cmnsahm Posted June 26, 2008 Report Share Posted June 26, 2008 Hi, My son is 7 and diagnosed with ADHD one year ago. He has taken Concerta for one year. On April 1st 2008 he suddenly developed a tic (head jerking back). Took him off Concerta and it gradually waned. Put him back on Concerta because it really helps him at school and in social situations. The tic did not return. Then around May 1st he developed a frequent urination problem. After several weeks, several doctor visits, and one negative rapid strep test, the doctor put him on amoxicillin and it gradually went away. He also started sniffing frequently, which I now realize might be a tic. On May 31st he came down with classic strep throat and took Penicillin VK. This week on June 23 he developed a high fever and stuffy nose, but the rapid strep test was negative. Now today (June 25) he still has fever and his tic has returned! I am so worried......could it be that the rapid strep test was a false negative? (His throat is not sore and he is eating normally.) The pediatrician mentioned PANDAS in passing on June 23 but she said it was not likely he had PANDAS because the strep test was negative. It is very strange to me that the tic returned when he was ill. Also, since he has been ill, he has watched much more TV and played Gameboy much more. Should I pursue more aggressive testing with my pediatrician, and if so, what tests should I ask for? Thank you so much for any advice you can give. Link to comment Share on other sites More sharing options...
dut Posted June 26, 2008 Report Share Posted June 26, 2008 Hello Sorry to hear of your troubles .. here's a link to another topic on this forum that talks about testing for strep http://www.latitudes.org/forums/index.php?showtopic=1053 If for any reason it doesn't work go to the top of this forum and look for the pinned topics. Our daughter has PANDAS and we always ask for a culture rather than a rapid test as we have been told they are more reliable and even the culture can miss it. A nurse practitioner told me the cultures are about 80% accurate. Don't know where she got the figure from tho' Good luck. Link to comment Share on other sites More sharing options...
Pudgeo Posted June 26, 2008 Report Share Posted June 26, 2008 Also if you check out www.webpediatrics.com the Dr specializes in PANDAS and he outlines alot of the criteria for PANDAS. Link to comment Share on other sites More sharing options...
faith Posted June 26, 2008 Report Share Posted June 26, 2008 There are some ADHD meds that can bring out tics in vulnerable kids, however I don't know which ones, Ritalin rings a bell, but you should do some research to see if the Concerta is one of them. PANDAS usually comes with sudden dramatic onset, not just a tic here and there, I believe. Did the tic stop absolutely when on each of the course of antibiotics? If so, than that may be a clue, but even more testing may not definitively conclude that. I would think it not too unusual for kids with adhd to display minor tics too. Does he have any other symptoms such as ocd behaviors or personality changes? That is the pattern you have to look for. But I would look into the meds for side effects first. Faith Link to comment Share on other sites More sharing options...
nurseg Posted June 27, 2008 Report Share Posted June 27, 2008 my son was recently diagnosed with PANDAS. He also is 7 yrs old, and has a neck jerking tic. He started with this tic 2 days after being diagnosed with strep back in March of this year. I agree with the other post about getting a culture versus a rapid strep. I would also ask the pediatrician to do strep titers(ASO and AntiDNAse). We are currently taking Zithromax 250 mg daily, but no real help after 3 wks. His tic is some better from the initial stages, but it still breaks my heart to see him do it. Stick with this site,as it has so much valuable information, and everyone one is so willing to help. Hang in there. Glenda Link to comment Share on other sites More sharing options...
lurker Posted June 27, 2008 Report Share Posted June 27, 2008 Glenda and Dut, I noticed that you can buy the rapid strep tests on the internet in bulk and without a prescription. I know they are only 80% accurate, but I would think they would be wonderful to have around the house for other family members or mandatory once a week/once a month testing at home. I agree they don't take the place of the culture, but you must face some occasional should I? Should I not? situations. Tami Link to comment Share on other sites More sharing options...
