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Everything posted by Kbossman1

  1. I use the strep test kits.....I order them with docsavings.com I think that they are reliable....but I question my positive results. I don't always get a positive. But there have been several times that I got a positive result....so I then took that child to the dr and they said negative. I bought the tests b/c we have 4 kids and it was very expensive to take them all in to rule it out if I only noticed behavior with 1 or 2. My experience has been that I do a much better job at taking the test....and the nurses at the dr office don't give a damn and do a very crapy job. I will tell you that I took my box in with me in June. I had taken my 4 year old in who had the worst breath.....couldn't sleep and was telling me his throat hurt. OF course we had a positive result here at home. The nurse came in and told me he was negative. I showed her my tests and she said "wow....that is the exact test we use here" so I said....then do your test again....it's wrong. Have you ever noticed that they swab the child's throat and then stick the swab back into the stupid wrapper. I told her not to do that....sure enough 5 mins later she came back and his test was positive. This has happened more times that I can count. Here's where it gets really hairy.....my pandas dd has tested positive many times even while on her antibiotics. It may be a very faint positive but it's there. I've read about the rapid test and it's testing or looking for antigens that your body makes when you have strep....I'm guessing the same thing as antibodies. Is this why I could get a faint positive on pandas dd almost 9 out of 10 times if we test her. Is it b/c she continually makes the antibodies....thus causing the PANDAS? She was doing great.....then symptoms started coming back so the other day I tested her and got a completely negative result.....I was actually glad to see a negative result b/c I sure do get alot of positives. If I didn't have these tests.....we would have been told no strep by the dr at least 5 times when they actually did have strep.
  2. I think that having the lyme first....then pandas makes more sense to me...However we have it the other way around. DD7 started with recurrent strep for years. No symptoms. Then all of the sudden at age 5 we had full blown pandas. The pandas symptoms went away each time with antibiotics and we had her tonsils removed. Last April 2010 she had a tick on her neck. I took it off and 3 days later she had a red ring around it. The red ring was very small, like a mosquito bite, but I took her to the ped b/c it was exactly where the tic had been. 9 months later the pandas symptoms where there, we did antibiotics and they went away, but since then the symptoms were coming back every 2 months even if she was still on the abx. Now that we know she has lyme and are treating both we are finally seeing results again. So I think for us it was pandas....then lyme. I have to add that another child in our neighborhood had a tick bite a couple of months ago....then had a "HUGE" bullseye 3 days later. He has been diagnosed with Lyme now too. Obviously we have the dangerous ticks close to home here! Scary! Anyways, thats our version of which came first, the chicken or the egg. I can't wait until there is a better answer oneday to explain the connection!
  3. Ok, I am sitting here trying to figure out which way to go next.....do we pack up the car and take all kiddos out of state to see a dr....to be sure that every dr here in NC can't be that stupid....or can they? Here's what I'm dealing with: mycoplasma tests from labcorp taken 6/20/11 dd6 Igm negative IgG 1659 dd5 IgM 1861 IgG 424 ds4 IgM 987 IgG 562 Me IgM negative IgG 2205 IgM is positive if over 770 IgG normal is 0-100 So, basically you know, and I know, that we all have mycoplasma pnuemoniae.....but so far, 2 of the pediatricans that we've seen don't want to treat. PANDAS dd is not terrible, but not great either, and my hubby and I are guessing it's b/c she lives with all of this freaking mycop?!! Well, any new dr that we go see will probably not want to treat b/c they dont' know us?? I'm not sure which way to go. Must come up with a plan and do something...I guess? The pediatrican says that the kids don't have any symptoms...our specialist is probably a quack, and she suggested that I find a good therapist for myself b/c I'm trying to harm my children with antibiotics....really....that was said....to my face. It all just blows my mind! I'm taking suggestions.....so please, feel free. I am also appalled at the dr's behavior, and I have been drafting some hate mail to send her....but this won't help the situation any. Thanks for any advice!
