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Everything posted by colleenrn

  1. Ellen- Thanks! I have a call into Dr Beals. My brother's kids see his assistant, Deborah. I am on a cancellation list. Colleen
  2. Good luck in FL. I will pray for you guys! Hang in there. Colleen
  3. Laura- Thanks for the info! I don't feel I can take him off antibiotics. He has not has not had a T&A yet (was planning to do this spring) and even a few days off antibiotics his PANDAS symptoms go through the roof. I have two calls in to two LLMD who are both about 2 1/2 hrs away. My dr wants me to see a dermatologist and already set up an appt. without asking me. I may keep it (next week) just to see if they have seen 5 different rashes at once- maybe they will say, "definitely looks like Lyme rashes"?... I have an ID appt at large University for two weeks away- not sure if I should just see what they say. I feel confident based on his symptoms and the 23,30,41 bands positive he has Lyme. Did he already have it b/c the IgG showed 3 bands? I feel the IgM was way too soon after only 8 days. I am honestly really beginning to wonder if all of my kids could have Lyme and that is what set them up for PANDAS. I nursed all 4 of them for a really long time. Could I have it and gave it to them? I was a PANDAS child, yet I also had a gazillion embedded ticks in my life. Colleen
  4. Thanks for responses! His IgM showed no bands, but the labs were done 8 days after I pulled off the tick. I am trying to get in with a LLMD b/c everyone where I live goes by CDC standards. We have a large teaching hospital here that is excellent in many ways, yet not with Lyme. They strictly follow IDSA guidelines no matter what. My research has made me conclude that 23 is definitely Bb specific. I am concerned that the IgG had 3 pos bands b/c he had embedded ticks last summer too. Has he had it (and possibly any co infections) then got another infection from the tick two weeks ago? Colleen
  5. He had embedded tick on Feb 20 and we drew blood for WB on Feb 28. Is that too soon for the IgM to even be positive? Because his IgG is positive for 23, 30, 41 does that mean he had Lyme already? How soon does IgG turn positive? Weeks, months or years? TIA. Colleen
  6. Just got the WB back from lab corp on my 5 year old that had embedded tick Feb 20th and today is on day 15 of multiple rashes (also on day 11 of ceftin 250mg twice per day- he weighs 47#.)Results are IgA negative IgG reactive for bands 41, 30, and 23. Did a WB 1 1/2 years ago when Dr T ran all his bloodwork on all my kids, but through Quest lab. He was negative at that time for everything. I know band 41 is earliest and my niece with band 41 and 23 is considered positive from her LLMD. My doctor is saying it is negative, I know it is not. Any info please! I am losing it after 11 years of PANDAS ###### with four kids. Colleen
  7. Just got the WB back from lab corp on my 5 year old that had embedded tick Feb 20th and today is on day 15 of multiple rashes (also on day 11 of ceftin 250mg twice per day- he weighs 47#.)Results are IgA negative IgG reactive for bands 41, 30, and 23. Did a WB 1 1/2 years ago when Dr T ran all his bloodwork on all my kids, but through Quest lab. He was negative at that time for everything. I know band 41 is earliest and my niece with band 41 and 23 is considered positive from her LLMD. My doctor is saying it is negative, I know it is not. Any info please! I am losing it after 11 years of PANDAS ###### with four kids. Colleen
  8. He has multiple rashes besides the hives all over his body that come and go. I also am afraid it was way too early to get an accurate WB. He was on 18 days of Omnicef to treat strep (in addition to prophylactic Augmentin for two years and still currently), then embedded tick, then stopped omnicef for 5 days in case it was an allergic reaction, then began Ceftin. Ceftin and Omnicef are both cephalosporins, so if he were allergic they could both act similarly, but he has big lymph nodes in his neck near the tick bite, is acting worse than when he has strep, and has what I am sure was an EM in his axillary region of the same side tick was on. The more I research TBI, the more I am afraid that the multiple different rashes could indicate the Bb has already disseminated and if so, 3 weeks of Ceftin is not enough. I have spent 10 1/2 years trying to figure out PANDAS and have just begun trying to figure out Lyme, so I am not sure at all if what we are doing is right for my little boy. Any input would be greatly appreciated. Colleen
  9. Thanks for replies. They by mistake ran an ELISA instead of WB, but lab said they still have blood and will run WB. Today is day 14 of multiple rashes from head to toe. He remains on Ceftin and his prophylactic augmentin. Very worried mommy here. So unsure if he is correctly being treated. Colleen
  10. He is currently on ceftin 250mg twice per day. He is five and they said he cannot take doxycycline b/c it will stain his permanent teeth. Does the ceftin dose sound right? TIA.
