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Everything posted by monarchcat

  1. The site looks great! So much has happened to push knowledge and understanding of PANDAS forward in just the past few months. I am amazed and so grateful to those who are working so hard. Thank you.
  2. I'm so happy to read this update! I'm sorry her eye tics are back, but hopefully just for a short time. We haven't done IVIG so I have no experience with it, but it must be a scary time, wondering what's to come next. Come to think of it, that's not so unfamiliar, even without IVIG! LOL It is SO interesting to me that what appeared at first to be a "sudden onset" case turns out, in actuality, to have much deeper roots. I think this is so true about so many PANDAS kids. There may be one instance that sparks a big response and then a diagnosis (or search for a diagnosis) but when you look back there were subtle signs and symptoms from much earlier. Definitely true in our case! Hoping Lauren continues to mend and improve.... btw, love her name - my daughter's name is Lauren as well!
  3. Just FYI, with Fuhlbrigge, we liked him, but he would only prescribe abx as pure prophylaxis against strep (pen vk). In our case it was not nearly enough to stop current PANDAS symptoms and we went back on zith, then 2000mg/day of augmentin XR (prior Rx from a different doctor). I don't know if he is different with others, perhaps cases that appear more severe than ours he will dose higher. I, too, would probably recommend a phone consult Dr. K or Dr. T.
  4. He was on 250mg of azith for a couple months at first and then it seemed to stop working so I panicked and asked my dr. to switch him to augmentin XR. We are in the northeast and there had been talk of macrolide-resistant strains of strep. It may just have been that he needed a higher dose, though. I have a years Rx of augmentin and I guess I feel like if it works, then it may be a less "heavy hitter" than azith (and we always have that to turn to in the future if we need to). Fortunately, he's been taking the augmentin again for a few weeks and been able to swallow them with no problem.
  5. I just want to speak to this since we just recently saw Dr. Fuhlbrigge. I liked him a lot, but yes, he definitely likes to see raised titers. At the time we saw him we only had one ASO titer (negative) from a year ago, but based on clinical history and Cunningham results he does believe ds has PANDAS. However, I feel his treatment approach is too conservative. He prescribed pen vk 500mg/day for a year and said he wants us to do frequent titer tests. If we don't see a measurable rise and fall of titers corresponding to exacerbations, then at the end of a year we would have to think that perhaps it's not PANDAS. He said that the pen vk is the dose used successfully for rheumatic fever patients to prevent strep, and that the ONLY thing the abx are for is to prevent strep. At the time we saw him, ds had been off abx for two weeks and was spiraling downward. We started the pen vk and after four days of getting worse and worse, I finally said, "*&^% this" and put him on 500mg/day of azith that we had from a previous Rx. He started coming back around within 24 hours. After the azith ran out, I put him on the Rx for Augmentin XR 2000mg/day that I had convinced our ped to give me a few months ago. DS had started refusing to take it because of the size of the pills, but after seeing what no/low abx was doing I told him he had absolutely no choice. Like I said, I liked Dr. Fuhlbrigge a lot, but I feel his approach is just too conservative. A low dose of Pen vk just wasn't going to cut it and he doesn't believe that abx should be used for any other reason that basic prophylaxis. I'm sure it works well for some... but not for us. He did talk about IVIG as an option in severe cases, but it wouldn't be a possibility until we had tracked the titer trends, etc for a year.
  6. My son takes the 1000mg augmentin XR and they ARE huge! He is really good about pills but he hates these. He has gagged on them a couple times and that makes it tough. But, what has always worked best for him is to take a big mouthful of juice, push the pill in, swish everything around and then swallow. It's how he takes all his pills and it works for him... I don't know if that's helpful or not, though. I wish I knew of a better way....
  7. ASO titer was first checked 4-5 weeks after a positive strep infection. It was "less than 20". A year later, ASO and Anti-DNaseB were both checked during an exacerbation. ASO was 24 and Anti DNaseB was 74 (both "negative". So, my son seems to be one who, for whatever reason, does not show a titer response. Would love to know why!
