Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 Hi - I just tried to reply to your email on my iPad and I don't think it sent properly. So I apogize if you receive this email twice. My daughter did IVIG with Dr. K in Hinsdale in September 2009. I know what a tough decision this is. If you'd like, you can call me and I can answer any questions you might have. My cell number is and my home is . Wishing all the best for you and your daughter! Suzie Sent from my iPhone > Hello Everyone! Happy New Year to You all! > > I wanted to give everyone an update on my (13 year olds) dd progress. She was clobbered with a very debilitaing, sudden onset case of OCD in September 2011. (Tested high w/ Micoplasma in November) SSRI Meds helped somewhat but she had a bad reaction when we tried to increase the dosage and after reaching out and hearing from many of the wonderful people in this group we ended contacting and getting in to see Dr. K in Hinsdale, IL who put her on a steroid burst in December. (At the time I was ready to have her attend an Intense Outpaitent Program with CBT/ERP specifically for OCD but wanted to follow up on the possible PANDAS aspect before commiting to that program because her MicoPlasma reading came back as high.) > On steroids DD symtoms did decrease quite a bit and there were a few days within the 3 week period where she was almost her old self. It was wonderful to get her back even for a short time. After reviewing, the Dr. said her response to the burst was positve, which supports the diagnosis of PANDAS. We now are looking at jumping right into IVIG treatments since she has been pretty much disabled since this began. She is getting progressively worse each day now that the Steroids are wearing off -- its been a rough week for us all once again dealing with the building amount of extreme fear and anxiety that paralizes her and affects the entire family. I just want to say Thank You to all who have shared their stories and offerd their support. I dont know how I could have survived the last few months without you. We do have a clear path at this point and hopefully very soon I will be in a position to offer some support and hope to others as > well. > > I am a little nervous about the IVIG treatment and very concerned with the process and the cost involved so if anyone has had any experieance with this I'd love to hear from you. We are meeting with the Dr. in one week to go over all before we schedulle the IVIG so the more info/questions I have ready -the better. Also, on top of all this my dd has decided she doesnt like to brush her teeth. She says its too gross. (grosser than NOT brushing?!) Any suggestions to help that would be welcome. Also, at this point we have a team of drs-- phychiatrist, phychologist, regular pediatrician, allergist, and Pediatircian/Pandas Dr. on our speed dial. (soon to add the dentist to the list as well!) Due to the PANDAS diagnosis is it best to consolidate for a time and just see the PANDAS specialist? The phych was for the meds, the pychologist provided counseling (no CBT/ERP). This is exahusting! Your input and thoughts would be much > appreciated. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 I live right by hinsdale used to teach there where do u guys live? Sent from my iPhone > Hi - > > I just tried to reply to your email on my iPad and I don't think it sent properly. So I apogize if you receive this email twice. My daughter did IVIG with Dr. K in Hinsdale in September 2009. I know what a tough decision this is. If you'd like, you can call me and I can answer any questions you might have. My cell number is and my home is . > > Wishing all the best for you and your daughter! > > Suzie > > Sent from my iPhone > > > > > Hello Everyone! Happy New Year to You all! > > > > I wanted to give everyone an update on my (13 year olds) dd progress. She was clobbered with a very debilitaing, sudden onset case of OCD in September 2011. (Tested high w/ Micoplasma in November) SSRI Meds helped somewhat but she had a bad reaction when we tried to increase the dosage and after reaching out and hearing from many of the wonderful people in this group we ended contacting and getting in to see Dr. K in Hinsdale, IL who put her on a steroid burst in December. (At the time I was ready to have her attend an Intense Outpaitent Program with CBT/ERP specifically for OCD but wanted to follow up on the possible PANDAS aspect before commiting to that program because her MicoPlasma reading came back as high.) > > On steroids DD symtoms did decrease quite a bit and there were a few days within the 3 week period where she was almost her old self. It was wonderful to get her back even for a short time. After reviewing, the Dr. said her response to the burst was positve, which supports the diagnosis of PANDAS. We now are looking at jumping right into IVIG treatments since she has been pretty much disabled since this began. She is getting progressively worse each day now that the Steroids are wearing off -- its been a rough week for us all once again dealing with the building