enough, along with rapidly responding with abx or other things to subsequent infections. The more exacerbations before diagnosis, the less likely it is that one IVIG will be enough.
  20. Here's an article that explains some of the controversy: http://www.nytimes.com/1996/02/18/nyregion/dispute-expands-over-vision-training.html?pagewanted=all&src=pm My DS learned to read early and very well. He could read picture books fluently, which are sometimes written at a very high level, before Kindergarten. When it was time to move to chapter books, he struggled, and his first grade teacher said that he entered first grade reading above grade level but that he was lazy, resisted reading, and made no progress throughout the year in increasing his reading level. He could read picture books fluently and clearly, but in chapter books he would lose his place, repeat words, lose which line he was reading, etc. I finally figured out it might be a vision problem, and took him to a highly respected developmental optometrist in the area in the summer between 1st and 2nd grade, who diagnosed convergence insufficiency, tracking problems, and something else, despite DS having 20/20 vision. He prescribed glasses, which made an immediate difference in DS's ability to focus and track when reading chapter books, which had smaller font and more closely spaced lines than picture books...suddenly he could read above-grade-level chapter books fluently, too! The developmental optometrist said that he could do vision therapy if we wanted, but that it was expensive and tedious (not at all fun) and that he thought DS would outgrow the problem. Two years later DS stopped wearing glasses to read. He had an eye appt this summer, and still has tracking/convergence problems, but apparently he's learned to compensate for them. The Dr. said that he would prescribe glasses if DS wanted, but DS declined. The controversy arises, I think, because of some unethical optometrists, who prescribe vision therapy even when it may not be needed. It is very expensive and there are mixed reports about how effective it is. We went to a reputable optometrist, and were happy with the outcome.
  21. My DS has the same thing, identified 5 years ago, pre-PANS. We've addressed it with only corrective lenses, and not vision therapy, which can be expensive, tedious, and controversial. You need to see a developmental optometrist for an evaluation. Here's some information: http://www.novavisioncenter.com/custom/12/Developmental_Vision.html
  22. Interesting article on CHB that would be consistent with their close-mindedness with restpect to PANS/PANDAS. It sounds like their autism research agenda is not particularly innovative or useful (PANDAS is mentioned in this article): http://www.ageofautism.com/2009/11/childrens-of-boston-plays-it-safe-with-autism-research.html
  23. Mom withOCD son: Thank you! We are running into the same problem, and those tips are invaluable.
  24. Thanks Norcalmom! That was great info, and just enough info to satisfy my need to know generally what happened at the meeting.
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