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Everything posted by thereishope

  1. I would seek out additional help. Never feel like you've reached a total road block.
  2. I am so sorry. You have every right to feel like you've been punched in the stomach. If parents begin to see signs in siblings, it's natural to want to hold on to that bit of hope that you are just looking to much into it. Now that someone who you respect and has been the rock in stating your dd is not PANDAS, has changed his mind...it just solidfies it and makes it more your reality. Now that you know your daughter has PANDAS as well, you will become even more aware about possible strep around you, and who knows, in turn maybe this will help your son too. You are a great Mom. I know you will help your kids fight this!
  3. Don't forget to rsvp Hope the bumping of this isn't getting annoying...
  4. Here's another for your aresnal:) Meta-analysis of Cephalosporin Versus Penicillin Treatment of Group A Streptococcal Tonsillopharyngitis in Children http://pediatrics.aappublications.org/content/113/4/866.abstract Was your child on prophylactic pen vk? My ped switched my son from prophylactic pen vk to a full dose cephalosporin when strep was in our house. After the treatment dose, we went back to proph pen vk. She said it was best to switch him in the event he did contract it, he should be on a different family of antibiotics. She wanted to err on the side of caution.
  5. This surprises/confuses me too. Do you know what the trigger was in the first exacerbation? Have you taken your child to the ped's for a checkup including a strep test? My child has had 3 strep triggered exacerbations that we were able to overcome and fully remit with antibiotics and time. He has been in remission now for 2 years. The fact that he had 3 strep triggered exacerbations in the past, IMO, does not mean my child is a failure in this. In fact, he has continued to improve and doesn't even react to non-strep triggers anymore. If my child has another exacerbation, I plan on doing full stregth antibiotics again and trying everything else first. Get the abx somewhere. Ped, urgent care. Don't wait. Timing can be very important. Give short term Ibuprofen right now to limit inflammation.
  6. Rapid strep tests run a chance of false negative. In my son's first exacerbation, we had a false negative rapid and got a positive culture a few days later. My husband has gotten a false negative rapid as well. Even if your child is not testing positive for strep now, July was not that far in the past. There are articles citing that it can take months after the strep infection for the autoimmune process to set in. The fact that your son has piano playing movements shoudl really add to your ammo of getting antibiotics. Even if she refuses to give abx in light of the otehr symptoms being present, indications of poissible SC is there and she should treat just in case.
  7. My son takes pen vk 250 twice a day. For my child, he suffered from 3 full blown strep triggered exacerbations. He was not on proph antibiotic during that time. My son can maintain remission without abx, but I feel because he has experienced so many assaults on his brain already and has experienced a lot of suffering even with starting abx within hours of onset 2 and 3, I owe him every precaution I can. If strep is in our house, we do switch his antibiotic to full strength, treatment dose Omnicef as an added precaution. Then switch him back to pen vk after the 10 days of Omnicef.
  8. To me, it sounds like it was strep induced PANDAS that continued to be aggravated by a possible allergy/sensitivity to nightshades or certain foods. Once they eliminated that allergy/sensitivity, recovery was able to finish. Some kids can go on to be symptom free without antibiotics as long as that foundation of a calm immune system is in place to allow the body to heal. So, even though her child is symptom free and can maintain that without any abx, if strep were to hit any part of his body again, she may see a resurfacing of symptoms. Has her child had strep without any PANDAS symptoms (or I should say PANDAS like symptoms since the child does not have a diagnosis)since the original onset?
  9. fyi...This thread will be getting bumped up throughout the month Thank you to everyone that showed interest in the blog so far. We already have 338 hits on it! pandasparentsmeeting.blogspot.com
  10. My son was sudden onset on his 5th birthday. All I can say is what you explain, I could see that happening with him at the time (except for the girl references like braids ) I also have a daughter who just turned 5 in June. She does not act in the ways you describe. You say she has no known strep history. What tests show that? Keep in mind some kids never have rise in titers. Does she has a history of recurring ear infections, bronchitis, etc? Have you seen the thread OCD in young children? http://www.latitudes.org/forums/index.php?showtopic=6153&hl=
  11. Do we want to know why you were researching this? I have to admit that ever since I read an article about a little grl that got a very bad infection that will not clear after years of abx all from cleaning her tank while having a cut on her hand, I cannot clean the fish bowl. My husband does it and I don't let the kids help.
