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Ashlynsmom

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  1. ENT ordered meds during and immediatly after surgery--not a PANDAS doc.I really don't know why we took her off Zith maybe because she was doing well and has abd cramping from too many antibiotics already...just picked up Zith after other antibiotics were complete.
  2. DD12 had T&A July 27--had been assymptomatic since May (only a few things creeping in every now and again) Severe symptoms including sneezing tic for months. 500mg Azithr. 3x per week since Dec. Stopped Azith day before surgery and she was given iv Rocephin during proceedure. After surgery she was given omnicef 2xper day x 10 days; nystatin oral suspension 3x per day x 7 days;and pain meds. Azith was started back after 2 weeks. We requested tonsils sent off for path ENT very surprised with following: Staphylococcus Aureus(heavy), Streptococcus Viridans (moderate). They also did sensitivity studies and I have antibiotics her strain where sensitive to--interesting because I would not have seen this except for the fact that I requested path report. blood test repeated 8weeks post surgery and believe it or not the ASO was unchanged and the AntiDnaise was higher that ever before--still mostly assymptomatic. Immunologist says to just continue Azith. because she is doing well and we don't want to "rock the boat". Hmmm she doesn't realize I want to drive the boat! I want to be in control of this disease not have it control DD!. Visiting new Ped Infection Control Doc next week to see if we should change antibiotic to one that shows on her Path report (makes perfectly good sense to me) Even though she seems to be doing extremly well I would like to see infection gone out of her completly! ENT did explain he felt like tonsils where holding infection and this has helped but also the infection was in her body somewhere before the tonsils (they were just doing job) so infection must still be present. I feel grateful we have path report to work off of--- Hope this helps and good luck!
  3. Yes, the PANDAS seems to be under control but the titers keep rising. Hmmm there may be thrush-tongue is patchy and white. How do I address the yeast? I hate to add antibiotic because of stomach pains but will if neccessary. We use probiotics but maybe not enough.
  4. I know this is alot like your post dabel but a little different. DD12 is the one that had the sneeze tic and recently had T&A with high hopes of stopping this dreadful disease.No major symptoms since May but ASO of 409 and AntiDnaise of 776 in May.T&A end of July and tonsils looked like had multiple previous infections.DD has actually been doing well but had blood draw Sept 17(about 7weeks post T&A) Results-ASO 409 and AntiDnaise-871.What is this about?!DD just general not feeling well, still complains with chronic sore throat(not severe),slight stomach aches,pretty much daily headaches but nothing severe.Taking 500mg Azithrymician 3x week. Waiting on doctor to tell us what to do but truly floored with recent blood results! What does all this mean? Do we take a wait and watch approach (kinda scary for ms control it myself) or does anyone have other suggestions. Maybe these blood levels are not high enough to be concerned about? HELP...
  5. Sounds like you have all your bases covered. Just wanted to give you hope--DD had hers out end of July and is doing extremely well--I know this is the right decision and ds will do great--tell him to eat lots of ice cream!!
  6. We never did pex or ivig because she got better before insurance approval but both ASO and AntiDnaise kept rising. But the sneezing stopped, the crowd anxiety and the seperation anxiety disappeared as well as the OCD germ thing (couldn't go to public places for fear of germs),the other fears left and finally the nightmares also. 6weeks post T&A and nothing has returned. Yes she got drip antibiotics plus 10 day's after (can't remember what was given but will get all reports this week) Azithromycin started after 10 days of other antibiotics. Her ENT just sent tonsils for path and asked for all kinds of test (not so sure he wasn't trying to prove wasn't strept at the time) This is not usually something that is done so I requested it but he had already decided to do it even before my request... Your ENT would know how to get it done. My husband actually did follow up for details but I will be getting the path report this week and can tell you more at that time (sorry) Whatever showed has made a believer of her ENT because he was VERY surprised at the outcome! I will post results of blood test in about a week ... Funny side note... During surgery a second anesthesiologist was present (due to a fear of ours of the outcome of the sedation due to previous experience) ENT was filling him in on DD'scase and he said OMG my son has PANDAS also! DD ENT was certainly wound up when he came out of surgery... Another ENT has now officially been added to the list of believing Dr.s due to this one childs experience! Prayerfully he can help others along the way! Keep up the battle because we are going to win the war!
