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poetmom last won the day on October 23 2015

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  1. My ds developed a sensitive scalp and couldn't stand the feel of water on his head (this is a lingering symptom though to a lesser degree) though it doesn't seem he was quite as bad as that, it was very traumatic for both of us and a big, big challenge. In his case, I would definitely say it made a big, negative difference after he'd had strep (in throat or ear) and antibodies were in high gear.
  2. Thanks Nancy. I was looking for some feedback from someone with an older PANDAS child to tell me if they are also seeing a difference. Nice to know you're also seeing less dramatic responses. This is the first time I haven't noticed any response to having strep (or being exposed) so **fingers crossed**. I am definitely grateful, but cautiously optimistic. Do they really outgrow it? That would be a miracle. It's so strange to be able to talk to him about it now. I talked to his teacher today and he said, "so you told her to look for if I started acting looney?" HA He's got a great attitude about it and said, "Maybe this time I won't have ANY PANDAS!" What a trooper! He is on Augmentin for an extended period just to be sure and then will be cultured afterward in the hopes that we've gotten rid of it entirely and it doesn't just ... migrate, which has happened in the past. Augmentin has always been our most successful abx of choice.
  3. I haven't been on this forum in a long, long time, but today feel the need to peek in.... because my little PANDAS man has strep. Ugh. I'm posting on this string because it has the whole crazy background of his original story (in case anyone cares to reference it). He is now 9, turning 10 in March. I know he has residuals...things that have never really gone away, fears, etc. But I'm the only one that sees it. In fact, some of it really gets on people's nerves because they just don't get it. Example: this past summer we went to the beach. His extreme fear of water, which remains, had me on edge, but he was determined to boogie-board with his sisters. And he did cautiously, fretfully, screaming demanding instructions on how to help him, but successfully (oh, the patience it sometimes takes!) right up until the wave knocked me down, him off the board, and I couldn't get up fast enough to keep him above water. I braced myself for the fit he would throw. He was mad at me but saw the wave had clobbered me too, so he marched out of the ocean and sat on the sand...for about 5 minutes when a miraculous change occurred and he decided the ocean was pretty cool and he wasn't going to let one big wave spoil the fun. I digress... I am the sole existing witness to the full extent of his illness (we've moved, so his doctors are new, his teachers are new, my ex is remarried, and his siblings don't have clear memories... in fact, rereading the story I was surprised at details even I have forgotten). And now he has strep. First symptoms night before last, confirmed yesterday at the doc, abs started last night. AMAZING NEWS: no PANDAS symptoms So..... here is my reason for checking in today....... I am grateful. Yes, eternally grateful. I am also terrified, confused, hopeful and waiting. IS HE CURED??? HAS HE OUTGROWN IT??? Did we just dodge a bullet and are incredibly lucky? Is it really just a particular strain and this isn't it? OR..... should I brace myself because even though in the past he just had to be exposed (not actually contract) strep and he would react immediately, is it possible the worst is still yet to come and I've made the call all too early that we are in the clear? What's your experience with a positive strep test and NO PANDAS REACTION? Thanks.
  4. We see Dr. Mazade, an Infectious Disease Spec in Cooks Children's in Ft. Worth. If you search for his name on the forum, you'll see multiple threads where I've commented on him. Sorry I don't have time to expand right now, but on my way out of town, saw this, and wanted to get you an answer. Hope that helps!
  5. I believe my final count on the proxy votes I sent you was 90. I hope to get more during my trip this week and will send them to you as I get them as I won't have ability to vote next week at all. I have also been given permission this morning to post this to the homeschool board I'm on...so I'm hoping it goes viral on homeschool boards!
  6. Stephanie - Just a thought: I learned with his sensory sensitivities that taking him to the beauty salon and letting them wash his hair was sometimes worth the expense and nerves. It still scared him/bothered him, but because it was a stranger, he wouldn't scream and fight. He preferred it because it was over quicker and at the worst of his sensory issues, it limited the amount of his body that had water running over it. I found it a relief not having to fight him.
