Agnes26 Posted August 1, 2012 Report Share Posted August 1, 2012 My dd is 5 weeks post IVIG. While her other symptoms like emotional lability and night waking have improved greatly, OCD is unrelenting. She's had a few really good days here and there, but nothing consistent nor lasting. I'm losing hope that this will help her and school starts Monday. Link to comment Share on other sites More sharing options...
nicklemama Posted August 1, 2012 Report Share Posted August 1, 2012 Five weeks post IVIG is way too early to expect results. My DS was doing very well at 3 months post IVIG. At five weeks, it was up and down. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted August 1, 2012 Report Share Posted August 1, 2012 Just another note from the IOCDF Conference. Dr. Swedo has said it before, but she brought it up again in the PANDAS Q&A session we had Friday night: she notes that "tincture of time" is an important component of the healing and that she expects the healing after IVIG to continue for a full year following the actual procedure! So, hang in there, see if you can get your DD to partake in some ERP/CBT to help her cope with the obsessions and compulsions, and try to be patient. Link to comment Share on other sites More sharing options...
Agnes26 Posted August 1, 2012 Author Report Share Posted August 1, 2012 Thanks for the reassurance that we're still early in this process. DD is 7. Is ERP/CBT helpful for little ones? Our doctor seemed to think IVIG would be sufficient. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted August 1, 2012 Report Share Posted August 1, 2012 Thanks for the reassurance that we're still early in this process. DD is 7. Is ERP/CBT helpful for little ones? Our doctor seemed to think IVIG would be sufficient. Yes, ERP/CBT is VERY helpful for younger ones! I'm sure several families with younger kids will chime in here, as well. Especially if your DD has been "coping" for a while before the IVIG, she may have actually developed some routines or rituals that will be harder to shake, even once the original anxiety behind the behaviors has abated. Having some ERP "tricks up your sleeve" will also help support your DD should there be a future exacerbation. You cross your fingers and hope that doesn't happen, but it can. So all the better to have tools at your disposal! Link to comment Share on other sites More sharing options...
T_Mom Posted August 5, 2012 Report Share Posted August 5, 2012 (edited) Hi--Two daughters, both had IVIG and I know the 5 week mark seems like a "long" time right now, and that you are feeling that you should be seeing "more" healing, but it takes time, and more time-- For us, the comment re: a full year after IVIG was true for my younger daughter (and she was very severe.) Give it more time--You have seen improvements, be GLAD (I know you are:) and take heart that this does mean your child's illness was affected, now the healing and re-setting takes time-- I would look towards the 12 week mark, and see where you are then, and so on...Important to continue to treat with the abx of course, and get that next doctor appt. just in case at 3 months you see a backslide that may need help. If you have not seen a counselor who treats OCD I think that may be helpful for lingering "habitual" issues if they persist, just my opinion--I wish you the best. Edited August 5, 2012 by T.Mom Link to comment Share on other sites More sharing options...
airial95 Posted August 6, 2012 Report Share Posted August 6, 2012 We did ERP with our 4 year old, and yes, it does help with the little ones. For what it's worth, in my personal opinion, (and I'm not a dr or anything - just a fellow crazy mom!) ERP/CBT is helpful in the younger ones beacuse I think for kids like mine, the OCD becomes a habit - or their version of "normal" because it started at such a young age, they don't know any different. (Just like it becomes second nature to always wash your hands after using the restroom, so does having to have all of your food in quantities of 5) We found the techniques very helpful when he was coming out of a flare. If he was in a full blown exacerbation, they weren't as useful - but that in itself was helpful for us to see when strep might be lurking before we had a full scale meltdown. Link to comment Share on other sites More sharing options...
Dedee Posted August 6, 2012 Report Share Posted August 6, 2012 We just celebrated our one year post IVIG with our daughter. She was 7 when she received her IVIG and we then followed it with CBT / ERP. I can tell you that the CBT / ERP was equally as helpful as the IVIG. One year later, she is doing so much better. I do believe in the "tincture of time" theory, although it is so very hard to actually live it. But again (and not trying to sound like a CBT therapist), the CBT/ERP will help you get through that time. I have 3 PANS kids and we have done CBT with all three at different ages and my youngest did the best. She seemed to be more open to the concepts. My biggest regret is that I didn't do this with my teenager when he was younger. At his age now, he is so very "stuck" in his ideas and resistant to the therapy. Over the past year, we have found a MTHFR mutation, KPU, and only a week ago started antibiotics for possible lyme disease. So I am also a believer that the right vitamins can be a huge help. So my recommendation is not to stop with just IVIG. I think (JMHO), that IVIG is always helpful but not always the complete answer. Hang in there. Things will get better. You are on the right road. Dedee Link to comment Share on other sites More sharing options...
Agnes26 Posted August 7, 2012 Author Report Share Posted August 7, 2012 Thank you all for your responses. It's been so helpful. I've scheduled an appointment with a local therapist and have a call into USF. Link to comment Share on other sites More sharing options...
airial95 Posted August 8, 2012 Report Share Posted August 8, 2012 USF is where my son has had therapy - he hasn't done the intensive program that others have, just weekly sessions since we're local. Everyone there is fantastic! Link to comment Share on other sites More sharing options...
Dedee Posted August 9, 2012 Report Share Posted August 9, 2012 If it's a possibilty for you at all, I would highly recommend USF for CBT / ERP. They are absolutely the best! You can't go wrong there. I promise they will help you through this. Please keep us updated. I would love to hear how things progress with therapy. Best of luck. Dedee Link to comment Share on other sites More sharing options...
Agnes26 Posted August 10, 2012 Author Report Share Posted August 10, 2012 Anyone know how long to expect a call back from USF after doing initial intake phone call? Link to comment Share on other sites More sharing options...
mdmom Posted August 10, 2012 Report Share Posted August 10, 2012 Wondering the same about USF. I did an intake phone call last Friday and am waiting for a call back. I'm keeping my fingers crossed that it will be a good fit for my DS15. Anyone have a teenager that went through the intensive 3 week program? Would love feedback. Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted August 11, 2012 Report Share Posted August 11, 2012 I remember feeling the exact same way. Please don't give up hope. Healing will happen. The waiting is the hard part. Don't worry about school. If the IVIG doesn't kick in before school, it is ok--it will kick in. It might take more than one IVIG, but they will eventually work. Healing will happen in its own time, but it will happen. Hang in there and try not to worry. Link to comment Share on other sites More sharing options...
airial95 Posted August 12, 2012 Report Share Posted August 12, 2012 Its been a while since my intake call...but if I remember correctly it was about a week... Link to comment Share on other sites More sharing options...
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