  7. Please google Irlen Syndrom or Scotopic Sensitivity Syndrom. My DD as well as non pandas son have this. I have spoken with Dr T about this on several occasions and he has told me he has also noticed some kids with light sensitivity. I do not believe the two are related but do believe the part of the brain effected by each syndrom is somehow making each of her conditions worse. After reading about this if you have questions or want me to elaborate more please PM me. You will be amazed at the symptoms similar to what you are describing in your child! Light sensitivity is real and effects many but only some are severe enough to cause problems. My DD's sensitivity and conditions of this syndrom get much worse during an exacerbation!!
  8. So Glad to share!!! Had T&A on July 27--even though strep swab always neg the tonsils were sent to pathology and showed positive for strep and could tell had long term infection present. DD did great with no sign or symptoms of PANDAS then or since! Dd has stayed on Azithromycin since surgery and will be doing ASO and Anti-Dinase (sp?) next week. I will post results lets pray her levels are going down!!
  9. Be careful of the meningitis as one of the vaccines is live for this. DD11 got this and started tic 6weeks later Dr. T's thoughts were that it may have triggered. Something about the 6week mark - vaccine titers are at peek. Start with researching the brand of vaccine your doc gives--
  10. DD has a sneezing tic and took the azithrmycin pack for 5 days off 5 days than again for 5 days. Than after 5 days started 250mg 3x's/week eventually increasing to 500mg 3x's per week per Dr T. the tic went away after a month it stayed away for about 2months so we reduced antibiotic back 250mg. When the tic returned we started back to 500mg 3x's/week and it went away after almost two months and have kept this dose since the end of May. She also gets the terrible nightmares which are the last to leave. They are def related to PANDAS not the med's because she had them for months before diagnosis. Probiotics help with stomach pains. Clonadine was given by another doc for several months and did not touch the tic took off this when started the azith.(thanks to Dr T!) We have had to give Lexapro short term due to severe OCD, and anxiety the last round (it def gets worse each time she reoccurs). Helped her get through the rough spots. Hope this info helps you--
  11. We have been to many many doctors including a week stay in Texas Childrens in Houston (That being a huge waste of money and time). No one has helped us like Dr Jane El-Dahr at Tulane. She not only will treat the child she will help fight the insurance company also-- This is actually how we got to her. DD11 needed IVIG or PEX and insurance refused to pay. My daughter got better before the approval but she was still going to work on it. She has studied PANDAS and has conferenced with Dr Swedo. Stated all the test and treatments talked by parents here. She insisted on taking DD tonsils out when ASO continued to rise even though no positive swab for strept throat--When tonsils were removed pathology showed much evidence of long term strept. Now we are waiting 6 weeks to repeat ASO and Anti-Dnaise while on antibiotics. She and her staff are awesome. Hope this helps feel free to PM me if I can give you other info. I really don't think you will go wrong with her. They will help you up front with insurance and financial stuff.
  12. I know it's not Houston but close if nothing else comes up--- Dr. Jane M. El-Dahr, MD 1415 Tulane Avenue New Orleans, LA 70112-2600 (504) 988-7625 She's an immunologist and seems knowledgable on PANDAS
  13. Dr. Jane El-Dahr Pediatric Allergy & Immunology Tulane University School of Medicine 1415 Tulane Ave New Orleans, LA, 70112 Phone Number:(504) 988-2300
  14. My 11 year old dd started when she was 9 with daily chronic migraine headaches. I know this was the start because she had a severe upper respiratory infection (prob strep) then these severe headaches started. She basically had a severe headache for a year and a month when they stopped abruptly and one month after that this bizarre sneeze started that eventually turned into a sneeze tic that did not stop for 13 weeks. She still has severe headaches usually leading up to an exacerbation. Sometimes she just sits and holds her head crying and they go on for days but migraine meds only help temporarily. The headache is almost always in the exact same location in the right temporal lobe. None of the many doctors she has been to can explain or help these headaches--Sorry for that news but I believe the headaches are directly related to PANDAS.
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