  4. Can't wait to see what others say about this as well. We had pandas dd7 tested before we went to see Dr. B. She has IgM band 23 positive too. That was the only band positive. We did Igenex....and we are in the same boat....4 kids, medical bills piling up on the kitchen counter....it hurt, but we did it...and holy cow, her test was crazy positive. I'm looking at it now....4 bands were positive IgM and 5 bands positive IgG. Looking back at last September it made sense because she complained of not feeling well, aches and pains all the time. We kept taking her to the dr and they would say she looks fine. The aches and pains were aside from pandas symptoms to me b/c she mainly has OCD....anyways, looking back we see that's probably when the lyme was affecting her. She has a tick bite in April (2010) and in September 2010 was when she started complaining about the aches and pains. She's feeling much better now....after being on meds for severa months. So a couple of weeks ago, for kicks, we tested our whole family (me, hubby, and 3 other kids) w/ the labcorp test. Well, all but one of us came back with this same IgM band 23 positive. I've been thinking the same thing....what does this mean? With dd7 she had a red ring around the tick bite 3 days later....symptoms....it all made sense. Me, hubby, and 2 other kids with Lyme? I'm just not sure. I'm not all for lyme or against it either. If anything....I'm leaning more towards the "for" I guess. I do find it hard to belive that our whole family has been "bitten" though. Just wanted to chyme in and say....hey "who doesn't have IgM 23?" that's what I wanna know?
  5. Wanted to add, 3 of my children all had tonsillectomy on 4/15/11. 2 of them were positive for strep 2 days before surgery and were on Omnicef just before and after the surgery. I know that they had strep at time of surgery, but pathology said the exact same thing Lymphoid Hyperplasia. I don't think that the pathology reports on these are worth anything. Doc said all 3 were covered with pus. I was hoping that the path results would answer some questions for us to, but I don't think that they are very reliable.
  6. I've been reading these threads.....hate I missed this conversation a couple of months ago...but did anyone ever figure out if they had the staph causing positive rapid, or decide if they had strep? My kids have done the same, positive rapid, negative culture. But then again we've had negative rapid, positive culture!? Who knows. Right now I'm concerned about pandas dd on zithromax and omnicef, with positive rapid. I did the rapid at home, and I can't decide if I take her to the dr...which one to go to, b/c we haven't found 1 dr to help us w/ pandas (in NC anyways)yet. Dr. B says that she is on enough mediation and it should take care of it. This is not the answer that I was expecting, so can I get an update on those who posted with children that had positive rapids on abx? Thanks!
  7. Hi to the Lyme forum....I'm kind of new to this one....usually hanging out in the Pandas forum. I'm posting my dd's western blot results from Igenex. Yes, I'm going to find an LLMD, but until we can get into one....I thought I would see if anyone here who has been researching this for a while has any wisdom or insight to add. She is positive by Igenex and CDC standards. What my question is......what do the + signs mean when there is more than 1 of them? Currently she is taking Zithromax and Omnicef once a day. Like I said, next stop will be LLMD, but I don't know how long it will take to get in? Thanks for any info! Nice to meet you here =) IgM Results 18 kDa - 22 kDa - **23-25 kDa ++ 28 kDa - 30 kDa - **31 kDa +++ **34 kDa - **41 kDa + 45 kDa + 58 kDa - 66 kDa - 73 kDa - **83-93 kDa - IgG Results 18 kDa - 22 kDa - **23-25 kDa - 28 kDa - 30 kDa + **31 kDa + **34 kDa IND **39 kDa - **41 kDa ++ 45 kDa + 58 kDa + 66 kDa - 73 kDa - **83-93 kDa -
  8. Emerson, Wow....You are an extremely talented young woman....let me say this again...YOU ARE AN EXTREMELY TALENTED YOUNG WOMAN!!!! I hate that you are going thru this right now.....but what an incredible writer you are!!!!! Please please please write more......We need another good book, you should write you story and send it somewhere. I would read it! Hope you start feeling better soon......wishing for good days for you!
  9. I'm going to google it now, but I wanted to ask my pandas family what this means? Dr. B ordered tests for our whole family....besides the pandas dd. Mycoplasma pneumoniae is supposed to be <100 Dad's results are 270 daughter (age 6) was 823 Obviously this is a reason why pandas dd7 can't get well, but what does this mean for the family members that have these results?? Any advice would be great....we don't get back up to see him again until April 4th. thanks pandas family!!
