FallingApart Posted July 20, 2009 Report Share Posted July 20, 2009 Hello, As I posted last week, we have just finished our 5 day steroid burst on my 3 yo dd. She responded fabulously and we ended the steroids with a completely diferent child than the one who started the steroid. We had our weekly meeting with our ped and she told us that after talking with Dr. K. we will 100% for sure regress and will need to do IVIG. I'm fine with this and after the results we saw last week, I was wanting to see if we could do a preventitive IVIG. (I was told we could not. It has to be done during a bout of PANDAS). My question is how long did it take your child to regress? I know this is completely arbitrary and that everyone is different, but I am interested to hear the stories. Each time our dd does something less than ideal, DH and I look at each other and wonder if it is regression or just a 3 year old. So stressful!!! Thanks in advance for your stories! Link to comment Share on other sites More sharing options...
P_Mom Posted July 20, 2009 Report Share Posted July 20, 2009 "We were told IVIG needed to be done in a bout of PANDAS." Falling Apart....who told you that? Just very curious because I posed that exact question to Dr. K and he told me the opposite. Most of the kids I know have gotten IVIG done AFTER the sudden, acute episode...not during. I am interested because we are getting IVIG done for our son soon, and, he is not in an acute episode...although still mildly symptomatic. I was told it would still work. Thanks! Kelly Link to comment Share on other sites More sharing options...
FallingApart Posted July 20, 2009 Author Report Share Posted July 20, 2009 Wow! That is really interesting! From my understanding, that is directly from Dr. K. We are in a decent state after our steroid burst and I would really like to do the IVIG right now to just keep the results going. I asked this to my ped, who asked it to Dr. K. I believe this is what I understood my ped to say. I personally have not spoken to Dr. K. My ped is consulting with him. Are you speaking with him personally? If not, I wonder if I should try and set up a consult with him. I really want to stay with the progress we have made. Please feel free to send me a private message and perhaps we can chat on the phone about this? I could certainly be saying this wrong. I am still trying to understand it all myself. Looking forward to your response! Link to comment Share on other sites More sharing options...
P_Mom Posted July 20, 2009 Report Share Posted July 20, 2009 Geez...straight from dr.k? Well, perhaps he changed his mind?! I know he is doing a lot of work with these kids and learning everyday...but, he did tell me that. I don't know what to think. Yes, we have been out to see him and have been working with him for almost 2 years. He told me it didn't matter when we did it! Like I said...I think things may be changing. Have you e-mailed him? If not, perhaps e-mail him your story and ask him that very question. I would be interested to see if he gives you the same response. Kelly pm me your e-mail or phone number...if you'd like. Link to comment Share on other sites More sharing options...
T_Mom Posted July 21, 2009 Report Share Posted July 21, 2009 Hi FA-- When our d had her worst exacerbation last summer (crippled by OCD, no speaking, etc. etc.) I believe that Dr. K indicated that the longest he had seen the results of steroids "last" was around 90 or so days...that is what I remember... He was correct, she had a mild exacerbation within that time frame. About 5 months later she had a severe incident of 10 days of severe OCD-no speaking again. We put her back on full-strength antibiotics and she cleared--but it truly took a good 3 months to come back to 85% herself again. However, if you read Dr K's website, I believe he indicates that antibiotics, if given early in the PANDAS illness may "cure" once and for all--I pray that is true for you. Hello, As I posted last week, we have just finished our 5 day steroid burst on my 3 yo dd. She responded fabulously and we ended the steroids with a completely diferent child than the one who started the steroid. We had our weekly meeting with our ped and she told us that after talking with Dr. K. we will 100% for sure regress and will need to do IVIG. I'm fine with this and after the results we saw last week, I was wanting to see if we could do a preventitive IVIG. (I was told we could not. It has to be done during a bout of PANDAS). My question is how long did it take your child to regress? I know this is completely arbitrary and that everyone is different, but I am interested to hear the stories. Each time our dd does something less than ideal, DH and I look at each other and wonder if it is regression or just a 3 year old. So stressful!!! Thanks in advance for your stories! Link to comment Share on other sites More sharing options...
LMama Posted July 21, 2009 Report Share Posted July 21, 2009 Can anyone tell me where I can find this Dr. K's website? I read a lot about him in here. Thanks! Link to comment Share on other sites More sharing options...
FallingApart Posted July 21, 2009 Author Report Share Posted July 21, 2009 http://webpediatrics.com/ Link to comment Share on other sites More sharing options...
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