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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?

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totally great!!!Awesome!!!Are you keeping a journal?

Melanie

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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?

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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? :D

 

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! :huh:

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Wonderful!!! Hope it continues for you :huh:

 

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.

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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 by Kayanne
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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...

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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!?

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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!

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