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colleenrn

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Everything posted by colleenrn

  1. Two of my four children have had a tonsillectomy and adenoidectomy, with good results. My 12 1/2 year old daughter had a T & A just after she turned 6 (her PANDAS symptoms abruptly began just after she turned 5). After about 9 months of repeated strep (whenever she stopped antibiotics) I started to pursue whether or not to get the T & A. I had seen Dr. Swedo and her partner at the time, Lisa Snyder, a few months prior. At the time they did not encourage a T & A, and that summer I called and talked with Dr. Snyder, who tried her best to talk me out of getting it. I am a nurse and I could NOT understand why they were so adamant about not doing it. My pediatric ENT, based on # of strep infections and by seeing her large tonsils, agreed it was warranted. When he removed them, he commented that they were the size of a large male and no amount of antibiotics could have gotten into the crypts and pits in her tonsils. Post T & A, she was symptom free/strep free for a solid 18 months, at which time she woke up one morning with the tics and OCD back. NO physical symptoms, neg rapid, culture grew positive and my doctor wqas floored b/c he did not think she had strep based on no physical symptoms. That was 4-5 years ago. We have ups and downs. I am confident it was the right decision. I feel I made a HUGE MISTAKE by not doing antibiotics prophylactically afetr the T and A. At the time, I did not know what I know now and would never have left her off antibiotics. I had my second child evaluated by the same ENT b/c starting around age 2-3, he snored a lot and whenever he was sick, especially with strep, he had sleep apnea. The sleep apnea worsened as his strep infections were more frequent. Just after turning 5 he had a T & A. Again, the doc said his tonsils were huge and very cryptic. I think he has faired better for 2 reasons: 1. he is not vaccinated except fort polio and 2. he had his tonsils and adenoids removed sooner than his siter. My 3rd child has large tonsils, no sleep apnea, but snoring getting worse. His strep started prior to age two. It is my plan, soon, to have him evaluated b/c he also has huge tonsils. I am not suggesting that all PANDAS children have T & A's BUT if your child has a similiar situation to mine, it is something to seriously consider. When the tonsils are cryptic (full of holes and pits), the antibiotics get rid of enough strep, but not all. When you stop the antibiotic, the little bit of strep that is left just recolonizes, causuing another infection. At the time, we never tried Zithromax, which is much better at penetrating through to the strep. Prior to the T and A, Amoxicillin, penicillin, Augmentin and Keflex stopped working. Out of desparation i begged to put her on Clindamycin, which helped, but even with that, I could see the strep stuff coming back. This is why I believe that Amoxicillin, penicillin are not the right choices for PANDAS kids, b/c it does not penetrate through to the strep. Strep can also hide in the adenoids, which are very hard to culture. I would start by going to a pediatric ENT and having an evaluation. Please let me know if I can answer any questions about my children's T and A. Good luck! Colleen
  2. guy123- I had a chemistry professor in college who was srtudying the effects of alum, especially in deoderants. He told our class that IF we knew what he knew, we would never use "regular" deoderant again. You can get it without alum, like in Tom's of Maine deoderant. Colleen
  3. Michele, I can't help with info on school services, but I wanted to comment that my children do not act at school like they act at home. Even when my daughter's tics are at their worst, she some how keeps them to a minimum at school, then lets loose at home. My two boys who are hyper, emotional, throwing fits, not paying attention, etc... at home, behave perfectly at school. People always comment when I tell them my kids have PANDAS, "gosh, I would have never known that by watching them" Colleen
  4. dcmom, What antibiotic is your daughter taking daily? Thanks! Colleen
  5. Yes, IMO, it could be PANDAS. My daughter was diagnosed at age 5 with PANDAS, BUT looking back, I now realize I saw some symptoms as early as 2-3. My now 8 yo, I saw symptoms around age 4. My 6 yo, I saw symptoms around age 3, AND my 2 1/2 yo, I have seen signs since he was 2. Had my 1st child NOT been diagnosed with PANDAS, I would not know that was what was going on with my other three kids. It sounds like your daughter's symptoms all worsened in Oct 08? It could be that she was exposed to strep at that time. A lot of PANDAS kids do not have any physical symptoms, so they don't get tested for strep b/c it does not seem like they have it, when they really do. It is often that the parents DO know more about this than the physicians b/c a lot of physicians don't even know PANDAS exists. I would start with a throat culture (and ask them to grow it out for 72 hrs.) and then go from there. There is a wealth of info on this forum about pANDAS and lots of parents ready to help new parents. Hang in there! Colleen
  6. What is the best dose of Omegas for children in treating ADD/ADHD? I know that I have read it must be a higher dose than what the "normal" supplement dose is, but I can't find out a dose. Thanks! Colleen