  10. Well, we know my 7 year old has pandas. We have been noticing small things with my 6 year old since a strep infection in December. I think she has had her first episode, and things are better (it was very mild) but included trip to er for panic attack, several crying spells at night, and even some very funny behavior at school. She seems better now. My 3 yr old son had strep in Feb. causing an exacerbation to start in my 7 year old who was doing so well at the time. Now after steroid taper and being on zithromax for a few weeks, we're seeing improvement, but having alot of ups and downs. My 3 year old has been awful for 2 weeks now. Very aggressive, refusing to follow directions or rules in our home, defiant, overly emotional....fun stuff. I keep thinking that he's getting sick...because sometimes they behave this way when it's coming, but he's fine. Then there's my youngest daughter age 4 who was positive for strep last thrusday. She got a shot of bicillin, and still has all the symptoms. I tested her tues. night 5 full days after bicillin shot and she was still positive. I take her back to dr yesterday and tell them what is going on, but her rapid is negative there. They will culture. The dr and I have a conversation about why she doesn't present like other children with strep. She has the symptoms that she can tell me about; headache, sore throat, stomach pains, but no fever and when dr's look in her throat they tell me it looks fine....but she will test positive for strep. Dr. says her body has the bacteria, she feels the symptoms, but immune system for some reason is not responding or recognizing the problem.....therefore throat is not really red, no fever, etc. I agree with the theory that her immune system doesn't fight it, but her body knows it's there. This makes me wonder if I will have all 4 children with pandas one day. For 3 years I've taken them to the dr multiple times a month for strep tests. Not because they have a fever, but because everyone's behavior gets really wacky, stinky breath, waking up at night, etc... not your typical fever, sore throat issues. The reason that I'm writing this post right now is this: What a week I've had with my poor 4 year old daugher. Wed. my strep test at home is positive....so I take her to the dr and their test is negative....they tell me she is fine. Not believing dr 1 we got to another dr thurs. her test is positive and he gives her shot of bicillin. My test is still positive 5 days later.....we've been to an ENT and ped. neither would give her medicine; ENT says she looks fine and he doesn't see infection, ped says it may still be there but we will have to see what culture says, no meds. My fear is that she will be turning 5 this month......we have a check up to do with vaccines before kindergarten....and in april we are having her tonsils out. Is all of this going to send my loving baby into her first pandas episode....I'm worried that it's very likely! We have to get the tonsils out, but should I wait until summer when she's recovered from that and not sick to do the shots for school? What do the rest of you think or see about the theory that all four kids have "symptoms" but immune system doesn't fight the bacteria?? You know, in January I thought we were going to be done with pandas.....I never imagined that 2 months later I would be so worried about all four kids! :wacko: :wacko: :wacko: :wacko: :wacko:
  11. we have had it rough since January... ds3 got strep and pandas dd 7 went from doing great (95%) to not doing so great. I know for a fact he got rid of the strep....but dd7 continues with the exacerbation. Last week, dd4 tested positive for strep. I have some tests at home, so here's how this went down: Wednesday she said her throat hurt, and she didn't want to swallow. I immediately did a strep test at home....positive. I took her to the dr about 1 hour later....they said negative. I showed the dr my test....he admitted that my test was positive, but he couldn't treat her based on my test....and they would culture it. (never heard from them again) Thursday I get up, take her to another dr, it's positive and we get the bicillin shot so that we can get rid of this asap! Today she says her throat still hurts....and sure enough, she's still positive! Should it be negative by now? Also, I babysit children, so on thursday after dd4 was +, I tested all the kids. Another child (I babysit) was + too. I called mom and said come and get him, go to the dr, and don't come back until he's been on abx for at least 24hrs. She didn't bring him back until monday.....she understands our situation. So, he's on amoxicillin and today I test him again too.....4 days after abx....still +. I'm I scared to death of strep as it is, so needless to say.....this is about to push me over the edge. Pandas dd also had a terrible night tonight......no wonder, she can't get away from it! Anyone know if these kids should be testing negative by now????? Thanks! :blink: :blink:
  12. Here is my question....my dd has pandas. Dr. B in CT has suggested that we do igenex testing for lyme and a complete coinfection panel. My dilema is that the cost for this testing is outrageous, we have no out of network benefits...no reimbursement, etc. I'm trying to decide will it be worth it to just test for the lyme? That's only $200 and I can afford that. Can you actually have a lyme coinfection w/out having lyme? If the lyme is negative....does that mean she probably doesn't have a coinfection? If the lyme comes back positive....THEN we worry about the complete coinfection panel?
