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Everything posted by bronxmom2

  1. My son also struggles with the days of the week and can't remember things like his address, phone number, etc... and he's supposed to be borderline "profoundly gifted." His working memory is not that bad either. He had the whole litany of tests last year when we were trying to figure it out. His IQ scores (and I hope you guys don't think I'm a jerk for sharing these, but it's all so interesting to me) were: Verbal-- 155 Performance-- 145 Working memory-- 120 Processing speed-- 115 He is home schooling, and generally he does work that is 4-5 grade levels above his age but he won't write and he has the attention span of a flea. He can't stay on task at all, unless it's something he's chosen or he's learning on the computer. The PEX did not "fix" any of this... and the IVIG definitely made it worse. But I keep hoping that we're on the cusp of a breakthrough. What's interesting about the mispronunciations is that he appears to be "reading" the word in his mind. You can see his eyes moving.
  2. This may sound strange, but I was just curious whether anyone else's kid has a strange way of mispronouncing everything? My son does this even with words that he pronounced correctly last week, or words that I've correct 100 times The mispronunciations are usually an attempt to phonetically sound out a word... so it seems like he's correctly "reading" the word in his mind but can't remember how to say it. It could just be because he reads so much and gets almost all his information through reading (he is home schooled and reads at least 3 hours a day) His vocabulary is extremely precocious. But the mispronunciations, though cute, are a little odd and they seem to be getting worse. Just curious.
  3. Hi, my son had PEX through Dr. L in late October and like others on this board I saw immediate obvious improvement that restored peace and hope to our household. I would do it again in a second. I had the benefit of hearing about others' experiences with setbacks/relapses following reexposure, so I took the following steps: -- daily antibiotics (which at the time Dr. L was not recommending, she thought prophylactics were enough... she may have changed her procedure) -- removed him from school. By keeping him isolated, we prevented a relapse (except minor behavior changes when exposed to a cold). A few months later we consulted with Dr. Bouboulis (in CT) for IVIG. He did his first IVIG 3 weeks ago and is doing another next Wednesday. The IVIG completely destabilized him. That's been hard to watch. But it's worth it if it leads us to a real cure. Good luck. You can also PM me if you have any questions about the hospital experience. My biggest problem with it was the guilt at consuming that much health care, but then I have a guilt problem. (I am PANDAS too.)
  4. I think he had 1gr/kg-- so 32gr total over about 4 hours. They did give tylenol and benadryl beforehand. The nurse who administers the IVIG is very very nice and very competent. Also we met some of the great PANDAS parents and kids from this forum. It was almost... fun. But no... I have not seen any overall improvement since IVIG, though he is back to where he was before. I still believe I am addressing the underlying issues, which, as Wendy says below... it takes time.
  5. Hi! Yeah, he did a complete immuno workup... failed 13/16 pnuemoccocal titers and also iGg deficient (deficient in iGg1 and IGg4 and total #), which is how we got the IVIG approved. I asked him to do the same workup for me, because I'm one who also believes I had PANDAS... and interestingly I also failed 13/16 pneumoccoal titers and my iGg was at the very very bottom of the normal range. Dr. B and the people in his office are very very nice!
  6. Hi everyone, I have not been posting much lately, though I still check in almost day to see how everyone is doing. My son had PEX in October (through Dr. Latimer), and started monthly IVIG through Dr. B earlier this month. He was in pretty good shape before the IVIG-- I've kept him pretty calm and isolated since the PEX-- we were doing IVIG because I'm convinced it will all come back unless we fix the underlying immune dysfunction, I'd like him to possibly go back to school eventually, etc. Anyway the IVIG definitely made him worse! Day one-- bedridden with a terrible headache. Day two-- many key symptoms were BACK with a vengeance, including clinginess to me, inability to play with friends, anger toward his stepdad, tackling the baby. It was so weird! (The chorea, which for my son was big swooping arm motions, did not come back.) I decided not to panic, because of all the "turning back of pages" stories I have read here and the bizarre flaring of symptoms that follows IVIG. (I decided to even see it as evidence that the IVIG was doing something and that (as though we needed more evidence) this was indeed PANDAS.) Sure enough, a week later he was back to me again, thank god!... (Though I still notice some little things, I am pretty hopeful that they too will flare and fade.) I just wanted to add that this still seems to happen even when PEX has brought a kid back close to baseline, though it was much less severe than what some of you experienced-- I don't want the parents currently pursuing IVIG after PEX to be alarmed when they see their kids get worse again.