  8. We live in a fairly lyme-prevalent area and since the warm weather is almost here to stay, with it comes the constant worry about ticks. Then it struck me, that if DS is already on 2000mg/day of augmentin XR, will he be protected in the event that he did get bitten by an infected deer tick? I always check my kids for ticks in the summer, but deer ticks are so small, that I also know that if they had one on their scalp, under their thick, dark hair, I most likely would never know. DS is 9 and much more likely than my daughter to be traipsing around woodsy/grassy areas (i.e. at camp) so it would be a relief to know that he might have some protection this year due to his ongoing treatment for PANDAS. Anybody know? It seems likely, since early lyme is treated w/ amox, but I don't know what the dosages are, etc.
  9. I CAN NOT believe you just said that! My son says "I like cheese!" all the time! It's completely random. He also says, "I like soup" or "Eat soup!" for absolutely no reason. The irony is that he doesn't like either soup or cheese! LOL
  10. My son, too, will flare up before and after, but is usually tic-free and calm during a fever. In fact, the one really truly defining illness for him that made us look into PANDAS went like this: Suddenly, after not having any tics for months he started ticcing like crazy...major, severe new neck tic that was almost constant. At the same time he said he had a mild sore throat, but he also seemed to have a cold so I didn't think strep. After two days of major ticcing, he very suddenly developed a high fever, vomiting, headache, sore throat. Raging strep. WHILE he was sick his tics went away completely. As he recovered the tics came back and then slowly waned over the next month or so.
  11. Ahh!! This is my son to a tee. I could be 100% agreeing with him and he would STILL argue. Which is why it makes me think compulsion. I'm sorry, but I LOL'd at "You're fired!"
  12. It's become very clear lately that maybe ds DOES in fact have quite a bit of OCD. We've never quite realized that many of his behaviors, etc. are actually OCD in nature, but I'm starting to believe they are. They are not overt OCD-type things like checking, counting, contamination fears, but more in his rigid, inflexible way of thinking, etc. Please tell me if these sound like OCD traits to you: 1. In the winter he WILL NOT wear a coat. He simply refuses. He has a flannel "layer shirt" that he will wear over a t-shirt, and ONE sweatshirt that he is comfortable wearing and that's it. If I tell him to wear a coat he will say, "I look STUPID in a coat!! NO ONE wears coats!! I look ridiculous and stupid!!!" We live in Massachusetts. If you aren't wearing a coat in January you look pretty damn silly, but he does not see that. He TRULY believes what he says. 2. He constantly thinks that his hair looks awful. In the mornings, he makes me wet it down and brush it to make sure nothing is sticking up, but it is never ok. He always thinks it's "puffy" or sticking up and that he looks, "stupid and ridiculous". It doesn't prevent him from getting out the door, but it always puts him in a bad mood. 3. He can be in a good mood, but if something triggers him he will have an episode of total irrationality. I'll give you an example that happened a little while ago: He was in a good mood and went down the basement stairs to play a game. He fell on the stairs and banged his arm and, more than anything I think, scared himself. He started to cry and I went down and tried to hug him, see where it hurt, etc. He wouldn't let me and started saying a very common refrain of, "You don't care, you hate me, why are you being so mean to me? You are so stupid. I hate you! You are the worst. You are SO stupid." No matter what I say or do, he acts as though I am yelling and being mean to him. This is sort of typical pandas-y irrationality, but what makes me think of OCD is that he CAN'T let it go. If I try to end the conversation he will follow me and INSIST on still talking. He HAS to say all the stuff about me being mean, and how much he hates me and how stupid I am, etc. He simply HAS to engage me as much as he can, even though there is nothing productive and no way to resolve it on his terms. Usually this kind of event will only end because I (or his father) get so fed up that we lose our cool and DO yell, and put him in his room, sometimes having to physically put him there. After a while, he'll be ok again - loving and sweet. 4. He is what I have mostly termed "paranoid" about many things. He is convinced that other kids can do everything that he is not allowed to do. For example, if I say his bedtime is 9pm, he is CONVINCED that "everyone else" gets to go to bed much later and cannot be convinced otherwise, even if we were to poll every 9 year old in the state and they all said their bedtimes were 9pm or earlier. Wouldn't matter. These are just a few examples, but the more I think about it the more it seems like it may be OCDish, but I have no real experience with OCD. What do you guys think? What are some good websites for learning more about OCD? BTW, for reference, he's been on abx since August and we've seen improvements, but it's almost like since I've seen improvements in basic mood/behavior now I recognize more of the long-standing, underlying issues that are still there.