  13. Hopefully someone here has experienced the same thing or has some suggestions. We went to see Dr. B last week. He changed dd's meds from Kelflex, to Zithromax, and added 25 day taper of Orapred. I've been so hopefull, but what I'm noticing is strange. For a while, she seems to be feeling better and symptoms vanish. The a few hours later....OCD, anxiety, rages, etc.. all come back. Then later on....symptoms vanish again. I've been a little concerned about the Orapred b/c we think she may have lyme. Her Quest results showed only IgM band 23 present, and we are currently waiting for Igenex results. I've read that steroids may make things worse when there is lyme, so I was nervous about it to begin with. However, steroids have been wonderful with pandas.....so I wanted to listen to Dr. B and give it a try. I also wonder if the zithromax is just not helping.....b/c we've tried, amox. and omnicef....which never did anything. Augmetin made things 10 times worse. Kelflex dramatically improved things, but after 2 months it quit working. Is IVIG next? Maybe it helps the pandas symptoms slowly and they will get less and fewer with time? It's so confusing. Saturday morning I noticed a HUGE change for about 4 hrs....then it was over. Then it came back in the afternoon on Monday and tues.....and then it was over again, I guess you get the picture. Thanks for any advice, or experience.
  14. I'm going to say Diddo! I really enjoyed our appointment, and speaking with a Dr. that knows a whole lot more about this than I do was wonderful! I have (since this post) done some research on S. pnuemoniae and group A strep, and it starts to make my head spin. That's why I trust that he knows what he's doing. Right now I feel very lucky to live only 10hrs away, since there are people coming from other countries. I think that some of us parents on this forum are very skeptical, ok, extremely....and we have every right to be, but I feel as though I could trust this doctor. I will have to update after the next visit and the allergy testing. I think we are also starting to see some good results from the orapred.
  15. Hi Wendy, The other 3 kids have all had strep as much as my pandas dd, and are also asymptomatic, no fevers or the usual symptoms. They all 4 have the strep issues and sinus issues, so I'm going to go ahead and get the T&A done on everyone. We are going thru a rough episode right now, and it's probably b/c one of the kids had strep/scarlet fever a few weeks ago....so I'm hoping to prevent them from bringing home the strep, and also hoping that if we stop the cycle, maybe they won't all end up pandas?
  16. We drove up to CT on tuesday, stayed at the DoubleTree, and had our first visit with Dr. B Wed morning. The man is brilliant and I wanted to share some tidbits that may help some parents who haven't been, or can't get there. He was so good at explaining the way this works, looking over our records, etc. We were in his office for 1.5 hrs. * Says that if he "had" to put a number on it, sibling have about a 40% chance of developing PANDAS * Turns out that dd7, def. pandas, only produces antibodies for 3 out of 14 strains of strep, so her body doesn't even try to protect her from 11 other strains of strep bacteria. * Says we need to do Igenex b/c she tested present for band Ig23 on quest western blot, so now I'm trying to figure that into my disappearing bank account * We are having all family members in the house tested for strep/myco p thru bloodwork. * She is now taking Zithromax, and Orapred (taper) * He explained it so well, that the source of the problem is probably in her sinuses, that's why sometimes the strep test is negative. Says he doesn't like the swab....b/c it's only right about 1/2 the time. He also said the "stinky" breath that I've described is from sinus infections....not strep, however the kids probably have strep sitting in their sinuses....that has not been cleared. We are going to find a good ENT for all 3 other children, and also have tonsils and adnoids removed in all 3. * We are going back in 1 month, and see how things are going, and do some allergy testing. Wanted to update on the visit. Dr. B also says he is now seeing patients come from all over the world, not just the US. So basically I'm lucky I could drive there, and that we live in the same country! Can you imagine if the Dr. that you needed to get to was in India?! Well, I'm off to find a good ENT...(wish me luck, right?) **For those who have done Igenex, what kind of place did you go to get the blood drawn?
