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  1. twice lately my rapids have been negative and cultures are positive. My PANDAS kids have done the same thing in the past on occasion. What could cause this? i know my last rapid she got a good swab, I made sure she swabbed it a lot.
  2. thanks for everyones thoughts. The six YO and myself both did Clinda and Rifampin last round, my husband and 3YO did Augmentin and Rifampin(husband cant take mycin drugs and 3yo cant swallow pills so they took augmentin). We change toothbrushes after 48 hours of antibiotics and again at day 10. We have lysoled over and over. I really thought that the T&A would have knocked it out of 6YO at least for awhile. These are the antibiotics we tried for 6YO, Amoxicillin, Cefprosil(twice), Azithromycin, Clindamycin with Rifampin and now omnicef. I prefer not to go with Augmentin because Aug and Amox make him hyper, but I will go with Augmentin if I have too. Is there a strain of strep that is antibiotic resistant? Could all of the antibiotics we have been on cause us not to be able to eradicate it. I had 30days of Clinda in January for nasal MRSA, February z pack for upper respiratory infection possibly strep but was not tested, April 10 days Augmentin for strep and end of April 10 days clinda and rifampin. Husband 10 days augmentin and Rifampin in April for strep and late April-May 20 days of Avelox for ear infection. PANDAS son stays on Clinda prophylactic What would we even try next?
  3. My 6 YO nonPANDAS child got strep middle of February, did 10 days antibiotics, seemed to get better, on the thirteenth day woke up with fever and sore throat. strep again, 10 days antibiotic, seemed better, 13th day woke up with fever sore throat, strep again, this continued until April 3 he had T&A. During this time I got strep, my husband got strep and PANDAS son was not doing well, he was never sick and had negative streps but PANDAS symptoms were there. We decided to treat myself, husband and the two younger kids with 10 days of antibiotics with Rifampin added to last four days to hopefully eradicate the strep in our house. Two days ago I took the 6YO and 3YO to get strep test just to make sure they were clear and they both tested positive. They both had colds and doc said throats were red but neither had a fever or had complained of sore throat. Both kids have had T&A the 3YO had hers done last summer and 6YO last month. The doctor was shocked and said she didnt even know what to do next. She put them both on omnicef for 10 days and hopefully we will figure out what to do before they finish this round. Does anyone have any thought on what to do next? My husband and I had negative rapids and are waiting on cultures o return. We cannot get the PANDAS kid better until we get the strep out of this house. we do not have a dog so that is not the culprit. HELP!!!!!!!
  4. We used 2grams per KG divided over two days. We used Gamanex (sp?) It was recommended by our kidney doctor because Gamanex has the lowest sucrose and osmolarity which would be best for his kidney(he only has one). The night before he took an allergy pill (allegra, claritan etc.) an hour before procedure he took benedryl and tylenol. He also took another Benedryl after four hours because he tends to have an asthma reaction to the IVIG although he typically dosent have asthma.
  5. My son 16 has horrible handwriting all the time. We believe he has had PANDAS since infancy. He started out with normal handwriting in kindergarten and it progressed normally for a couple of years. Sometime in the first few years it went down hill and never recovered. At the time we did not know he had PANDAS and did not pay any attention to his writing just figured he had bad hand writing. When PANDAS is bad he writes like a first grader and when he is better it looks like a third grader. I dont think there is any hope I feel he has been writing like this for too long and thats all he knows. Thank goodness for computers and as they get older school requires less writing.
  6. We are looking for a inpatient eating disorder facility for our teenage son with PANDAS. Does anyone have any thoughts on a facility? We live in Virginia.
