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Everything posted by blakes_mom

  1. Tripmom, your son's symptoms sound very similar to my son. He was diagnosed with PANDAS. If you need more information you can look at the website pandasnetwork.
  2. Monica, Just to let you know we never did find a treating pandas doctor when we lived in Minnesota. We ended up traveling to see Dr Roger Kobayashi in Omaha, NE and have been very pleased. My sons symptoms sound very similiar to what you are seeing, especially the sleeve chewing thing.
  3. Try going on pandasnetwork.org and you can search for a pandas physician by state.
  4. I have one son with pandas. Interestingly I have a nephew with eating issues,ADHD and sensory issues and a niece with sudden onset tics. My sister snd sister- law have not been receptive about Pandas so I stopped trying to convince them.
  5. Im guessing your pediatrician ran strep antibody tests. If your pediatrician ruled out pandas because these were normal he is not very knowledgeable about pandas/pans. It it well known that some kids do not get elevated titres with strep and in addition there are other illnesses besides strep that can cause this. The Cunningham panel is also not a definitive test. Chemar we will just have to agree to disagree as I stand by my statement that there is no definitive test for Pandas. My son had an excellent response with antibiotics so our experiences are different. I am happy for anyone that can clear tics all naturally, but if you are not getting the response that you want for your child in my opinion Pandas needs to be considered.
  6. I am curious how they tested for PANDAS as there is no definitive lab test available.
  7. I have to respond because my son had these same exact tics. (Blinking,mouth stretch and looking to the side. These tics started suddenly when he was 5 and it scared the heck out of me. He went on to be diagnosed with PANDAS. Are you familiar with this? Pandasnetwork.org has some great resources. By the way my son is 12 now and tic free. Let me know if I can help in any way. I know exactly how you are feeling right now.
  8. Hi Marty, First off welcome and congratulations for connecting your daughters symptoms with strep so quickly. Also good for you for being persistent about insisting on a strep test. I would highly recommend that you retest after the antibiotic treatment. If your daughter was given plain Amoxicillin it may not be strong enough. Have you checked out pandasnetwork.org site yet,it has a lot of good information.
  9. Wow your symptoms sound very similiar to my son. He also had the eye rolling blinking tics. My son was diagnosed with PANDAS and is currently tic free. Your daughter sounds like it may be pandas. Pandasnetwork.org has some good information and a list of treating physicians by state. I would try to get an appointment with a treating Pandas doctor. My sons tics were cleared with antibiotics long term and a T & A.
  10. I can only answer the first part of your question. I would not rule out pandas just because of a negative throat culture. I would have them repeat the blood tests that would show she had a recent infection. Ask for ASO and anti dnase B. And yes there are many other infections that can cause tics. Pandasnetwork.org has some good information and lists of doctors that can treat PANDAS. My son had this eye rolling tic and several more. He is doing great now after long term antibiotics and a T & A. Let me know if I can help in any way.
  11. Hi Aimee, The only thing I would add is that not many pediatricians are familiar with Pandas. You may have to find a physician that actually knows how to treat Pandas. Let me know if I can help. PS. My son was diagnosed with Pandas and has been tic free for for a year.
  12. We are also from Iowa and see this same immunologist and ENT. You are right they are great. Can you pm me and let me know the name of the neurologist that you saw at Boys Town?
  13. My favorite article to bring with me is on www.ocfoundation.org site. It is an article called sudden and severe onset OCD - practical advice for practitioners and parents. It is a nice article that breaks down all the treatments for pandas and gives specifics about antibiotics. It is written by Michael Jenike MD and Susan Dailey. Good luck at your appointment and be strong.
  14. I am not familiar with the habit reversal therapy, but I noticed in your post that your son has tics along with ocd and anxiety. Have you ever considered a diagnosis of PANDAS instead of TS?
  15. A lot of pediatricians are not familiar with PANDAS but it doesnt hurt to ask on Tuesday. Pandasnetwork.org has some good information on pandas and also a list of treating doctors by state.
  16. First off I understand how stressful it can be when your children have health issues. My son also had a sudden onset of tics. I find it strange that your older son has flare ups of his tics twice a year. Maybe your sons tics could be related to PANDAS. My son was diagnosed with this and antibiotics cleared his tics.
  17. My son 60 lbs has been on zithromax 250 M, W, and F for 2 years. He has not had strep during this time.
  18. Depending on your state you can probably get a religious exemption. I just printed the form off online and had it notarized.
  19. Ds 11 had T & A 1 year ago. We saw immediate resolution of tics 2 days after surgery. We did antibiotics before during and after surgery. He is still on antibiotics for strep prevention and doing incredibly well. He has had a few episodes of tics with ear infections but this was definately a huge help for us.
  20. My sons first 2 episodes of Pandas were cleared with Bicillin CR ( a injectable antibiotic). We saw great results with this that lasted for 2 years. We were unable to convince the new pediatrician for pandas episode # 3 to give it and had a hard time clearing that flare. If you are being offered it I would give it a try. In my opinion it needs to be a larger dose than routinely given.
  21. I dont have any information about l-carnitine but the pediatrician asked about a recent sorethroat because I suspect they were considering a diagnosis of pandas. This is when an infection such a strep throat can cause tics. Pandasnetwork.org can give you some information about this if you are not familiar. My son who is 11 now had a sudden onset of tics and was disgnosed with PANDAS.
  22. Im up for it. I took the quiz and signed up. Cant wait to do some schooling in May.
  23. Our pandas friendly allergist feels that allergies play a role in pandas. He prefers to use allegra for allergies. We also bought an air purifier for ds room that has been helpful.
  24. My son had these same symptoms (head knod and eye rolling at the age of 5. Yes they are tics and in my opinion I would look into the diagnosis of PANDAS. Your son seems to have many symptoms of this including tics,OCD and behavior issues. You can find information about this on the pandas forum or pandasnetwork.org has some good information about this including physicians that can help. Let me know if I can help in any way.
  25. DS 11 Pandas had a tonsilectomy and adenoidectomy last year with resolution of pandas sx.(primarily tics). I am so happy we went through with it. In my opinion I would make sure they also remove adenoids as ENT that did the surgery believes strep was hiding there. Also antibiotics before during and after surgery.
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