  7. Thanks everyone for sharing that with me. With all the challenging days, I think it's importance to recognize the good days too! :-)
  8. So my ds who was last week officially declared "in remission" has very few remaining symptoms. I can pick them out. Some of you might recognize them. But someone on the street would never notice. The one big, huge change that remains a constant struggle is his fear of water. As an infant he loved baths, at 9 mos we took swimming lessons and he loved them, and as a toddler he loved the pool. But with PANDAS he suddenly developed a combination of sensory issues with the feel of the water flowing across his skin (particularly his scalp) and a virtual terror of water itself. While the sensory issues seemed to have resolved, the fear of water remains quite strong. It is real struggle...okay, let's be honest...it's a freaking nightmare to wash his hair!! He's afraid the water will be too hot, too cold, too hard, too fast, get in his eyes, get in his ears (which I used to think were due to ear infections and sensitivity of his ears, but he's actually afraid of what the water will DO in his ears and not being able to get it back out). He loved to go to the pool last summer but spent a large portion of the time cautiously avoiding splashes and watching everyone else play or clinging to me. He loves water rides and begs to go on them, though they scare him to death and the moment we're on them he wants OFF (always too late). SO... in an effort to continue to help him move beyond this fear, I signed him up for private swim lessons and he went to the first one today. SUCCESS. He spent the entire afternoon grilling me with questions on "what are they going to do?" "am I going to have to go in the water?" "I can only hang onto the wall for 10 minutes" "what happens if water gets in my eyes?" I promised goggles (didn't use), ear plugs (didn't use), constant supervision, etc. He declared 10x "Nope, I've changed my mind. I don't want swim lessons." But we went. I have to tell you, he shook the whole half hour. He was excited to be there and smiled and even BLEW BUBBLES!! He refused to do some things and got mad at one point at the instructor gently trying to convince him one too many times to put his hands on his head. He shook like a leaf out of fear, uncontrollably, but never wanted to get out and enthusiastically continued. He wasn't cold, but imagine how a child would shake if swimming in water that was 40 degrees...you get the idea. BUT HE DID IT. And he's proud of himself and can't wait to go back. It was all I could do not to cry for joy for him right there in front of all these strangers who could never imagine why I was crying, because at 6, he clearly recognized his accomplishment. So hope continues and I had to share. It was a good day today.
  9. Ibuprofen is an anti-inflammatory - if the theory is correct that PANDAS is caused (or in part caused) by inflammation of the basil ganglia, then an anti-inflammatory would reduce inflammation and improve symptoms. I'm just thinking out loud here, but I would think in order for it to have any significant affect, there would have to be some other combination (like zith or augmentin) to combat the CAUSE of the inflammation or relief of symptoms would be nil, mild and/or brief.
  10. http://www.wfaa.com/news/A-side-effect-of-...p-93004404.html Very, very cool. I can only imagine one of you is behind this... KUDOS!! The page links to the Pepsi/PANDAS vote page. Wish they'd said more about it, but take what you can get.
  11. There's a funny little post on Skip's page tonight that reads: Audrey Grams I finally figured out how to work the third way to vote and now you will get even more from Phi Theta Kappa food Pantry So I thought... well, I know I can log onto the site and vote, and I know I can ALSO log on to my Facebook page and vote.... so it occurs to me, i wonder if i add a widget to a website if I can vote a THIRD time. I don't have my own website or blog and the code doesn't work on MySpace. Anyone out there who can test?
  12. Our XP: my son is always calm on fever - i think it has more to do with the fever making him feel worn out though (general malaise) than actually calming the PANDAS symptoms. As for fever on abx - my ds had 9 ear infections during the first year of PANDAS and was on and off abx until they put him on them for an extended period trying to specifically treat PANDAS symptoms. he had a consistent fever that I really don't think had much to do with a virus or the ear infection because ear infections weren't tied to them, he didn't always get a fever with them, and he could have a fever even without any other symptoms of illness. During that period, even in the absence of an ear infection, he would often have a low grade fever (99-100) for as much as two weeks at a time without break, then stop for a few days, then show back up and I'd take him to the doc and they'd find....nothing.... We used a combination of Tylenol/IB as described above. I think now knowing about the theory of PANDAS causing inflammation, I'd tend more toward IB for it's anti-inflammatory properties though. it was kind of frightning because he'd have no infections of any sort or even a low grade fever and (aside from PANDAS tics/OCD, etc) be fine, then in a span of 15 minutes spike to 103. At one point, the doc tested his blood stat for liver function, blood infection, and we even looked at things like leukemia (i count my blessings with PANDAS, frankly) it was not until we actually got the PANDAS under control and were clearly on the path to moving away from a catastrophic episode that the fevers disappeared as mysteriously as they had come. For the record, i know some kids tend towards high/fast fever spikes; my ds previous to PANDAS was never one to spike a high fever or spike one fast. fevers prior to PANDAS were never a great concern and the PANDAS fevers were entirely out of character. Although he's had fever a couple times since, it's also been more like pre-PANDAS so I personally tend to count it as one of his PANDAS symptoms and not a secondary, unrelated symptom.
  13. It's been horrendously slow today. I keep getting messages from folks not on my proxy list who are voting themselves and complaining about the site. A couple decided to add themselves to my proxy list afterall because they didn't want to deal with it anymore... not good.... I suggest you close your browser and try again. Seems to help a *little* today.
  14. Laughing at myself...thought you guys might need a chuckle... So...you know you're "hardcore" (some of my friends might call me "shameless") when you even manage to convince the air conditioner salesman you just paid to vote for PANDAS...and when you have him so convinced he offers to put it up on his Facebook page BEFORE you have a chance to tell him there's actually an app!! ha ha ha yeah, I'm THAT mom. :-)
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