betterdays Posted April 2, 2009 Report Share Posted April 2, 2009 Hello, My 8 year old DD is doing much better after we figured out she had Pandas. I figured it out Thank you! SHe was writing the same word over and over and counting every letter in every word people were saying. Also crying in school and staring off when people asked her questions. SHe had antiobiotics for 1o days pennicillin and she was much better. SHe is very happy but still counting letters in words. Please if anyone has any ideas our PEd. was not helpful and neurologist consulted with ID Dr. who said yes it's Pandas and no need for any more antibiotics. ANy suggestions of names of DOcs in Central Jersey area?? thanks so much! JOAN Link to comment Share on other sites More sharing options...
melanie Posted April 2, 2009 Report Share Posted April 2, 2009 Hello, My 8 year old DD is doing much better after we figured out she had Pandas. I figured it out Thank you! SHe was writing the same word over and over and counting every letter in every word people were saying. Also crying in school and staring off when people asked her questions. SHe had antiobiotics for 1o days pennicillin and she was much better. SHe is very happy but still counting letters in words. Please if anyone has any ideas our PEd. was not helpful and neurologist consulted with ID Dr. who said yes it's Pandas and no need for any more antibiotics. ANy suggestions of names of DOcs in Central Jersey area?? thanks so much! JOAN hi I have a dr in middletown nj dr david dornfield hes a DO and I use him for my 14yr old pandas son Hes good sometimes alittle busy but knows pandas also I have a neoro in columbia Pres shes good with pandas but likes more evidence with titers Link to comment Share on other sites More sharing options...
EAMom Posted April 3, 2009 Report Share Posted April 3, 2009 Hi... here's a thread on Nj. docs http://www.latitudes.org/forums/index.php?showtopic=4481 It sounds like the pen. helped a bit but didn't really control the PANDAS entirely...most folks on this forum end up using stronger abs such as Kelfex or Azith. How long has it been since she stopped the abs? I would definitely do another throat culture (assuming more that a few days have passed since you've been off abs). If it is positive the doc will have to rx a stronger ab. If it is negative, I would culture again in 3 weeks. Make sure they do a 48-72 hour culture if the rapid is negative. Link to comment Share on other sites More sharing options...
betterdays Posted April 3, 2009 Author Report Share Posted April 3, 2009 Hi...here's a thread on Nj. docs http://www.latitudes.org/forums/index.php?showtopic=4481 It sounds like the pen. helped a bit but didn't really control the PANDAS entirely...most folks on this forum end up using stronger abs such as Kelfex or Azith. How long has it been since she stopped the abs? I would definitely do another throat culture (assuming more that a few days have passed since you've been off abs). If it is positive the doc will have to rx a stronger ab. If it is negative, I would culture again in 3 weeks. Make sure they do a 48-72 hour culture if the rapid is negative. Thank you everyone. SHe is due for blood test this month. School social worker is now seeing her due to crying and anxiety. Sounds like she needs another dose of antibiotics. Wondering if we should take her to CHOP? Link to comment Share on other sites More sharing options...
betterdays Posted April 3, 2009 Author Report Share Posted April 3, 2009 Hello, My 8 year old DD is doing much better after we figured out she had Pandas. I figured it out Thank you! SHe was writing the same word over and over and counting every letter in every word people were saying. Also crying in school and staring off when people asked her questions. SHe had antiobiotics for 1o days pennicillin and she was much better. SHe is very happy but still counting letters in words. Please if anyone has any ideas our PEd. was not helpful and neurologist consulted with ID Dr. who said yes it's Pandas and no need for any more antibiotics. ANy suggestions of names of DOcs in Central Jersey area?? thanks so much! JOAN hi I have a dr in middletown nj dr david dornfield hes a DO and I use him for my 14yr old pandas son Hes good sometimes alittle busy but knows pandas also I have a neoro in columbia Pres shes good with pandas but likes more evidence with titers Link to comment Share on other sites More sharing options...
betterdays Posted April 3, 2009 Author Report Share Posted April 3, 2009 Hello, My 8 year old DD is doing much better after we figured out she had Pandas. I figured it out Thank you! SHe was writing the same word over and over and counting every letter in every word people were saying. Also crying in school and staring off when people asked her questions. SHe had antiobiotics for 1o days pennicillin and she was much better. SHe is very happy but still counting letters in words. Please if anyone has any ideas our PEd. was not helpful and neurologist consulted with ID Dr. who said yes it's Pandas and no need for any more antibiotics. ANy suggestions of names of DOcs in Central Jersey area?? thanks so much! JOAN hi I have a dr in middletown nj dr david dornfield hes a DO and I use him for my 14yr old pandas son Hes good sometimes alittle busy but knows pandas also I have a neoro in columbia Pres shes good with pandas but likes more evidence with titers Thank you, yeah, we are floudering in this looking for some kind of help so I appreciate your help. We don't live far from Dr. wondering if he accepts Aetna. AFter getting another note from teacher and school social worker I am ready to go to CHOP. It might be nice to try someone closer! thanks so much. JOan Link to comment Share on other sites More sharing options...
melanie Posted April 4, 2009 Report Share Posted April 4, 2009 Hi...here's a thread on Nj. docs http://www.latitudes.org/forums/index.php?showtopic=4481 It sounds like the pen. helped a bit but didn't really control the PANDAS entirely...most folks on this forum end up using stronger abs such as Kelfex or Azith. How long has it been since she stopped the abs? I would definitely do another throat culture (assuming more that a few days have passed since you've been off abs). If it is positive the doc will have to rx a stronger ab. If it is negative, I would culture again in 3 weeks. Make sure they do a 48-72 hour culture if the rapid is negative. Thank you everyone. SHe is due for blood test this month. School social worker is now seeing her due to crying and anxiety. Sounds like she needs another dose of antibiotics. Wondering if we should take her to CHOP? Hi again Dr dornifield takes bcbs Im sure he takes atena call CHOP is grear but the whole pandas dx is hard to get you need a dr who understands this dx its alot to "get" I see a huge difference with danny in 1 1/2 months on zith anyone on this thread can tell you i was at the end of my rope things are getting better slowly hes also taking nystatin tenex buspar inositol b6 taurine mag taurate and sparinalactate (sp) I would like some info on sparinalactate if any one has any good luck Link to comment Share on other sites More sharing options...
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