  7. Good luck, Peglem! You are a great mom.
  8. This is fun... Bottoms up, everyone! http://pubs.acs.org/doi/pdf/10.1021/jf070352q?cookieSet=1 Antibacterial Activity of Red and White Wine against Oral Streptococci MARIA DAGLIA,§ ADELE PAPETTI,§ PIETRO GRISOLI,† CAMILLA ACETI,§ CESARE DACARRO,† AND GABRIELLA GAZZANI*,§ Department of Pharmaceutical Chemistry and Department of Experimental and Applied Pharmacology, Faculty of Pharmacy, University of Pavia, Via Taramelli 14, 27100 Pavia, Italy Wine contains a number of biologically active compounds with beneficial effects on human health. The antibacterial action of commercial red and white wines against oral streptococci responsible for caries development and against S. pyogenes responsible for pharyngitis was studied. Its postcontact effect against S. mutans was also studied. Both wines displayed activity. The compounds responsible for such activities were succinic, malic, lactic, tartaric, citric, and acetic acid. The synthetic mixtures of the organic acids tested at the concentrations found in wine had greater antibacterial activity than the beverages, indicating that in wine they are inhibited by other components. Wine polyphenols displayed no activity against oral streptococci or S. pyogenes. Findings show that wine is active against oral streptococci and S. pyogenes and suggest that it enhances oral health.
  9. I have experienced an alleviation of psychological symptoms with antibiotics many many times.
  10. I'm so glad you're feeling better. Yes, Dr. L is definitely there for the long haul.
  11. Wow, Buster, you have described my son's issues exactly! My son also has that weird disconnect between reading/writing. I personally did not even seek an IEP or 504-- could not see anything working, given his complicated situation-- and opted to just pull him out of school altogether. I am convinced that all of our children are "2E"-- twice exceptional-- gifted and with issues like what you describe. There is another board that I read sometimes-- the Davidson gifted board-- I bet if you posted this on their 2e forum you might get some good suggestions. http://giftedissues.davidsongifted.org/BB/ (If you don't want to post, I could post for you and let you know if they have any good ideas.) The multiple choice idea is a good one-- my son also loves multiple choice and fill-in-the-blank-- it allows him to show what he knows without all that stress. I buy him lots of Brain Questy-type stuff-- knowledge cards and things like that-- and he's alarmingly good at trivial pursuit. Can you push them on that one? Also can you find out what she "missed" in 2nd and 3rd grades and work with her on it at home, so she doesn't feel stigmatized when removed from the classroom. ? You could get those "What your third grader needs to know" books. (I use those.)
  12. is he an immunologist? Yes, and you should go to him! He WILL find your son's immune deficiency, and give him the IVIG for the Immune Deficiency and not PANDAS.
  13. Not only that...He's insisting on it! What an amazing doctor.
  14. My son did the falling-down thing. We thought he was just being annoying. Poor thing.
  15. When I saw Dr. Bouboulis about 3 weeks ago-- a month post-PEX-- he ordered a whole bunch of bloodwork for my son-- the immunoglobulins and pneumococcal which Latimer had ordered earlier, as well as many others which had never been done on him before-- cardiovascular/lipids, Hematology, lyme, and many others. Anyway, on this new round of bloodwork, he shows a IgG deficiency-- low on IgG 1, IgG 4, and the IgG total. Low enough that Dr. B. is confident that insurance will cover monthly IVIG-- which we are hoping to get started immediately. In addition, his T HELPER cells are LOW and his T SUPPRESSOR cells are HIGH. That is very interesting to me. He also failed 10/14 pneumoccocal, same thing as before. But all the numbers are lower than they were in the original bloodwork, done in September before the PEX. The pneumoccocal serotypes are lower, and the IgGs are lower-- they've gone from low normal to deficient. This is great, for insurance purposes, because we now have the documented deficiency. But it does make me wonder if PEX does render them a little more vulnerable. The other thing is that his ASO number is now.... 145. It was 600 before PEX. I know we debate the relevance of this number, but for my kid I think does correlate to PANDAS symptoms. He is still symptom-free, and I am enjoying his company like crazy... though it's hard not to scrutinize his every move. I personally am convinced that it WILL come back without follow-up IVIG. By the way he has really chapped lips and canker sores. My thoughts are with all of you!