  7. Sorry for the delay in answering questions. His catheter was in his groin. We came home from Georgetown with my son doing well he was not throwing up as much. Unfortunately one of our younger kids had had strep before we left for Georgetown and I assumed he would be cleared when we returned home. WRONG! We tried to keep the PANDAS kid away from the strep kid but keeping him from being exposed was impossible. Camden(the PANDAS)kid did not get strep(he is on prophylactic antibiotics) but of course the exposure was there. He started throwing up again almost immediately and continues to throw up. The little strep guy would take antibiotics for 10 days look like he was rid of it and on day three after antibiotics were done he would wake up with fever and sore throat. This started middle of February and continued with 13 day cycles until last week when we had his tonsils and adenoids removed. We are praying this has gotten rid of the strep. BUTTTTTTTTT last Friday I came done with strep. Our 21 YO daughter who has PANDAS is scheduled for T&A next week. I am not sure what the next step is going to be for Camden we will meet with Doc soon to look at treatment options but I feel he needs to start NG feeds again as he is loosing more weight. He is down about 20 lbs from November. He has gone from 50 percentile height and weight to 50% height and 19% weight. It is scary and frustrating. I feel we are working so hard and making no progress.
  8. Has your child ever had high sugar in Urine but not in blood? Our family has Familiar Glycourea Myself, my dad and my two PANDAS kids have sugar in our urine but blood levels are normal. It is not always in our urine but occurs randomly especially when we are sick. It is hereditary and is believed to be autoimmune. it causes no problems but is a sign that we could have other autoimmune problems. Also my nonPANDAS child has blood in his urine all the time that is believed to be from calcium crystals that cause small cuts in his kidneys(or bladder cant remember which). It also is benign except can eventually could cause kidney stones. My two kids with PANDAS have the sugar issues and my dad and myself probably had mild PANDAS as a child and still have some OCD tendencies. My nonPANDAS son does not have the sugar issue! I found this interesting.
  9. What is abnormal in your childs bloodwork? It would be interesting to see what the kids have in common. Also include things that are consistently on the high or low end of normal. My childs results low anion gap high CO2 high Eosinophils high Monocytes low MPV high alk phos low alt high end of normal AST
  10. My son had plasmapheresis this past week at Georgetown. It was a fairly easy and only slightly painful process. His worst PANDAS symptom before treatment was involuntary vomiting associated with eating disorder. After the second day of treatment he stopped vomiting. It has been three days since second treatment and only one small vomiting episode. Crossing fingers that it will continue to stay good. His other PANDAS symptoms were not to bad before treatment so I cant tell if they are better yet. I do want to see if anyone has thoughts on some of his blood work before and after treatment? They drew blood before treatment began, after first and ater second day but they did not draw after third. 16 year old male Before treatment,....... after first day,...... after second day..............., ref range.............,blood draws from Dec 2011, Eosinophil....6.7,...........4.6 ................. ..4.2...............................0-4%................ 8.5 MPV.........7.6............7.7 ................... 8.0...............................9.6-11.7 .................. 9.2 alk phos ......206..........not tested................... 73..............................38-126................307 AST ..........27........... not tested..................14 ............................3-34 ...................30 ALT..........14 ................. nt .................... 8 ...........................15-41 ................. 7 anybody have any thoughts on why these changed for the better with plasmapheresis? Thanks Melissa
  11. For those of you who have had plasmapharesis at Georgetown. When you go for the initial appt on Monday what do they do(exam, bloodwork?)? If they do bloodwork what are they looking for? Do you leave after that and return Tuesday morning to begin inpatient treatment? When do they put the line in, Monday after appointment or Tuesday morning? How long does the treatment run each day. Do they give meds during treatment(like benadryl)? How did your child feel during the stay (tired, sick, fine)? Do the kids return to school immediately after treatment? Sorry for all the questions just want to be prepared. Thanks Melissa
  12. My son has anorexia with PANDAS. We are getting ready to try plasmapheresis. He has had most PANDAS symptoms at one time or another. the food issies started at around 9 with eating only healthy foods and now at 16 he is involuntarily vomiting most of what he eats and drinks. He has suffered bulimia and anorexia in the past.
  13. My 16 YO son has had episodes of restricting liquid and food. He felt like if he drank one ounce of water he would weigh one ounce more. He has an eating disorder associated with his PANDAS. Not sure if that helps any. My sons OCD with food started at around 9 also with having to eat only healthy foods.
  14. It looks like the full page is there now. So glad to see IVIG and Plasmapheresis is listed as treatments. Yeah!!!!!
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