  17. Amen! I have not stopped thinking about this little boy since watching the show on Friday. I wrote to the Oprah show too. I also suggested that she do a show on PANDAS! We are getting the word out....but obviously have to keep it up so that kids like this don't slip thru the cracks.
  18. Browneyesmom, I tried to send you a pm, but it says you can't receive any messages....send me your email.
  19. Hi to all, we are going to see Dr. Bouboulis in CT next wed. 2/23 and I wanted to see if anyone else from the forum will be there that day as well.
  20. Yes, the dr is doing a culture too. We've had that happen a couple of times too, where the kids are negative, then they call 2 days later (of course after they've been to school and exposed everyone there too).
  21. I want to echo what TPotter and others have said. Recently, we had our PANDAS doc do an intake on everyone in the family. Found high mycoplasma in 2 of us. We went on azith for a month and we all feel better (I did not even realize how little I had been breathing since having a respiratory infection in October). Plus... PANDAS son is doing much better... fewer "bad" days and those are usually "bad" hours rather than complete bad days. I went to the urgent care last night and got tested for strep.....it's not me. I wish it was so that I would have an answer.....but I don't have strep. Then I took the siblings into the dr this morning....and they were negative too. Now I don't know what to think. Maybe the Kelflex just stopped working? not sure....and unfortunately the dr wants to let her finish this months medicine next week...then wait a week and have her come back in for a strep test/ and bloodwork. I feel like we will be starting all over again....only this time with 2 children instead of 1!!!!!! Eeeekkkkkk!!!!!! I will make my husband go in a get tested next.....if no one has strep, then I guess it's safe to assume that she's having a full blown exacerbation due to the exposure 2 weeks ago.....and maybe we should try a different abx? Thank you for any input
  22. Well, we've had it rough for a couple of weeks. DD 7 pandas has been feeling great for 2 months since starting on Kelflex. She was 95% symptom free! After 2 long years of what seemed to be like one crazy exacerbation. Then our whole house got the flu....and I waited to see what would happen....nothing. I was so relieved. Then my youngest got strep/scarlet fever 2 weeks ago.....and things started coming back. Slowly....I reported to her dr (She is still on the Kelflex twice a day) that we were starting to see behaviors come back, did he think it was just exposure b/c her strep culture was negative. He agreed it was just being exposed to little brother and said give it a week. On the side, our DD6 non pandas went pandas on us at the same time. It stated last month with an anxiety attack which we went to the ER for b/c she couldn't breathe. There was nothing after that until last week. I was called by her teacher twice, once because she fell asleep in class and seemed very depressed, then she had an emotional break down one night last week and sobbed in her bed for an hour. Then on thursday she crawled under her desk at school (she says b/c she thought everyone was laughing at her). We had bloodwork done monday and we are waiting for the results. This child had strep twice in December and possibly in January although the jan. test was negative. Ok, so back to dd7 pandas child. Things are getting worse. I am wondering if she is still being exposed by someone in this house. I do suspect my dd4 may have strep and I'm taking her to the dr this morning. What if she doesn't have it?! Could this still be going on/ getting worse from being exposed 2 weeks ago? If so, how long could it last? What do we do about the Kelflex? Increase it? add something else? The dr actually suggested when she finishes next week, which would be 2.5 months on it, that we stop it....and I told him that would be a huge mistake and I really didn't want to do that! He did say he would call another dr and see if they suggested we keep her on it for a while longer. It's really hard to lose your daughter....but to see her come back and then lose her again! I am very strong and I can guide both daughters through this if I have to.....but hoping that someone else has some wisdom to share about why this is back/ getting worse and how long it could stay? Thanks
  23. Hope it's the best birthday ever! Happy Sweet Sixteen Emerson!!!!!!
  24. Wow! I hadn't thought of this as OCD, but my dd7 is really big about rank order. Mommy do you like this one or this one? ALL DAY LONG She will ask me about pictures, colors of my wallet, catalogs are a joke....I'm sure you understand. Which do you like better, and after that which one do you like 2nd? and so on. She also always has to be first, and asks or assumes that mommy, daddy, grammee, etc. love HER the most. First is BIG in our house....only to dd7 that is!
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