  7. When I say NOT a rapid strep test, I mean to say don't ever just rely on that. It's fine to do a rapid, but a lot of physicians do not follow up with a culture when the rapid comes back negative, so a lot of people are walking around with strep b/c it goes untreated. Colleen
  8. I agree 100% with EAMom's post about getting a throat culture (NOT rapid) ASAP. Did any of your physicians even mention this as a possibility. It should be standard protocol with ANY child's onset of tics or OCD or anxiety to do a culture and the fact that so many doctors overlook this is scary! Good luck! Colleen
  9. I would suggest trying to get in touch with Dr. Susan Swedo at NIMH. She is a very caring doctor who saw my daughter in 2002 and who very promptly answered a recent email I sent her. She will know who specializes in PANDAS in this area. She is in Maryland. The fact that you saw a dramatic change in your daughter with the Amoxicillin points towards PANDAS,in my opinion. It seems like the combo of Augmentin and Zithromax should be doing the trick, but this is such a tricky disorder, that I wonder if, given the initial response to Amoxicillin, would a trial of Clindamycin be warranted. Prior to removing my daughter's adenoids and tonsils, she went through a list of antibiotics. The three months prior to the surgery, each antibiotic she was taking stopped working. I asked my doctor, who complied, to put her on Clindamycin. Within a day, her symptoms were cut in half, after a week, she was back to "normal". Once she had her tonsils and adenoids removed and the ENT said they were so large and cryptic (full of holes/pits) it was evident that no matter what antibiotic or dose of antibiotic, the strep was "hiding" in the crypts and would recolonize whenever she did not have enough antibiotic. Do you know if your daughter has large tonsils or cryptic tonsils? I am not suggesting all PANDAS children get a tonsillectomy/adenoidectomy, but in my daughter's case it was very helpful. Just thinking out loud, trying to put every possibility out there, b/c PANDAS is SO confusing/tricky/hard to get a handle on! Good luck! Colleen
  10. Two of my children have had their tonsils and adenoids removed and did much better (no strep) for over a year. I would definitely recommend giving antibiotics before surgery, during/after surgery (IV antibiotics) and then keeping him on antibiotics at a treatment dose for a while (? a few weeks?), then switching to a prophylactic dose. If your child has strep harboring in their tonsils or the tonsils are very large, it could help, BUT you have to keep the antibiotics on board. Are they planning on removing the adenoids? Colleen
  11. Could it be that your child has a bacterial infection and the steroids made it worse? Steroids suppress the immune system allowing the bacteria to proliferate. Read about mycoplasma pneumonia. Dr. K says it triggers PANDAS and given your child's symptoms (ESPECIALLY the croupy cough) I am wondering if that is maybe what is going on. Was the doctor saying that if strep were the trigger, that there is nothing you can do about the strep?? Colleen
  12. Augmentin is just Amoxicillin that has clavulanate potassium (a B- lactamase inhibitor) added to it. β-lactamase inhibitors are often given in combination with penicillins to tackle the problem of the resistance caused by the presence of β-lactamases from bacterial cells. In my experience with my PANDAS children, Amoxicillin does not work with their strep, but they did respond INITIALLY to Augmentin. That did not work so well after a while though. You may want to also consider cephalosporins such as Keflex or Omniseph. Colleen
  13. This is probably NOT what you are dealing with, but I thought I would mention it anyway. If your child has mononucleosis AND takes Amoxicillin, they will most likely get a bad rash. It usually looks like hives and is head to toe. Colleen
  14. I am sorry to hear about your son. My 12 yo daughter has been on Zithromax 250mg for more than 3 months and was diagnosed yesterday with an ear infection (she also has a bad cold). I was really surprised that she got an ear infedtion while on Zith, but my doctor said we could either up the Zith dose to 500mg/day OR give her Keflex for 10 days WHILE she still takes the Zithromax. She said she was comfortable with her being on both for only 10 days and that it is done a lot, so that is what we decided to do. Do you think Dr. K would try adding either Keflex or another cephalosporin OR increase his Zithromax dose? Just a thought. Good luck. Colleen
  15. I just wanted to add that someone dr's offices take 2 swabs, hold them together, swab the throat with both at the same time, then do a rapid on one and send out the other. This is NOT the best way to get a really good sample. It's best if they only swab with one at a time. Make sure they get both tonsils and not just one. Colleen
  16. Lacy, I think it is disgraceful the wat that neurologist acted towards you. You are right to be upset! BTW, I live in central Va (Charlottesville). Have you ever seen any doctors in Charlottesville? Colleen
  17. Thanks Caryn for your response! It turns out my daughter has an ear infection while ON Zithromax 250mg/day I would think that dose would be enough to prevent ear infections if it is supposed to prevent strep. So frustrating! My NP agreed my son's rash looked like it could be a strep rash and we did a 72 hour culture. Colleen