amount of extreme fear and anxiety that paralizes her and affects the entire family. I just want to say Thank You to all who have shared their stories and offerd their support. I dont know how I could have survived the last few months without you. We do have a clear path at this point and hopefully very soon I will be in a position to offer some support and hope to others as > > well. > > > > I am a little nervous about the IVIG treatment and very concerned with the process and the cost involved so if anyone has had any experieance with this I'd love to hear from you. We are meeting with the Dr. in one week to go over all before we schedulle the IVIG so the more info/questions I have ready -the better. Also, on top of all this my dd has decided she doesnt like to brush her teeth. She says its too gross. (grosser than NOT brushing?!) Any suggestions to help that would be welcome. Also, at this point we have a team of drs-- phychiatrist, phychologist, regular pediatrician, allergist, and Pediatircian/Pandas Dr. on our speed dial. (soon to add the dentist to the list as well!) Due to the PANDAS diagnosis is it best to consolidate for a time and just see the PANDAS specialist? The phych was for the meds, the pychologist provided counseling (no CBT/ERP). This is exahusting! Your input and thoughts would be much > > appreciated. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 We are in Westchester. I will be calling you shortly! I'd love to speak with you!  Thank you!! ________________________________ To: " " < > Cc: " " < > Sent: Friday, January 6, 2012 10:15 AM Subject: Re: dd update-its PANDAS  I live right by hinsdale used to teach there where do u guys live? Sent from my iPhone > Hi - > > I just tried to reply to your email on my iPad and I don't think it sent properly. So I apogize if you receive this email twice. My daughter did IVIG with Dr. K in Hinsdale in September 2009. I know what a tough decision this is. If you'd like, you can call me and I can answer any questions you might have. My cell number is and my home is . > > Wishing all the best for you and your daughter! > > Suzie > > Sent from my iPhone > > > > > Hello Everyone! Happy New Year to You all! > > > > I wanted to give everyone an update on my (13 year olds) dd progress. She was clobbered with a very debilitaing, sudden onset case of OCD in September 2011. (Tested high w/ Micoplasma in November) SSRI Meds helped somewhat but she had a bad reaction when we tried to increase the dosage and after reaching out and hearing from many of the wonderful people in this group we ended contacting and getting in to see Dr. K in Hinsdale, IL who put her on a steroid burst in December. (At the time I was ready to have her attend an Intense Outpaitent Program with CBT/ERP specifically for OCD but wanted to follow up on the possible PANDAS aspect before commiting to that program because her MicoPlasma reading came back as high.) > > On steroids DD symtoms did decrease quite a bit and there were a few days within the 3 week period where she was almost her old self. It was wonderful to get her back even for a short time. After reviewing, the Dr. said her response to the burst was positve, which supports the diagnosis of PANDAS. We now are looking at jumping right into IVIG treatments since she has been pretty much disabled since this began. She is getting progressively worse each day now that the Steroids are wearing off -- its been a rough week for us all once again dealing with the building amount of extreme fear and anxiety that paralizes her and affects the entire family. I just want to say Thank You to all who have shared their stories and offerd their support. I dont know how I could have survived the last few months without you. We do have a clear path at this point and hopefully very soon I will be in a position to offer some support and hope to others as > > well. > > > > I am a little nervous about the IVIG treatment and very concerned with the process and the cost involved so if anyone has had any experieance with this I'd love to hear from you. We are meeting with the Dr. in one week to go over all before we schedulle the IVIG so the more info/questions I have ready -the better. Also, on top of all this my dd has decided she doesnt like to brush her teeth. She says its too gross. (grosser than NOT brushing?!) Any suggestions to help that would be welcome. Also, at this point we have a team of drs-- phychiatrist, phychologist, regular pediatrician, allergist, and Pediatircian/Pandas Dr. on our speed dial. (soon to add the dentist to the list as well!) Due to the PANDAS diagnosis is it best to consolidate for a time and just see the PANDAS specialist? The phych was for the meds, the pychologist provided counseling (no CBT/ERP). This is exahusting! Your input and thoughts would be much > > appreciated. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 We are in Westchester. I will be calling you shortly! I'd love to speak with you!  