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mk8898

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  1. I'll find out the medical name and let you know. They told me but I can't seem to remember!!!
  2. Our non PANADAS son had a T&A - we hadn't met our deductible yet, so we had to pay out of pocket. Hospital bill - $4,026 ENT - $800 Anesthesiolgist - $600
  3. JJMOM - Not sure if this is the same medication but it sounds like it. Our 12 year old son (PANDAS) just had this done and he did fine. The warts were around the same area - the beds of his fingernails. The dermatologist froze them first, then injected them with the medication (the injection was painful). The dr. said it would take a couple of treatments. I could tell his skin was starting to peel close to the end of the 3 week mark. We went back again in 3 weeks for another round of freezing and injections ( they said it would at least take 3 rounds for the warts to be gone). Once he received the 2nd round, they started really bad and most of the warts are gone. He goes back Monday for another round and hopefully this will be the last one. I was the same as you . . .as soon as he mentioned "Immune System" my ears perked!!! At the time of the his first wart treatment he was just finishing up a short steriod burst (usually has to do once a year). Dr. said it might just require him to do an extra treatment since steriods suppress the immune system, but that it should be fine. His hands look soo much better! Glad we did it. Good luck! Michelle
  4. Thank you for the responses. My plan is for our Ped (she gave us the original diagnosis) to prepare a medical exemption form/letter. The school district is aware of his condition, so hopefully we won't have any issues.
  5. Our PANDAS son will be entering middle school in the fall. 3 vaccines were added for boys and girls ages 11-19. 2nd Varicella (Chicken Pox), Tdap booster (Pertussis - whooping cough) and MCV4 (Meningococcal conjagate). Any older PANDAS children receive these vaccines yet and if so how did he/she react? He has been exposed to chicken pox and also had the vaccine when he was 1 year of ago. As far as PANADS goes, he is doing very good and hate to risk that. Thanks, Michelle
  6. I've only posted a few times; but read almost daily. Short and sweet, our DS was diagnosed at age 9 (May '09) by our ped with an onset of symptoms following a strep infection and mono. Looking back he showed symptoms starting in K with his first strep infection. He was put on abxs immediately, t&a surgery and did a 5 days of steriods and we drove to Dr. L in August of '09. At that time she put him on Augmentin and a 30 day steriod burst. The healing process was very slow from that point on. His main issue was panic attacks, fear of choking and fatigue and sleep issues. When school started in Aug of 09 we tried, but it just didn't work. He was so fatigued that it took all that he had to get up in the a.m. We pulled him out for that semster and home schooled. As hard as that was for us to do, we knew that his body needed the time to heal. He went back to school Jan.'09. I was soo scared to let him go, he was finally improving and I felt like I was throwing back to the wolfs. The summer was great! He was back to himself!!! Still seen a few signs of PANDAS but it was all managable. He started school again in Aug. 10 by December I was seeing him starting to backslide a little, frequent night terrors (big problem in the past just didn't know that it was PANDAS at the time), emotional, handwriting issues. I called Dr. L and she suggested a 2 week steriod burst. We did the steriod burst and let me tell you he was PERFECT!!!! It warmed my heart to see him so healthy and happy. For the most part we are still there . . .knock on wood. DS is very athletic and has a passion for sports. He plays AAU basketball along with his school ball team. The last several weekends he has metioned that the has had NO PANDA symptoms during his games. With anexity being a huge symptom for him it has very heart breaking watch him fight through the anexity while trying to play a game. DS is still taking Augmentin and will be long term per Dr. L. Dr. L has been great. We live in Indiana, so we are about 12 hours away from her office, so I am grateful for the phone conferences that we have had. All though PANDAS does not seem at this point to be curable I feel like we are able to manage it daily with probitocs, augmentin, omega-3s, multivits, and other meds for his sinus issues and steriods if needed. I know from always reading that storys of healing are not often posted and I felt like I should share our story. Healing is very long and takes time, but we were able to get better. I do feel that our son is a mild case compared to others; but is probably b/c we were able to diagnose and treat immediatly. We have been very blessed with local doctors that have supported and helped us along with way. As much as I hate this disorder, I feel very blessed that God has given us such great people to help us through this journey.
  7. I watched the entire Oprah show today. The child displays alot of PANDA symptoms. Would be intersted in knowing the child's medical history, all they really talked about was his rages and that the he was diagnosed with a sensory disorder and was put on mental medications that didn't really seem to help him. Soo sad, the parents are not even living in the same house b/c of the child's rages.
  8. Looking for a dose of Omega-3 for an 11 year old. Was told by sales lady that the dose I was buying was for a 3 or 4 year old. Of course that was the only kind that he somewhat liked! Looking for something that taste decent and is a strong enough dose. Have also tried a junior capsule, but it was too big for him to swallow. Thanks!!!
  9. Kimballot - thanks for posting the thread. It brought up several questions. Did you do a steriod burst b/c of the sinus infection or b/c of PANDAS? Our 11 yo son was diagnosed in May of 09. We started augmentin and 30 day steriod burst and t&A surgery. He would get strep twice a year which started out as a sinus infection. We see a allergy/immunologist dr. We do daily nose sprays and nasal rinse of needed. He has not had any major sinus issues until the past month or so. We just switched from augmentin to omnicef (only for 10 days). Im wondering if we need to go longer then 10 days on the omnicef before we go back to augmentin?? Is it the steriod that kept him from having any sinus issues??? I awaiting a call in for a short steriod burst from Dr. L. We have seen some PANDA sysmptoms that we haven't seen for a while.
  10. We have been on augmentin for about 14 months (11 year old son). However, we are fighting a sinus infection. Allergy/sinus dr gave us a prescription for omnicef for 10 days. So for 10 days we will not be on augmentin, which makes me nervous b/c he is showing some forms of pandas that we haven't seen in awhile. I understand that the omnicef will get some of the bacteria that the augmentin will not. Has anyone been on omnicef for a short time and switched back to Augmentin?? Thanks so much.
  11. The white spots are a form of eczema. Our daughter, 10 has had eczema since the age of 2. She always had the red itchy spots, but for some reason this summer we noticed the white spots. We took her to the dermatlogists and he prescribed us an ointment (sorry forget the name) and they are gone. He said that once they clear up that the areas would tan with the rest of her body, and they did. Our 11 year old son was diagnosed with PANDAS May of 09 (is doing great) and we have never had any skin issues (knock on wood).
  12. Thank you for the response. He has never been on Azithromycin before; so I'm very nervous of it is strong enough for him. We have tried other anbiotics in the past that did nothing for him.
  13. DS has been on Augmentin since Nov and has been doing GREAT. Actually the last 3 weeks he has shown Zero signs of PANDAS (makes me nervous to say). However, Monday he woke up complaining of stuffy nose and a little sore throat. Went to ped, did all of the normal stuff (strep tests - both negative). She suggested that we take him off the Augmentin and put him on Azithromycin for 5 days since Azithromycin gets some of the infections that Augmentin wont. I spoke to Dr. L and she agreed. I spoke to the ped again today and told her that he still had some of a stuffy nose and she wants to leave him on the Azithromycin for another 5 days. Stuffy nose, sinus stuff always led to strep infections for him. It really makes me nervous him not being on the Augmentin. Augmentin and a steriod burst is what him out of PANDAS. I sent another email to Dr. L, waiting on her respone. Any thoughts ???!!! Thanks, Michelle
  14. We went to the lab at our local hospital. The only issue they had was trying to figure out the proper way to bill for doing the draw. They performed the blood draw, spun it and even packaged it for me. From there I went straight Kinkos to FedEx it back. They were very nice and helpful. Good luck!!!
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