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Everything posted by bigmighty

  1. DS is 17 1/2. His worst exacerbation was at ages 12/13. Two IVIGs at NIH got him back very briefly, after which he immediately got strep and had another exacerbation that was actually worse. Finally got him back, for the most part, after middle school. He functions at a fairly high level, but there is a continuous need to monitor symptoms and mess about with antibiotics and steroids every 8-10 weeks each time he is exposed to someone with strep and PANDAS symptoms start to re-emerge (OCD/paranoia/lying/refusal to eat/social challenges). Biggest challenge is that he barely eats even when th
  2. DS's doc insists that he have a single room, also. DS has a CVID and and IgA deficiency so very little immune function. Glad to hear that this seems to be an acceptable solution for your DS. Not yet sure how mine feels about it. Thanks for the report. We have been planning on regular deliveries of nutrition shakes and such. Seems like we're on the right track. Hope we get to a place where DS is not strep reactive anymore also. Congrats to your son for making the transition!! Very happy for you.
  3. Thanks so much for posting this. DS is a senior in HS this year and just applying to schools. Does your DS still become clearly symptomatic when in the presence of strep and, if yes, what plans does he have in place for recognizing the onset and seeking treatment? Our biggest concern is that DS doesn't seem to be aware that he's begun a exacerbation. Our other major concern is that DS doesn't ever feel hunger and has few preferred (tolerated) foods. He is an extremely low weight highly selective eater who stops eating altogether when in the presence of strep. We can easily see him droppi
  4. Wow. Thanks for the report. Can't wait to hear how the antibiotics and steroids go.
  5. Same thing happened w/DS. Initially consulted therapist about anxiety. She called our Ped and asked them to send lab slip. They did and tests were all negative. Assumed no strep connection. Finally got to PANS-friendly doc six weeks later. She did throat culture, which was positive. Ran labs again same day and they all came back negative. If you have a throat culture now, I am guessing it still may be positive for strep in spite of neg labs.
  6. My son had no elevated labs whatsoever, even though the labs were taken the same day his throat culture popped positive for strep. Did you guys actually do a throat culture, or just the labs for your DS?
  7. My son has PANDAS and, while I have never been diagnosed, I develop tics when near someone w/strep and also have had some of the issues you mention. Strangely, when my doc suggested I take garlic supplements (nature's bounty odorless garlic softgels), my restroom urge frequency disappeared almost completely. Every time I forget to take the garlic, it comes right back. I was not getting any restful sleep with all of the night waking, so that has been a huge blessing. Here's a link to the garlic - it's more expensive here than at my local grocery store though. It's carried almost everywhere
  8. You are describing my child's early childhood exactly. He has PANDAS - diagnosed at age 12 at the time of his 1st (extremely) major exacerbation. It took 17 1/2 months to get him into remission. Definitely see a PANS-friendly doc, get a throat culture and some labs and discuss your concerns now. Better to be on top of possible strep immediately after it emerges than to go down the rabbit hole we ended up falling into.
  9. Are you doing round-the-clock ibuprofen when not on steroids? Even NIH gave us permission to do that w/DS for a full month, and it really helped. But if it were my kid and I knew IV steroids would bring him back, I'd be out seeking someone willing to administer, and who would let you fill prescrips for antibiotics and steroids that you can start at will if you see symptoms re-emerge.
  10. Oh, sweetie. I'm so sorry you have not found someone to help yet. Have you thought about emailing Beth Maloney, author of Saving Sammy? I know she was just in the UK for a PANDAS conference within the past year. Maybe someone in her camp of volunteers will answer your email and can steer you toward the right medical professional. Keep trying. Your gut instincts are correct. Glad you aren't letting the docs talk you out of them. Sending virtual hugs.
  11. Cannot believe they are not automatically medicating with pre-and post-antibiotics. What did you decide? Did you proceed to schedule or are you still waiting to see if you can line things up medication-wise first?
  12. While you are figuring things out and finding the right doc, consider trying ibuprofen or some other anti-inflammatory (I believe some use turmeric). With my DS, there are clear issues caused by the brain inflammation that can remain well after a flare. Give ibuprofen a few times per day for about four or five days - the same as you would do if he had the flu or a fever - and see if the behavioral symptoms reduce in intensity.
  13. I recall reading that this UK neuro psychologist had written about Tourette Syndrome and PANDAS - Maybe he can help? Dr Davide Martino – Neuro – London http://www.medlink.com/medlinkcontent.asp http://www.bmihealthcare.co.uk/consultant/consultantdetails?p_name=Davide-Martino&p_id=50294
  14. Have you tried steroid taper at any point? DS did augmentin 875 for a few months, then added a three week steroid taper. He started seeing positive changes during steroid use, but lost them again after he was done w/the prednisone. Doc said to bear with him. Two months after the steroids, DS went into remission. Doc said once infection is fully gone, brain inflammation needs to die down for symptom abatement and this takes time.
  15. Thanks. At least we caught it immediately and suspected what it was we were dealing with. Four years of PANDAS/CVID has taught us vigilance if nothing else...
  16. They ran a ton of labs yesterday. Will run more once they get these back and see what direction the info leads. Looks very much like he has rheumatic fever. Ugh. Can this kind not ever catch a break? He spent three years tapering off of antibiotics. Now he may need penicillin shots in his hip every three weeks for the next five years, plus he has heart damage....
  17. Urgent care says he has "right bundle branch block" and possible rheumatic fever. Referred us to cardiologist and immunologist.
  18. DS has had a 102 temp for past 48 hrs and now has extremely swollen wrists. He has been in remission from PANDAS and did not get any resurgence of OCD with this illness, so we assumed flu or viral infection. Now I am wondering. Starting Augmentin 875 in addition to ibuprofen, rest, and fluids. Should I be worried about rheumatic fever? Have your children ever experienced it and, if yes, what does it "look" like? thanks.
  19. My son had IVIG over a period of two days. Six weeks later, he had IVIG again, also over a period of two days. Dose was 2g/kg. One week after the 2nd round of IVIG, he began to improve.
  20. If you are having IVIG tomorrow, start consuming extra liquids now! You will need about 5 oz of water or juice every 90 minutes beginning now and straight through the weekend. Otherwise, you'll have an overwhelming headache for days.
  21. We will be in Brighton this summer and it would be great to know the name of someone we could contact in the event of a true emergency. Jewel, if you wouldn't mind sending me a PM, I would certainly appreciate it. Many thanks in advance.
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