  18. I would start by studying and learning anything you can about PANDAS, b/c if you do that, chances are you will have more info than a lot of docs which you will need to figure out what's best for your son. I would at the very least have frequent throat cultures. If the rapid EVER comes back negative, have them do a 72 hour culture. You can ask them to send it as an upper respiratory culture (same swab, they just run the test differently). If they run just a regular throat culture, they will not be looking for strep other than strep A. Another thing you may want to start researching is the use of prophylactic antibiotics. I am really glad your son responded so quickly! Good luck! Colleen
  19. My 12 yo daughter has had ear pain on and off since October. Today it is much worse and ALSO her PANDAS symptoms have worsened. I am freaking out because she is currently on 250 mg of Zithromax each day, and I even bumped it up 3 days ago to 500mg/day (she weighs 120-125 lb.) Has anyone experienced this with their PANDAS children? I have an apt. in 2 hours for her. I am at a loss as to what antibiotic I should try if she got an ear infection on all that Zithromax.. Also, If I can tag this other question on this same thread- my 2 year old has what looks to me to possibly be a strep rash on his belly. SAME rash he had in Oct. when he tested positive for strep B (not strep A) and same behavioral symptoms as in Oct. (screaming a lot more than usual, throwing major fits, AND peridic dilated puplis). With all of my 4 kids, this is the earliest I have seen possible PANDAS symptoms. I am wondering if ANYONE has experience with PANDAS symptoms in a 2 year old (he just turned 2 1/2). Any help or comments or suggestions would be greatly appreciated. This really stinks! Colleen
  20. I wonder how Dr. Sanker can make that "claim" when a lot of PANDAS children only exhibit anxiety and/or OCD and NOT tics. In the beginning, my daughter did not have tics, but OCD symptoms. When are these physicians going to admit they are clueless about PANDAS and just start studying the families that have it so they can learn about it? No one claims that rheumatic fever or SC are not "real" and it is virtually the same process. Colleen
  21. This link talks about OC spectrum disorders, which includes tourette's, OCD, eating disorders, etc... http://www.brainphysics.com/spectrum.php I have always said that PANDAS is so incredibly tricky, not just b/c of the strep issues, but b/c there is such a HUGE range of symptoms that children experience. I never have thought of it as a spectrum, but would the fact that there is such a range make it a spectrum disorder? I think you are very wise to explore all the avenues that you are! Colleen
  22. My daughter told me should would try her hardest at school or in public settings to not tic, but when she wouold get home she would relax and then we would see the tics. Lots of peolpe have told me they never noticed her tics until I pointed them out and they really tried to pay attention to them. I think that is probably common with some kids.
  23. Lisa, I am glad your son is doing better on the Amoxicillin. Your doctor is incorrect when he said it would not have dissipated so soon. PANDAS kids oftern get markedly better within a few days of antibiotics- sometimes after two doses. I am not discouraging you from seeing a neurologist, but they often don't "beleive" in PANDAS and want to medicate the tics. A child with PANDAS does not need to exhibit OCD. There is a huge range of symptoms as you know (ADD, ADHD, OCD, tics,anxiety, etc..) Some PANDAS kids have only tics. You mentioned that he tested positive for strep at age 4, but you did not see symptoms. Were there any ohter changes you noted when he had strep at 4? Changes in urinary patterns, changes in sleep patterns, any type of anxiety, including not wanting to be away from you, rashes? Can you describe what the excema looks like and where it is located on his body? My children get rashes that look similar to excema, but after years of studying their skin and when they get the rashes, it is definitely linked to their strep. In fact my youngest had what one NP told me was excema, but when I showed it to another nurse practioner, she said it was definitely a scarlatinaform (scarlet fever) rash. He tested positive for Group B strep (NOT A which still has me very confused) and the rash completely disappeared with 2 days of Zithromax. Just weondering if your son's excema could be strep related. One of my sons gets a "lump" in the side of his neck when he has strep. What is your plan for when he finished the 10 days of Amox? Good luck! Colleen
  24. This is not good news for any of us with children with PANDAS. just wanted to post this FYI. Colleen http://www.dailymail.co.uk/health/article-...ded-decade.html
  25. I think you should have seen improvement by now on the Amoxicillin. Perhaps he would be willing to switch her to Augmentin (Amoxicillin with clavulanate potassium added for better effectivenes). The first year of my daughter's PANDAS we used Amoxicillin and she would test positive for strep within days of completing a ten day course. Just a thought. Colleen
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