  11. Eight days after removing an embedded tick from my 5 year old son we ran a western blot through Lab corp. The nurse said the results were "normal"- I will see the results tomorrow. Is 8 days too soon to even have anything show up on a WB? He began with hives and 2-3 other, different rashes 3 days after removing the tick. Today is day 12 of rashes. They are less frequent and less severe, but still coming and going several times throughout the day, along with really red ears. He has PANDAS and is acting as he does when he has strep. He was being treated for strep when he got the tick bit and his behavior had started improve. He takes Augmentin 250mg twice a day to help prevent strep. Twelve days prior to removing the tick we added Omnicef twice a day in addition to the augmentin b/c he had a big flareup of PANDAS symptoms (so for 12 days prior to tick bite he was on Aug and Omnicef). Friday he had what we are sure was a big EM in his axillary region on the same side as the tick was (tick was on left neck, EM under left armpit). We stopped the Omnicef that day (LONG story) and he was on no antibiotics for the next 4 days. He had 102-103.5 fever that weekend (other sick family members so it could be from their illness). Took him back on Tues and different NP ran bloodwork and started him on Ceftin 250mg twice a day (he weighs 47 lb.) Does anyone know if it is possible with kids who already have PANDAS and the breach in their BBB to Bb enter the brain faster than other people? TIA. Colleen
  12. Did you see that this article provided a link that takes you to latitudes? It uis when Dr T was talking about co-infections. http://www.latitudes.org/forums/index.php?showtopic=7200 Colleen
  13. I am glad to see they talked about getting a good sample when doing a swab. I am also very happy they said a negative rapid must be followed up with a culture b/c rapids miss 10-15% of strep. BUT, I don't understand why they did not specify that the culture be run for 72 hours. It was Dr Swedo herself who told me to always insist on a full 72 hour culture b/c running it for less will can also result in false negatives. Colleen
  14. I am not trying to scare anyone, but found this out today and it is too close for comfort in many ways as we are in Va. I was wondering if anyone has any other information. The Henrico County (Richmond) Health Department issued a warning that it was an unusual form of strep. http://www.nbc12.com/category/134132/news Colleen
  15. I was wondering if anyone had any sources of info/articles to show to math teachers in trying to explain why two of my kids have had a marked decrease in math skills in the past few weeks- getting strep test today. My understanding is that the inflammation in the basal ganglia causes the dercrease in math skills, but wanted to explain with a little more detail to these teachers. TIA! Colleen
  16. http://www.thedailybeast.com/newsweek/2012/02/12/what-s-really-causing-tourettes-symptoms-at-le-roy-high-school.html This is from the Newsweek article from yesterday. Who disclosed this about the girls. Am I misreading this or did Dr Mechtler disclose this about the girls?? From article: Heather Parker doesn’t get all the talk about stress. “Lydia didn’t even have a test in school the next day,” she says. In fact, things had been looking up ever since 2009, when Parker had finally gotten up the nerve to kick out the kids’ father, who has done time for assaulting his daughter. That was a bad stretch, she acknowledges, but not as bad as what happened to another girl, whose mother had discovered that her boyfriend was secretly filming her daughter undressing in her bedroom. When the mother confronted him, the guy blew his head off, right in front of the girl and her mother. “The more you ask these kids about their lives, the more you find out,” says Mechtler. “But if you ask them if there are stressors in their life they have no idea what you’re talking about.”