  12. PANDAS Parents Meeting Sponsored in Part by Organic 3, makers of GUTPro™ Custom Probiotics You are invited to an afternoon of inspiration and hope. Please join us in meeting other wonderful parents of PANDAS children. When: Saturday, November 5, 2011 from 12-4pm EST _________________________________________ Where: Hilton Garden Inn Indianapolis Airport 8910 Hatfield Drive Indianapolis, IN 46231 _________________________________________ RSVP: By Friday, October 14, 2011. Please send a RVSP email to the organizers at PandasParentsMeeting@gmail.com. Include if you are sending the RSVP for one or two people along with the names of those attending. A confirmation email of your reserved seat(s) will be sent back. A RSVP is required to attend this event. Space is limited. _________________________________________ Accommodations: A room block has been set aside at Hilton Garden Inn Indianapolis Airport at the rate of $99/night under the name PANDAS Parents Meeting. To secure the discounted rate, please book online at www.tinyurl.com/PandasParentsMeeting or call the hotel at (317) 856-9100 by October 22, 2011. _________________________________________ Questions? Please feel free to contact the organizers Vickie, Sarah, and Tammy at PandasParentsMeeting@gmail.com. _________________________________________ *This is a “parent based” event in which the speakers and attendants will be PANDAS parents.. No doctors or researchers will be speaking or attending this event. pandasparentsmeeting.blogspot.com To view this invitation, please go to http://i905.photobucket.com/albums/ac251/Project_PANDAS/PANDAS%20Parents%20Meeting/PANDASParentsMeetingInvitation.jpg Thank you to Sarah and Tammy for all their help. We are a team and doing this together!
  13. Welcome. I know some of the Michigan parents have a type of local, email chain for support. Are you part of that? If not, I'll track down a contact. I think Worried Dad is part of it and can connect you. As for who is the best doctor...well, I personally don't really say there are experts. There are specialists but being that there are still many unanswered questions in the world of PANDAS, how can one really be an expert? I think going forward, it is important to remember that EACH CHILD IS DIFFERENT. There is no magical equation in which a dx of PANDAS means if you do A or B the child will definitely get better with a guarantee. Have you read some of the useful threads on here yet? If not, check them out... PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Buster's Charting System http://www.latitudes.org/forums/index.php?showtopic=6685&hl=
  14. Are they vaccinating during school hours or just on school property after hours? Ours did that a couple years ago and it depended on the grade level. If they vaccinate during school hours, I wouldn't send my child. On school property after hours, I would send my child as usual.
  15. This isn't what you were looking for but it has a lot of websites linked on it under tools and resources. http://www.ocdeducationstation.org/
  16. How was he over the weekend when at home? Part of wonders if exposure could be playing a role. I know in some states, Mycoplasma Pneumonia is going around like crazy. It doesn't hurt to ask the teacher if the kids in the class are coughing a lot.
  17. Thanks for posting! How I wish that kind of stuff was free to read in its entirety.
  18. But if you gave a dose in the pm and one in the am, how is that doubling up? How is the script written? Omnicef can be written different ways. Sometimes it's written to be taken once a day, sometimes it's a smaller dose taken twice a day. Hope the new timing helps him! My son throws up Azith but it's within minutes of taking it.
  19. How soon after taking the medicine did he throw up and how far apart did you space out the abx?
  20. Welcome, Baylor. A good paper (that doctors should respect also) you might want to read is "...A Way Forward" http://pandasnetwork.org/wp-content/uploads/2010/09/JrnlChildPharma-LeckmanKurlanMurphy.pdf In this paper, it will explain things like "Patients with OCD or tic disorder were more likely than controls to have had a streptococcal infection in the 3 months before onset date, and the risk of OCD or a tic disorder was higher among children with multiple streptococcal infections within 12 months." So, what I would like to know is if you have taken him for another strep test since you started noticing his tics and outbursts? Also, if he has had any otehr infections recently.How is the health of family members? Also, a good article, with an overall good explanation of PANDAS can be found here http://draylawilson.com/strep-infection-associated-with-adhd-and-autism/
  21. How about this theory...August, warmer, maybe more humid...would that be a better breading ground for bacteria? So, the more our climate changes due to greenhouse effects, the more often we see stretches of strep?
  22. No yeast issues...knock on wood. However, maybe it's partly genetic? I've never even had a yeast infection before. Yes, I know...TMI.
  23. Yes, all 3 of my kids now ask when we come home if they need to do hand sanitizer. And I keep a supply of wet wipes in the car too.
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