Strange

[becjonz]

Very cool! So interesting too that it can happen like that- so suddenly.

I hope it continues!

 

Becky

 

 

***Edit: Grrrr! sorry for double post. It froze up and looked like it didn't post ***

Edited June 3, 2010 by becjonz

[peglem]

We saw a down turn on Saturday...kinda horrible episodes of (tics?) smashing her elbows into her hips. Of course, I was scared that it was all coming back again! That evening she started her monthly though. And no matter what I gave her for sleep- she just COULD NOT sleep- kept moving just as she'd start to drift off- and she was so exhausted and frustrated that she couldn't sleep. I wasn't too happy myself! Finally, I held her still and she fell asleep at 2:30 in the morning.

 

Sunday, I kept her on ibuprofen all day, and some valium, occasionally. She would start her fixation-on-object-that-is-throwing-me-into-a-panic thing, but I was able to talk her through it every time, and get her to redirect herself. Today- not a single problem! Only 1 dose of ibuprofen this morning and no valium all day! So, probably cramps with a PANDAS twist- but I can deal with that once a month for a day or two!

[amy s]

peglem, you are such an awesome Mom! I am throwing out hugs and thoughts and kisses for you and your family that Allie feels better soon and you can get some REST!

[Stephanie2]

Peglem, I am so glad you are seeing an improvement. Also, I wanted to say that when my 5 yo had IVIG in late March of this year (1 mg/kg), exactly 3.5 weeks post ivig is when he suddenly woke up a new kid! It was really amazing. However, I still don't know exactly what did it. The day before the sudden turnaround I increased his spironolactone (anti-inflammatory, immune modulatory) so I was assuming that is what did it. However, our DAN practitioner felt that it was a combination of both. He said that in his experience, the kids start to respond to IVIG right around the 3 week mark. I guess time will tell for us.

 

Best of luck and keep us posted!

Stephanie

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?

[peglem]

We're doing another 1.5mg/kg this thurday and friday...

[kimballot]

Hoping ti goes well for you... Is Allie still doing well since she stripped away the PANDAS?

[peglem]

Except for Saturday w/ cramps- Sunday was pretty good and Monday has been great!