  17. I think it is scary that two "top" neurologists, who diagnose movement disorders, would make the statement that these are not real tics b/c they are arrythmic. Tics are arrythmic. Are they getting the terms "repetetive" confused with "rythmic"?? Complex tics are arrythmic and do cross the midline of the body. Same with chorea. I don't get why they are saying a tic needs to be rythmic to be real. Colleen
  18. Mechtler said on this interview, "if people can accept that stress causes ulcers, why can't they beleive it causes this" (meaning conversion disorder). It has been know since the early 80's that it is H. pylori that causes ulcers....not stress. He also said Dr Swedo "unequivocally" agreed with his diagnosis yesterday and that this is not PANDAS. I would like to know if she truly said that. Does she truly think it is conversion disorder? He also said recently more patients (I think he said three) came to DENT with a conversion disorder already given to them by a different neurologist, but that he (Mechtler) determined they actually had tics, "myoclonic" tics and that because of that, do not group them with the other girls he diagnosed with Conversion disorder. SO, are there more kids affected in Leroy with these same tics but this time Mechtler is misdiagnosing them with tics instead of misdiagnosing them with Conversion disorder? Still a misdiagnosis, just mixing it up a little? Myoclonic tics are what I have seen some of the Leroy girls have. Colleen
  19. Yes, Dr. Mechtler, we are passionate about PANDAS and you would be too if your child suffered from PANDAS. I would like to know WHO the Internet is dangerous for? Is it dangerous for doctors like you who stand by their very bogus diagnosis of conversion even though an extremely credible pediatric neurologist/PANDAS specialist is finding infectious causes? Is it dangerous to you because determined parents see through your garbage diagnosis and will find the true cause of why their children are suffering? It is dangerous because you repeatedly violate HIPAA regulations and that can easily be tracked because of ther Internet? Colleen
  20. AND Drs. Lazlo Mechtler and Jennifer McVige will be doing a live chat on buffalonews.com today at 5:30 PM Eastern. Here is the link. http://blogs.buffalonews.com/live/2012/02/live-video-chat-at-530-pm-thursday-with-neurologists-about-le-roy-situation.html
  21. Which nationally recognized PANDAS specialists ruled out PANDAS in the Leroy girls?? The latest and greatest from Mechtler and DENT. He says : Although it is not uncommon to have a difference of opinion by treating physicians, I would respectfully request that the patients be treated not through the mainstream media but by credible experts specializing in the field of movement disorder. http://www.wgrz.com/news/article/154657/37/Doctors-Treating-LeRoy-Students-Disagree-with-PANDAS-Possibility Unbelievable. Colleen
  22. How about sending many copies of this article to Mechler and DENT? Maybe they will wall paper their waiting rooms with it? Great article. Love the end of the article: "I just can't imagine that it's conversion or mass hysteria; that diagnosis doesn't mean much. It's a name people stick on things when they don't understand what's going on. Some psychiatrists like these names, thinking if you give something a name it sometimes helps people, but I find it just confuses the issue." Colleen
  23. I agree with you. My "fully" vaccinated child has had far worse PANDAS symptoms then my other three unvaccinated children. If you search the VAERS and look at kids that received Gardasil along with influenza, and/or Adecel (DTap) and Menactra (menningitis). These girls were at the exact age they would be receiving these vaccines. It seems to me the kids that had these vaccines coadministered has by far the worse reactions. They have barely studied if these vaccines are safe to give together and if you search the literature you will find articles that say, "Coadministration of Gardasil or cervarix with Menactra and Adecel (throw in influenza too) MAY be safe. They don't say, "has been determined safe", But MAY be safe. I still think environmental toxins could play some part b/c apparently so many people in that town suffer from many different weird ailments, but I think vaccines along with strep/myco could be it. Colleen
  24. Could it be that they had PANDAS undiagnosed all along which opened their BBB and then were exposed to the same environmental toxin and the toxin entered their brains? OR could it be that years of exposure to the environmental toxins opened their BBB and then they were exposed to strep or a combination of strep and staph or strep and EBV (the possibilities are endless), which then entered their brains? Could it be both? Colleen
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