Thank you!! ________________________________ To: " " < > Cc: " " < > Sent: Friday, January 6, 2012 10:15 AM Subject: Re: dd update-its PANDAS  I live right by hinsdale used to teach there where do u guys live? Sent from my iPhone > Hi - > > I just tried to reply to your email on my iPad and I don't think it sent properly. So I apogize if you receive this email twice. My daughter did IVIG with Dr. K in Hinsdale in September 2009. I know what a tough decision this is. If you'd like, you can call me and I can answer any questions you might have. My cell number is and my home is . > > Wishing all the best for you and your daughter! > > Suzie > > Sent from my iPhone > > > > > Hello Everyone! Happy New Year to You all! > > > > I wanted to give everyone an update on my (13 year olds) dd progress. She was clobbered with a very debilitaing, sudden onset case of OCD in September 2011. (Tested high w/ Micoplasma in November) SSRI Meds helped somewhat but she had a bad reaction when we tried to increase the dosage and after reaching out and hearing from many of the wonderful people in this group we ended contacting and getting in to see Dr. K in Hinsdale, IL who put her on a steroid burst in December. (At the time I was ready to have her attend an Intense Outpaitent Program with CBT/ERP specifically for OCD but wanted to follow up on the possible PANDAS aspect before commiting to that program because her MicoPlasma reading came back as high.) > > On steroids DD symtoms did decrease quite a bit and there were a few days within the 3 week period where she was almost her old self. It was wonderful to get her back even for a short time. After reviewing, the Dr. said her response to the burst was positve, which supports the diagnosis of PANDAS. We now are looking at jumping right into IVIG treatments since she has been pretty much disabled since this began. She is getting progressively worse each day now that the Steroids are wearing off -- its been a rough week for us all once again dealing with the building amount of extreme fear and anxiety that paralizes her and affects the entire family. I just want to say Thank You to all who have shared their stories and offerd their support. I dont know how I could have survived the last few months without you. We do have a clear path at this point and hopefully very soon I will be in a position to offer some support and hope to others as > > well. > > > > I am a little nervous about the IVIG treatment and very concerned with the process and the cost involved so if anyone has had any experieance with this I'd love to hear from you. We are meeting with the Dr. in one week to go over all before we schedulle the IVIG so the more info/questions I have ready -the better. Also, on top of all this my dd has decided she doesnt like to brush her teeth. She says its too gross. (grosser than NOT brushing?!) Any suggestions to help that would be welcome. Also, at this point we have a team of drs-- phychiatrist, phychologist, regular pediatrician, allergist, and Pediatircian/Pandas Dr. on our speed dial. (soon to add the dentist to the list as well!) Due to the PANDAS diagnosis is it best to consolidate for a time and just see the PANDAS specialist? The phych was for the meds, the pychologist provided counseling (no CBT/ERP). This is exahusting! Your input and thoughts would be much > > appreciated. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 I went to IHM in westchester!! Sent from my iPhone > We are in Westchester. I will be calling you shortly! I'd love to speak with you! > > Thank you!! > > ________________________________ > > To: " " < > > Cc: " " < > > Sent: Friday, January 6, 2012 10:15 AM > Subject: Re: dd update-its PANDAS > > > I live right by hinsdale used to teach there where do u guys live? > > Sent from my iPhone > > > > > Hi - > > > > I just tried to reply to your email on my iPad and I don't think it sent properly. So I apogize if you receive this email twice. My daughter did IVIG with Dr. K in Hinsdale in September 2009. I know what a tough decision this is. If you'd like, you can call me and I can answer any questions you might have. My cell number is and my home is . > > > > Wishing all the best for you and your daughter! > > > > Suzie > > > > Sent from my iPhone > > > > > > > > > Hello Everyone! Happy New Year to You all! > > > > > > I wanted to give everyone an update on my (13 year olds) dd progress. She was clobbered with a very debilitaing, sudden onset case of OCD in September 2011. (Tested high w/ Micoplasma in November) SSRI Meds helped somewhat but she had a bad reaction when we tried to increase the dosage and after reaching out and hearing from many of the wonderful people in this group we ended contacting and getting in to see Dr. K in Hinsdale, IL who put her on a steroid burst in December. (At the time I was ready to have her attend an Intense Outpaitent Program with CBT/ERP specifically for OCD but wanted to follow up on the possible PANDAS aspect before commiting to that program because her MicoPlasma reading came back as high.) > > > On steroids DD symtoms did decrease quite a bit and there were a few days within the 3 week period where she was almost her