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missjo

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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 an
  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
  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
  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
  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 exce
  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 treatm
  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 wa
  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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