  13. Why does your son take the pills instead of the powder? Does he prefer that? I can't imagine asking my son to take 20 more pills a day! He bitches and moans enough about his augmentin XR, vitamins, and the couple of probiotics I make him take now. I'm very intrigued by a powder that I can mix into some juice and just have him drink down, though. I really love the idea of getting LOTS of probiotics into him. I think we are on Augmentin XR for at least the next year.
  14. I know we've talked about probiotics a bunch of times, but I have a couple questions for those who give larger doses. I've been giving DS a mix of culturelle and Jarrowdophilous EPS, totaling about 10 billion cfu a day (I also give him Florastor once a day, but at least that can be taken with antibiotics). I think, though, that I'd like to really get a much higher dose in him. I know some people go as high as a trillion cfu a day, but I'm thinking I'd like to give somewhere around 100 billion. Since he takes augmentin xr twice a day, it's tricky to find a spot to get the probiotics in, so ideally I'd like something I can give once a day, maybe as he walks in from school at 3pm, but without asking him to take a whole bunch of pills. Does anybody use a high-dose probiotic that is easy to take.. maybe one capsule? Or a powder that can be mixed into juice that doesn't taste bad? And if you can, please let me know where you buy/order it from. I worry that with probiotics, if they are not treated carefully you can end up buying dead organisms so I want to be sure to find a reputable place to buy from. Thanks. :-)
  15. This is really, really interesting! My son also doesn't eat meat, but he does like peanut butter (somewhat). I'll have to try this the next time he get's cranky!
  16. Thanks for the recommendation. I just ordered it. My son's pediatrician tested for lyme, and I asked the rheumatologist that we saw whether that testing was adequate and he said "absolutely". I wonder, though. We are in very lyme-prevalent area as well. My son has never had any joint issues. I'm looking forward to reading it.
  17. My son's tics have waxed and waned and haven't seemed to be all that affected by treatment (antibiotics and a 30 day course of steroids). I suspect the steroids may even have made them worse for awhile (we had his first ever vocal tic about 4 weeks post steroids). However, he definitely has PANDAS and the abx make a big difference in mood and behavior. I've read that the tics can be the toughest thing to get rid of. Right now we are in a waning period and he is fairly tic-free after months of various tics of varying intensity. He was off abx for about two weeks and his behavior/mood lability/irritability/irrationality were all awful, but the tics have remained at bay for the moment. So, yes, in my son's case it seems as though abx affects mood and behavior more than it affects the tics.
  18. He was on the azith for about 2 months and we felt that he was starting to backslide. I think I probably just panicked, but we are in the northeast, and I had read that there could be some strains of strep that were resistant to azith around here. At the time he was on 250mg/day. I decided to try the augmentin xr because others had had luck with it. I also thought that between augmentin and azith, the augmentin would be the lesser of two evils for long term use. This is why I've wanted more guidance... lol.. I feel as though I'm flying by the seat of my pants and don't quite know wth I'm doing half the time.
  19. I did a phone consult with Dr. Latimer last fall, but was never able to get in touch with her again (to be fair, though, I stopped trying after several attempts went unanswered...if I really pushed I could have talked with her again). I felt like I couldn't rely on her to guide my son's treatment so I wanted to find someone local. This dr came recommended and I do think he's a good dr. He understands PANDAS, but he is just very conservative about it and believes that abx are for prophylaxis only and therefore a low dose of pen vk should suffice. DS has been sliding downward over the past two weeks (off abx) and a few days on pen were doing nothing to bring him back so last night I said "enough's enough". He refused to take the augmentin XR again, but agreed to take zith. I have a couple weeks worth from a previous Rx (back when he was first diagnosed) and I started him on 500mg/day last night. It's been 24 hours and we've already seen a huge improvement. Tonight was MARKEDLY different than the previous several nights that were getting progressively worse. Tonight there was no rage, anger, irrationality, etc. He laughed his way through his homework. Really, he was TOO giddy and that was a tad worrisome, but it was such an improvement that I'll take what I can get. At bed time he flashed into a few minutes of irrationality and anger, but hopefully that will be short-lived. My plan is to do 2 weeks of zith 500mg/day then try to get him back on the augmentin XR if I can get him to take it again. He had done well with it for a month or so, but then choked on it a couple times and now is scared to take it. It is a huge pill, so I do understand his hesitation.