  16. I don't remember about the dosage, but I just wanted to tell you that Omnicef was a very effective antibiotic for us-- really seemed to get to whatever strain of strep was lurking in my son's body. I remember cradling that Omnicef bottle and rushing home with it, knowing subconsciously that relief was on its way... this was before I knew about PANDAS. I just really developed tender feelings for Omnicef, if you know what I mean. Good luck, I hope it helps your family.
  17. Sorry, I thought we were just making a list so I deliberately left mine short. I answered, "fixation on violent images and thoughts." For some of us, our children never exhibit the classic signs we all look for (and which I myself exhibited as a little girl)-- lining things up, counting, guilty feelings, confessing. (Most recently, I think Tantrums describes her son this way.) My son is aggressively messy and, at the worst of it, he seemed to have no conscience at all. He was all violent drive. I would never have considered him OCD at all, until someone (Trifiletti?) explained to me that his fixation on violent fantasies (which he would act out in play repeatedly, much to my alarm) was actually a manifestation of OCD. Oh, and here was another one someone mentioned once, which really opened my eyes: -- constantly insists on new toys.
  18. Here is an interesting article from today's NY Times about the ethics of plasma collection. I am not posting this to be alarmist. The good news, buried in this article, is that the plasma supply is going up. (It's because so many people are now poor enough to regularly sell plasma.) http://www.nytimes.com/2009/12/06/business...amp;_r=1&hp
  19. fixation on violent images and thoughts (esp. in boys)
  20. Hi dcmom, I feel like I'm becoming an annoying prosthelytizer for homeschooling (and I know from personal experience how irritating that can be)... but I can't help feeling that Julia's immune system is under siege in the school setting. I can't tell you what a relief it is not send my son into the school. Of course he always had major behavior problems in school too, and attentional issues, so it's also a big relief not to feel sick all day wondering what I'll find at 2:45. I know I can't keep him isolated like this forever, but for now it's a price I am totally willing to pay. We are 5 weeks post-PEX and my son is still doing well and getting better. I live in fear, though. Every time he whines, complains, or tickles his little brother I brace myself. His attention is still not good. He is still pretty obsessive, too, but he gets obsessed with what we are studying (we're having some trouble moving on from the revolutionary war)-- it feels totally different. Before the PEX he was going to a very very dark place. He is cooperative and full of joy and love. We saw Dr. L last week and he has no chorea. (BTW she now agrees that our kids need long-term full-strength abs... that the strep has not been eradicated. I know when I met her before the PEX she believed my son was strep-free.) I am trying to move ahead with IVIG now, before he has another exacerbation. I personally don't see the advantage of waiting.
  21. I really can't say. I was fascinated by the idea that it could suppress the bad T Cells, since PEX does nothing to address that. It's not hurting, and my instinct is to include it every day in our routine. We are over a month past-PEX and still doing fine. I did run it by the immunologist, who said it wasn't dangerous but probably wouldn't help. (He wants to do IVIG to retrain those TCells.) If you want, I can pass along specific studies to him about what it really does. (I was a little vague in my explanation.) I'm seeing him next week.
  22. Hi Kim, I've been giving my son NAG since his Plasma exchange.
  23. Whenever's she's called me back, it's been at least 7pm. (Even when we had a 4pm phone consult.) Which tells me she is working very long days.
  24. I'm so sorry you guys are going through this! I think you should consult with Dr. Bouboulis in Connecticut. He seems to understand PANDAS and the immune system better than anyone I've talked to.
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