Pandas_chicago Posted September 8, 2010 Report Posted September 8, 2010 4 ½ years post IVIG. My son has been on 500 mg of keflex daily since. Dr. K has recently taken him off – giving my son a clear bill of health. I am nervous – but posting today to show that there is hope – it may take a while but Your children CAN recover! Again, there were times when I thought I was going to give up I couldn't sleep, eat, think , work, take care of my other children....it's like a nightmare that you can't share with your closest friends - they don't understand and even if they say they do they don't........when you have a bad day - know its ok....it's ok to get angry with the insurance companies - it's ok to get angry with the doctors....sometimes it takes a blow up to refocus... All the Pandas Children and families are in my thoughts daily..
philamom Posted September 8, 2010 Report Posted September 8, 2010 Pandas Chicago- Thank you for posting!!!! Great News--big Yay!
faith Posted September 8, 2010 Report Posted September 8, 2010 (edited) Oh be quiet chicago, LOL........ just kidding.... so glad to see you here girlie...... good luck and blessings, Edited September 8, 2010 by faith
MomWithOCDSon Posted September 8, 2010 Report Posted September 8, 2010 Thanks for sharing the positive light!
Kayanne Posted September 8, 2010 Report Posted September 8, 2010 Very happy for your family, thanks for sharing the update!! Do you mind telling us how old your son is now? Thanks
Pandas_chicago Posted September 8, 2010 Author Report Posted September 8, 2010 Very happy for your family, thanks for sharing the update!! Do you mind telling us how old your son is now? Thanks Sure - my son became ill September 23rd 2005 - he was 7 years old....he had IVIG Febuary of 2006. Today he is 12 years old
thereishope Posted September 8, 2010 Report Posted September 8, 2010 Glad to hear all is well. I'm happy for you and your family!
parents4eyes Posted September 8, 2010 Report Posted September 8, 2010 (edited) [ Edited October 2, 2010 by parents4eyes
Pandas_chicago Posted September 8, 2010 Author Report Posted September 8, 2010 4 ½ years post IVIG. My son has been on 500 mg of keflex daily since. Dr. K has recently taken him off – giving my son a clear bill of health. I am nervous – but posting today to show that there is hope – it may take a while but Your children CAN recover! Again, there were times when I thought I was going to give up I couldn't sleep, eat, think , work, take care of my other children....it's like a nightmare that you can't share with your closest friends - they don't understand and even if they say they do they don't........when you have a bad day - know its ok....it's ok to get angry with the insurance companies - it's ok to get angry with the doctors....sometimes it takes a blow up to refocus... All the Pandas Children and families are in my thoughts daily.. Thank you so much for letting us know there is hope. Can I ask... Does well mean your son is 100% / 95%? How long has he been at the well point? So, was the treatment that worked one IVIG and 4 1/2 years of Keflex? Any therapy - CBT or ERP? Please do keep us posted on how he does post treatment. Thanks!!! Antibiotics and steroids - then IVIG then Keflex...no CBT or ERP needed - he has been 100% symptom free for 2 1/2 years
norcalmom Posted September 8, 2010 Report Posted September 8, 2010 thank you for sharing! just curious - is there a reason you did keflex...and for so long? I know Dr. usually does low dose amox for a year and then cuts you off! We are almost 5 weeks post our first and hopefully only ivig I'm wondering if that took weeks or months to see difference in your son. Do you attribute his healing to the ivig (and keflex to protect him?) or to the keflex and/or time? We traveled from California to see Dr. K in august. Thank you again for sharing your positive story.
JAG10 Posted September 8, 2010 Report Posted September 8, 2010 PANDAS Chicago-Great to hear from you again! And the fantastic news is hope for us all. Did your child have increases in behavioral symptoms when exposed to bacterial or viral infections or regular "sick" symptoms? If so, did you increase to full strength abx when that occurred? Do you feel puberty played any role in yours and Dr. K's comfort level in d/c of abx 2 1/2 years? Did you feel like it took more than a year post IVIG to get to 95%+?? I am curious too about the choice of abx... Thank you so much for your cameo appearances of hope and encouragement!! Jill
Doug Posted September 8, 2010 Report Posted September 8, 2010 4 ½ years post IVIG. My son has been on 500 mg of keflex daily since. Dr. K has recently taken him off – giving my son a clear bill of health. I am nervous – but posting today to show that there is hope – it may take a while but Your children CAN recover! Again, there were times when I thought I was going to give up I couldn't sleep, eat, think , work, take care of my other children....it's like a nightmare that you can't share with your closest friends - they don't understand and even if they say they do they don't........when you have a bad day - know its ok....it's ok to get angry with the insurance companies - it's ok to get angry with the doctors....sometimes it takes a blow up to refocus... All the Pandas Children and families are in my thoughts daily.. Thank you so much for letting us know there is hope. Can I ask... Does well mean your son is 100% / 95%? How long has he been at the well point? So, was the treatment that worked one IVIG and 4 1/2 years of Keflex? Any therapy - CBT or ERP? Please do keep us posted on how he does post treatment. Thanks!!! Antibiotics and steroids - then IVIG then Keflex...no CBT or ERP needed - he has been 100% symptom free for 2 1/2 years
Doug Posted September 8, 2010 Report Posted September 8, 2010 So did dr K leave him on abx's for 4 1/2 years? I hope he leaves my dd on after the year is up she is on azith. Tracie
kimballot Posted September 8, 2010 Report Posted September 8, 2010 Many Congrats go out to you for a job well done and a healthy child! Thank you for sharing and for being a trailblazer. Best wishes for continued health!
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