nurseg Posted June 27, 2008 Report Share Posted June 27, 2008 Glenda and Dut, I noticed that you can buy the rapid strep tests on the internet in bulk and without a prescription. I know they are only 80% accurate, but I would think they would be wonderful to have around the house for other family members or mandatory once a week/once a month testing at home. I agree they don't take the place of the culture, but you must face some occasional should I? Should I not? situations. Tami Hi Tami, What is the site for the test kits, and do you remember a price/quanity? I have a general practitioner I used to work for that will let me bum a few tests from time to time, but would like to get my own supply. I would like to compare prices with this site you mentioned and the GP's supply company. I agree having the rapid tests on hand would be convenient. My sons pediatrician just always sends off a culture in addition to the rapid strep to prevent a false negative, but his office is an hour away.Thanks! Glenda Link to comment Share on other sites More sharing options...
peglem Posted June 27, 2008 Report Share Posted June 27, 2008 What is the site for the test kits, and do you remember a price/quanity? I have a general practitioner I used to work for that will let me bum a few tests from time to time, but would like to get my own supply. I would like to compare prices with this site you mentioned and the GP's supply company. I agree having the rapid tests on hand would be convenient. My sons pediatrician just always sends off a culture in addition to the rapid strep to prevent a false negative, but his office is an hour away.Thanks!Glenda If you go here, it has three sites that sell them. http://www.kk.org/cooltools/archives/000188.php Link to comment Share on other sites More sharing options...
lurker Posted June 27, 2008 Report Share Posted June 27, 2008 No particular site, and probably a couple bucks each. I think I saw a ton of them on Amazon. The price goes way down if you order in bulk. The great thing about the home test strips is you can torture the whole family with them regularly during strep season . Link to comment Share on other sites More sharing options...
cmnsahm Posted June 27, 2008 Author Report Share Posted June 27, 2008 Thanks to everyone who understands my worries. So, my son's fever is gone and he seems to be feeling fine. But the tic has returned! It is not happening too frequently, just occasionaly throughout the day. Do I go back to my pediatrician for a throat culture (not rapid, since that test was negative) or just wait for it to go away? My pediatrician isn't the most sympathetic and doesn't spend much time with each patient, and I wish I could find a more understanding and knowlegeable one, but that's a different topic. Any advice would be appreciated. Thanks. Link to comment Share on other sites More sharing options...
nurseg Posted June 27, 2008 Report Share Posted June 27, 2008 Thanks to everyone who understands my worries. So, my son's fever is gone and he seems to be feeling fine. But the tic has returned! It is not happening too frequently, just occasionaly throughout the day. Do I go back to my pediatrician for a throat culture (not rapid, since that test was negative) or just wait for it to go away? My pediatrician isn't the most sympathetic and doesn't spend much time with each patient, and I wish I could find a more understanding and knowlegeable one, but that's a different topic. Any advice would be appreciated. Thanks. Hi cmnsahm, I think I would request a culture if I were in you position, I would also ask the pediatrician to do strep titer blood tests. I'm new to this PANDAS diagnoses, but your son sounds like a possible PANDAS. You might also try to google DAN doctors in your area if your pediatrician is less than understanding about these problems. My son and I have been very fortunate to have sympathetic doctors working with us so far. However, it took a short video feed I made a few days after his tic started to convence them all(pediatrician,neurologist, and DAN) my son had a problem, as none of them seemed to notice it at the apt. Hope this helps. Glenda Link to comment Share on other sites More sharing options...
cmnsahm Posted July 3, 2008 Author Report Share Posted July 3, 2008 Update: Went to our pediatrician (but saw his associate who was much more understanding). She wanted to do a throat culture and strep titer test and was totally understanding of our concerns about PANDAS. Today we found out both tests were negative for strep. And, my son's tic has gone away. (I am sure it helps that it is summer vacation and he is not under stress.) So, I am concluding that his "mystery virus" last week just brought on a tic episode. Would this be called "transient tic disorder"? Does anyone have this experience? Thanks for all of your replies and advice. Link to comment Share on other sites More sharing options...
P_Mom Posted July 3, 2008 Report Share Posted July 3, 2008 PANDAS children usually show symptoms, (whether it be tics, ocd, ADHD, behaviors, etc..it is all different in every child)..anyway, PANDAS children normally show symptoms with ANY illness..not just strep, but, strep produces the worst symptoms. Yes, I experience the same thing with my two kids. (PANDAS) Link to comment Share on other sites More sharing options...
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