old self. It was wonderful to get her back even for a short time. After reviewing, the Dr. said her response to the burst was positve, which supports the diagnosis of PANDAS. We now are looking at jumping right into IVIG treatments since she has been pretty much disabled since this began. She is getting progressively worse each day now that the Steroids are wearing off -- its been a rough week for us all once again dealing with the building amount of extreme fear and anxiety that paralizes her and affects the entire family. I just want to say Thank You to all who have shared their stories and offerd their support. I dont know how I could have survived the last few months without you. We do have a clear path at this point and hopefully very soon I will be in a position to offer some support and hope to others as > > > well. > > > > > > I am a little nervous about the IVIG treatment and very concerned with the process and the cost involved so if anyone has had any experieance with this I'd love to hear from you. We are meeting with the Dr. in one week to go over all before we schedulle the IVIG so the more info/questions I have ready -the better. Also, on top of all this my dd has decided she doesnt like to brush her teeth. She says its too gross. (grosser than NOT brushing?!) Any suggestions to help that would be welcome. Also, at this point we have a team of drs-- phychiatrist, phychologist, regular pediatrician, allergist, and Pediatircian/Pandas Dr. on our speed dial. (soon to add the dentist to the list as well!) Due to the PANDAS diagnosis is it best to consolidate for a time and just see the PANDAS specialist? The phych was for the meds, the pychologist provided counseling (no CBT/ERP). This is exahusting! Your input and thoughts would be much > > > appreciated. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 I went to IHM in westchester!! Sent from my iPhone > We are in Westchester. I will be calling you shortly! I'd love to speak with you! > > Thank you!! > > ________________________________ > > To: " " < > > Cc: " " < > > Sent: Friday, January 6, 2012 10:15 AM > Subject: Re: dd update-its PANDAS > > > I live right by hinsdale used to teach there where do u guys live? > > Sent from my iPhone > > > > > Hi - > > > > I just tried to reply to your email on my iPad and I don't think it sent properly. So I apogize if you receive this email twice. My daughter did IVIG with Dr. K in Hinsdale in September 2009. I know what a tough decision this is. If you'd like, you can call me and I can answer any questions you might have. My cell number is and my home is . > > > > Wishing all the best for you and your daughter! > > > > Suzie > > > > Sent from my iPhone > > > > > > > > > Hello Everyone! Happy New Year to You all! > > > > > > I wanted to give everyone an update on my (13 year olds) dd progress. She was clobbered with a very debilitaing, sudden onset case of OCD in September 2011. (Tested high w/ Micoplasma in November) SSRI Meds helped somewhat but she had a bad reaction when we tried to increase the dosage and after reaching out and hearing from many of the wonderful people in this group we ended contacting and getting in to see Dr. K in Hinsdale, IL who put her on a steroid burst in December. (At the time I was ready to have her attend an Intense Outpaitent Program with CBT/ERP specifically for OCD but wanted to follow up on the possible PANDAS aspect before commiting to that program because her MicoPlasma reading came back as high.) > > > On steroids DD symtoms did decrease quite a bit and there were a few days within the 3 week period where she was almost her old self. It was wonderful to get her back even for a short time. After reviewing, the Dr. said her response to the burst was positve, which supports the diagnosis of PANDAS. We now are looking at jumping right into IVIG treatments since she has been pretty much disabled since this began. She is getting progressively worse each day now that the Steroids are wearing off -- its been a rough week for us all once again dealing with the building amount of extreme fear and anxiety that paralizes her and affects the entire family. I just want to say Thank You to all who have shared their stories and offerd their support. I dont know how I could have survived the last few months without you. We do have a clear path at this point and hopefully very soon I will be in a position to offer some support and hope to others as > > > well. > > > > > > I am a little nervous about the IVIG treatment and very concerned with the process and the cost involved so if anyone has had any experieance with this I'd love to hear from you. We are meeting with the Dr. in one week to go over all before we schedulle the IVIG so the more info/questions I have ready -the better. Also, on top of all this my dd has decided she doesnt like to brush her teeth. She says its too gross. (grosser than NOT brushing?!) Any suggestions to help that would be welcome. Also, at this point we have a team of drs-- phychiatrist, phychologist, regular pediatrician, allergist, and Pediatircian/Pandas Dr. on our speed dial. (soon to add the dentist to the list as well!) Due to the PANDAS diagnosis is it best to consolidate for a time and just see the PANDAS specialist? The phych was for the meds, the pychologist provided counseling (no CBT/ERP). This is exahusting! Your input and thoughts would be much > > > appreciated. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 Sent from my iPhone > We are in Westchester. I will be calling you shortly! I'd love to speak with you! > > Thank you!! > > ________________________________ > > To: " " < > > Cc: " " < > > Sent: Friday, January 6, 2012 10:15 AM > Subject: Re: dd update-its PANDAS > > > I live right by hinsdale used to teach there where do u guys live? > > Sent from my iPhone > > > > > Hi - > > > > I just tried to reply to your email on my iPad and I don't think it sent properly. So I apogize if you receive this email twice. My daughter did IVIG with Dr. K in Hinsdale in September 2009. I know what a tough decision this is. If you'd like, you can call me and I can answer any questions you might have. My cell number is and my home is . > > > > Wishing all the best for you and your daughter! > > > > Suzie > > > > Sent from my iPhone > > > > > > > > > Hello Everyone! Happy New Year to You all! > > > > > > I wanted to give everyone an update on my (13 year olds) dd progress. She was clobbered with a very debilitaing, sudden onset case of OCD in September 2011. (Tested high w/ Micoplasma in November) SSRI Meds helped somewhat but she had a bad reaction when we tried to increase the dosage and after reaching out and hearing from many of the wonderful people in this group we ended contacting and getting in to see Dr. K in Hinsdale, IL who put her on a steroid burst in December. (At the time I was ready to have her attend an Intense Outpaitent Program with CBT/ERP specifically for OCD but wanted to follow up on the possible PANDAS aspect before commiting to that program because her MicoPlasma reading came back as high.) > > > On steroids DD symtoms did decrease quite a bit and there were a few days within the 3 week period where she was almost her old self. It was wonderful to get her back even for a short time. After reviewing, the Dr. said her response to the burst was positve, which supports the diagnosis of PANDAS. We now are looking at jumping right into IVIG treatments since she has been pretty much disabled since this began. She is getting progressively worse each day now that the Steroids are wearing off -- its been a rough week for us all once again dealing with the building amount of extreme fear and anxiety that paralizes her and affects the entire family. I just want to say Thank You to all who have shared their stories and offerd their support. I dont know how I could have survived the last few months without you. We do have a clear path at this point and hopefully very soon I will be in a position to offer some support and hope to others as > > > well. > > > > > > I am a little nervous about the IVIG treatment and very concerned with the process and the cost involved so if anyone has had any experieance with this I'd love to hear from you. We are meeting with the Dr. in one week to go over all before we schedulle the IVIG so the more info/questions I have ready -the better. Also, on top of all this my dd has decided she doesnt like to brush her teeth. She says its too gross. (grosser than NOT brushing?!) Any suggestions to help that would be welcome. Also, at this point we have a team of drs-- phychiatrist, phychologist, regular pediatrician, allergist, and Pediatircian/Pandas Dr. on our speed dial. (soon to add the dentist to the list as well!) Due to the PANDAS diagnosis is it best to consolidate for a time and just see the PANDAS specialist? The phych was for the meds, the pychologist provided counseling (no CBT/ERP). This is exahusting! Your input and thoughts would be much > > > appreciated. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2012 Report Share Posted January 8, 2012 Hi , glad you have a definite path to treatment now. Do keep us updated. Question - any reason for the IVIG now as opposed to trying just some long-term antibiotics or other first? Teeth - would she just use her finger to brush? When my twins were younger than her, at one point ...and maybe too, would let me use a thin washcloth dipped in ACT to brush/wipe their teeth. > > Hello Everyone! Happy New Year to You all! > > I wanted to give everyone an update on my (13 year olds) dd progress. She was clobbered with a very debilitaing, sudden onset case of OCD in September 2011. (Tested high w/ Micoplasma in November) SSRI Meds helped somewhat but she had a bad reaction when we tried to increase the dosage and after reaching out and hearing from many of the wonderful people in this group we ended contacting and getting in to see Dr. K in Hinsdale, IL who put her on a steroid burst in December. (At the time I was ready to have her attend an Quote Link to comment Share on other sites More sharing options...
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