  20. We saw a PANDAS "specialist" who is a believer in titer levels. He acknowledges that some don't show a titer response, but says that between ASO and Anti-DNase B, 96% of people will show a response. I just got the titer results back from my son's blood draw last thursday and his ASO is <25 (normal range 0-116) and Anti-DNase B is <70 (normal range 0-170). His anti-DNase B had never been checked before and the one time his ASO titer was checked, 4 weeks after a confirmed strep infection, it was <20. Can I hear from you guys who have also not shown titer responses? What do your doctors say? What does it mean? I've read so much here, but my head is spinning lately. Thanks.
  21. My son did a 30 day course of steroids prescribed by Dr. Latimer. Around the second week we noticed extreme irritability, yet it was somehow different than typical PANDAS-y irritability. Also appetite increase (huge), weight gain, puffy face. I think it *may* have helped mood behavior somewhat, but it didn't help tics at all and in fact they got worse after the steroids were done, including his first ever vocal tic about a month after finishing the pred. I don't know if I would do it again unless I felt there were no other choice.
  22. A nutritionist recommended Kirkman Everyday Multivitamins http://www.kirkmanlabs.com/ViewProductDeta...uct_ID@140.aspx (my son can swallow pills) and he takes 2 a day. She also recommended Culturelle, Jarrowdophilous and...something else that I don't recall (didn't buy it because it had the strep strain in it) for probiotics. She said it's a good idea to keep a few on hand (in the fridge) and take a couple everyday, mixing them up a bit so you aren't always taking the same thing every day. I also give my son 2000 iu of vitamin D3 (Carlson brand. Carlson also makes a fabulous D3 drop which I give to my 3 year old) and fish oil (have used Coromega and Barlean's in the past).
  23. We saw an immunologist this week who lists PANDAS as one of his specialties. He seemed extremely smart and well versed in his field and my husband and I both liked him a lot. I was sick of being the PANDAS expert and wanted to see a dr who understands and treats this. I also wanted confirmation of the diagnosis. The dr. seemed very conservative and very cautious about handing out a PANDAS diagnosis, and said that many kids who come through his office, he feels do not turn out to have PANDAS at all. He did, though, conclude that my son has PANDAS, based on history and Cunningham results (with which he was very familiar). Since we got the cunningham results back in september, ds has been on 2 months of azith (250mg/day) and then we switched to augmentin xr (2000mg/day). About 2 weeks ago ds started refusing to take the augmentin as he was developing a gag reflex when trying to swallow them (they are HUGE pills). So, knowing we were going to see this new dr. I said, "Ok, let's stop until we see what the new dr has to say". I was also a bit curious to see what would happen since I was doubting how much effect they were having anyway. Well, ds spiraled down the past week and is worse than we have every seen him in terms of irritability, irrationality, anger, etc., which mostly stems from anxiety. Those antibiotics were chosen by me, and okay'd by our pediatrician (based on my research here, reading what others have had success with). The immunologist said that he does feel that ds has PANDAS and that he wants him on 500mg/day (one dose) of pen vk as a prophylactic, only designed to prevent strep. He said that this is a very successful dose with rheumatic fever patients and that there are NO strains of strep in the US that are pen resistant. The plan is to keep him on the pen vk for a year, and check ASO and Anti-DNase B titers often, especially during an exacerbation. DS has only had ASO titers checked once, 5 weeks after a positive strep infection, and they were <20. While he acknowledged that some kids don't show a rise in titers, he said that something like 96% of patients will show a titer response between ASO and Anti DNase B. At the end of the year we look at the trends and decide where to go from there and whether IVIG or PEX would be warranted. We drew blood yesterday to check both titer levels and I started him on the pen vk. While I am happy to have a plan in place I am concerned about the pen vk. I am willing to give it a try, but it seems like a low dose, especially since it is once a day. Thoughts? Has anyone had success on that dose of pen vk? I swear, the more I learn the less I know. LOL
  24. I hadn't subscribed before, but I think I will. Thanks for the info!
  25. It looks great!! I will definitely spend some time there checking out all the different stuff. My son is almost 9 and is working on a website.. he wants to know where you got the games? He's got some games on his site, but they are pretty much all from addictinggames and he loves the mario and pacman games you have on your site! Keep up the GREAT work!
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