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Everything posted by Tracie

  1. And 1 ivig could have done ok for us BUT she caught H1N1 on the way back from Chicago.. so who knows??? But like I said if you are going to do 1 ivig save what you can for #2 .. Tracie
  2. We love Dr. K BUT we did need 2 IVIGs we had one at 5 years and one at 6ish she is 8 now and doing great We would do it again if needed Insurance helped a little bit but most of it went on credit cards that we took money off of.. There isnt a cure for PANDAS but a treatment.. Tracie
  3. I am so sorry there is nothing like ear pain My friends ear hurt for about a month and then they pulled a heap of goo out and it was all fungus.. and I think cotton from a q tip her ear always iched from somthing that she was eating?? so whatever is causing it might just be to far down for them to see yet? I hope you feel better soon Tracie
  4. So are they on abx's like every ther day to keep strep out? my DD takes azith every other day 250 mgs she has had ivig twice.
  5. What abx's are you taking and how much? Tracie
  6. Im just not sure.. My dd has been PANDAS free for about 18 months little flairs her and there but nothing we couldnt control with abxs.. So with that said she wants to go back to school and not homeschool for second grade... She did so good last year sick only 1 or 2 times.. not everyother week like reg school I know that we cant keep her in a bubble anymore but If she gets sick all the time again then I think we will be back for IVIG # 3 with Dr.k.. but then she might be fine even if she does get sick alot.. so confused...
  7. We went to Dr.K he did ivig twice on our DD and she is doing great
  8. I homeschooled my dd for first grade and it went good I think I am going to do it again for 2 grade because If she has a PANDAS flair or has a bad relap I can still try to keep up with her school We will try to get her back to school in third
  9. I think Its only first grade so its better to try to catch up now insted of always being behind.. Tracie
  10. Hello everyone I did K-12 last year for my dd for first grade and I am going to do it again this year also I LOVE IT !!!! her teacher was awesome the program is easy to follow if you need help all you need to do is call or e mail there teacher I just cant say enough goo things about it.. you can set your program up the way you want it I clean houses so I am off on Monday and Tuesday so those are our big days to get alot done I work on Wed,Thursday,Friday so my parents help me out with her math and flash cards and reading so if you work in the day you can do it at night or on the weekends and the best part about it???? I dont need to say anything to anyone about her I do have a 504 just because is she has a flair they know what is going on They send you all the book and everything you need for the year I had school stuff from one end to the other... LOL They have sesions with the teachers on line if you cant make it for some reason it is recored and you can do it later My dd wants to go back to school but I think one more year would be good for her she has been PANDAS free for almost 18 months (knock on wood) 2 ivigs ... and abxs are doing the trick.. hope this post helps Tracie
  11. I am so sorry that you have to wait so long I guess we just got lucky both IVIGs for my dd we did not have to wait so long I pray for you to have the strength to hang on.. because what other choice do we have?? I hope he will find the strength to hang on too.. Tracie
  12. This is why I homeschool.. I didnt need to tell anyone ANYTHING about my dd no eye rolling,no "oh ok I guess we will let you know if there is strep in the class" ect ect.. and the best part about it is my dd was only sick 1 time ALL YEAR!!! so happy about that because that has helped with her healing of PANDAS.. I am going to homeschool her one more year and this year thank goodness it is only second grade.. LOL.. and get her back into sports and that way when she does get sick she can still do her school work and NOT get behind in school again! But if you cant homeschool get a 504 plan through the school I even have a 504 plan with the homeschool that we do as a just in case.. hang in there Tracie
  13. Why does the Dr want to lower the Dose of Augmention? who is the Dr?
  14. Hang in there.. I lost track of all the times we have had to stay at home when we have had something planed because of a fever...
  15. We live in Colorado and have been to Dr.K twice for ivig for our DD and I will go back to him anytime all I can say is to save your money with the other drs and save it for Dr K He knows what he is doing.. even with all of the info out there it is just not getting into the Docs heads I dont get it.. My DD Doc here in Colo got upset with me because she had not seen my dd in over a year and wanted her to come in for a check up when I got there we started to talk about PANDAS and she was happy that my dd was doing so well but still didnt like her on all of the abxs and I said "well you are not her PANDAS doc so she dont need to see you as much..Dr K is her PANDAS Doc and you are her other doc.. She did not really like the remark but I DONT CARE!!! So that is how I feel.. I am starting to look at some other Docs in town so we will see how that goes... Stick with the Doc that will help you and dont waste time with the ones that wont.. Tracie
  16. Just wanted to say Good morning to all of us AWESOME parents out there fighting this battle.. keep fighting for your kids.. Tracie
  17. I wish we would win the lotto then we could help so many parents that need money for treatment!!! we got lucky Blue cross blue sheild helped pay for our 2 IVIG's but that was it.. not the Doc and the plane and hotel, rental car, food.. the list goes on and on BUT I would do it again in a heart beat. Will your Doc at least give him some abx's? try zithrmicien (sorry I can't spell it) my DD has taken it everyday for almost 3 years sometimes we go down to everyother day like we are now but if she has a flair up we go back to everyday.. I hope this summer we can go down to 3 days a week. Hang in there.
  18. OMG So sorry my computer just freeked out me.. anyway my DD has never tested + for strep throat but Dr K said that it probley started in her ears..she started at 4.. so dont think because the strep is - he don"t have PANDAS Tracie
  19. Find a PANDAS Doc.. and get the blood tests started Dr.K has been ours for 3 years there is Dr.B and Dr T Get the help you need with a Doc that knows what he is doing Tracie
  20. This IS great to news for all of us !!! Have a very very HAPPY BIRTHDAY to him and a very happy day for you PARTY PARTY PARTY !!!!! Tracie
  21. I agree with this.. I would try to keep it even if she is doing ok.. Tracie
  22. Ok the #3 just scared me... we were on #3 with IVIG #2 But she is doing good .. So everyday her brain heals the better off we are.. I hope Tracie
  23. So is there a difference in augmention and zith for yeast? We started my dd on augmention after her first ivig and she couldnt handle it at all.. so she has been on zith. Hang in there and I have to laugh at the boy who said that there is no normal sick child.. he is so right Hugs to you Tracie
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