peglem Posted June 3, 2010 Report Share Posted June 3, 2010 Allie's last IVIG was 3 weeks ago. For the last 2 weeks, but especially the last one things have been pretty rough. Lots of SIB, fixations on things that apparently terrify her but she can't let go of... But today, at @ 1:00 it just shut off. She's been calm and peaceful. She's had one of those hand held computer games since October, but has really never been ever to really play the games where you have to guide the characters through some environment. She just hasn't had the dexterity to manage it. She sat down this evening and just started playing it, and she's not great at it, but she's about as good as I am! I am so amazed and excited... Don't know how long this will last, but what a rush! So, I've heard about symptoms happening like a switch was flipped, but recovery? Has this happened with any of your kids, where symptoms just cease abruptly? Link to comment Share on other sites More sharing options...
kimballot Posted June 3, 2010 Report Share Posted June 3, 2010 Wow! Keep us posted! This is great! Link to comment Share on other sites More sharing options...
melanie Posted June 3, 2010 Report Share Posted June 3, 2010 totally great!!!Awesome!!!Are you keeping a journal? Melanie Link to comment Share on other sites More sharing options...
lfran Posted June 3, 2010 Report Share Posted June 3, 2010 That's wonderful. We have had symptoms shut off suddenly two times. Once after a major blood draw and once, surprisingly, in the middle of a Chinese restaurant. The latter was really odd, because DS8 had been at a very high level for weeks and weeks and was very high level walking into the restaurant. Then, mid-meal, gone and stayed gone for a few weeks (no meds, no treatment, so hopefully yours will last much longer. == lfran Allie's last IVIG was 3 weeks ago. For the last 2 weeks, but especially the last one things have been pretty rough. Lots of SIB, fixations on things that apparently terrify her but she can't let go of... But today, at @ 1:00 it just shut off. She's been calm and peaceful. She's had one of those hand held computer games since October, but has really never been ever to really play the games where you have to guide the characters through some environment. She just hasn't had the dexterity to manage it. She sat down this evening and just started playing it, and she's not great at it, but she's about as good as I am! I am so amazed and excited... Don't know how long this will last, but what a rush! So, I've heard about symptoms happening like a switch was flipped, but recovery? Has this happened with any of your kids, where symptoms just cease abruptly? Link to comment Share on other sites More sharing options...
P_Mom Posted June 3, 2010 Report Share Posted June 3, 2010 Peg, AWESOME!! Yes, Dr. K says it should happen suddenly....it did for us, too! Hope this lasts!! (What dose IVIG did Allie get?) Kelly Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted June 3, 2010 Report Share Posted June 3, 2010 That's wonderful. We have had symptoms shut off suddenly two times. Once after a major blood draw and once, surprisingly, in the middle of a Chinese restaurant. The latter was really odd, because DS8 had been at a very high level for weeks and weeks and was very high level walking into the restaurant. Then, mid-meal, gone and stayed gone for a few weeks (no meds, no treatment, so hopefully yours will last much longer. == lfran MSG? Actually, I'm only half-joking. If MSG can mess with some folks for the worse, is it possible it was able to "throw a switch" in your DS by giving his system something else to occupy it, rather than the BBB or basal ganglia? Back to Google and Wikipedia! Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted June 3, 2010 Report Share Posted June 3, 2010 Peglem -- That's great! Seems as though some others have had similar post-IVIG experiences, so we'll hold a thought for you that this sustains! Enjoy your newfound "gamer"! Link to comment Share on other sites More sharing options...
trggirl Posted June 3, 2010 Report Share Posted June 3, 2010 That's wonderful news!!!! And fascinating. I really wish I knew the mechanism of what was going on in their little bodies. I hope they get it figured out in my lifetime. Link to comment Share on other sites More sharing options...
tantrums Posted June 3, 2010 Report Share Posted June 3, 2010 Wonderful!!! Hope it continues for you My son has had a day here and there where he is essentially symptom free. I find it so eerie, I hardly enjoy the time I have. It's just so weird to me anymore, it's like I'm waiting for the other shoe to drop. Link to comment Share on other sites More sharing options...
Kayanne Posted June 3, 2010 Report Share Posted June 3, 2010 (edited) Last year, my DD began to be able to talk again very suddenly at the end of her prednisone treatment (with only 3 doses left to do). It was so drastic, that I was sure for the longest time that it was because we had refilled the script with prednisone and began using that...prior we were using prednisolone which was substituted by the pharmacist...now I just think that the cumulative effect of a month's worth of the benefits the steroids--got her to that point in her healing. I am very happy for you! Edited June 3, 2010 by Kayanne Link to comment Share on other sites More sharing options...
peglem Posted June 3, 2010 Author Report Share Posted June 3, 2010 I forgot...(how did I forget this?) that the whole turn around began with her stripping naked right there in the living room. She's doing pretty well so far this morning- and back to the video game... Link to comment Share on other sites More sharing options...
EAMom Posted June 3, 2010 Report Share Posted June 3, 2010 yay! (and interesting!) Link to comment Share on other sites More sharing options...
Mary M Posted June 3, 2010 Report Share Posted June 3, 2010 Peglem, After all you have been through recently I'm just grateful that you are having a break...I hope and pray it lasts. Re: stripping naked...my dd has been in only underpants for 2 days now...but much more pleasant than she had been...this is just post the prednisone burst prescribed by Dr K...so it MUST be the combination of meds (IVIg for Allie and Pred for Mary Rose) and nudity near the summer solstice. Teehee--if we can't laugh through this sorrowful experience we're toast, right!? Link to comment Share on other sites More sharing options...
peglem Posted June 3, 2010 Author Report Share Posted June 3, 2010 Peglem, After all you have been through recently I'm just grateful that you are having a break...I hope and pray it lasts. Re: stripping naked...my dd has been in only underpants for 2 days now...but much more pleasant than she had been...this is just post the prednisone burst prescribed by Dr K...so it MUST be the combination of meds (IVIg for Allie and Pred for Mary Rose) and nudity near the summer solstice. Teehee--if we can't laugh through this sorrowful experience we're toast, right!? Allie has had periods where clothing (at home only TG) was not an option, but when she was doing so badly the clothes weren't an issue. I actually thought when she stripped, "Oh no, here we go again." But she did accept clothes w/o problems the rest of the day and got dressed fine this morning. It was only looking back that I realized the stripping was where she turned it around- like she was stripping away the PANDAS! Link to comment Share on other sites More sharing options...
becjonz Posted June 3, 2010 Report Share Posted June 3, 2010 Very cool! So interesting how it can happen this way. I hope it continues! Becky Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now