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Turning back the pages


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My daughter had HD IVIG 12/6 and 7 (11 days ago), did really well with it and had a great week last week. We are having significant periods (more often than not really) where we really see the old her, she's sleeping well, more reasonable and generally happy, fun. However, there are definitely still anxieties there (refuses to take the school bus, doesn't want to go to her gymnastics class) and between Saturday and this morning, we've had three pretty major bumps in the road where an anxiety (clothing OCD) or challenge (some cogntive stuff over homework) takes over and she gets first mad, then really sad and withdrawn. The doctor seems to think that this is a bit of the "turning back the pages" people talk about and that it should get better. I'm trying to be optimistic, but am simply heart broken watching her like this. For those who have done IVIG, did you experience this type of up and down in the initial weeks? How long did it last? Did you find certain symptoms held on longer than others? Would love any encuoragement folks could offer from the other side of the roller coaster!

 

Thanks.

 

Hayley

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DS is 18 days post IVIG #2. The pages are nearly torn off. He is raging, severe ocd which causes much of the raging when he can't complete a compulsion like buying a black ops app for his ipod. He has quit riding the bus to school. He's depressed. We've had to up his melatonin to help get him to sleep. He's saying things like he's stupid, he stinks (literally). Its been VERY tough this time around. We did not see such severe turning back after #1 but he was not in exacerbation during #1 like he was for #2.

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It seems like my daughter experienced "turning pages" until about week 10 post IVIG. She continue to improve gradually even now and it has been 8 months since. She is back to being my little girl I know and love. I remember it being so heartbreaking watching her lose ground, but stay patient and strong...she will improve, it just takes time.

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Hayley, I'm happy to hear that IvIg went well and that your dd seems to be having an improvement... An improvement so soon after IvIg seems to be a good sign, I would think. I feel like from what ive read that a lot of kids take a while to show any improvement at all after IvIg. I was wondering if your dr. had been able to explain to you why the "turning back of pages" even occurs? I asked about this very issue today when we had a call with Dr. Bs office and they basically couldn't answer it. I am going to start a new thread about this because I think it's an important issue and it seems that even among the pandas docs, there is no consistency as to what can be expected after this.

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landamom, I didn't ask Dr. L about why the turning back the pages happens, but anotehr trusted resource I have been in touch with explained it tome like this:

 

"These are physical, real autoantibodies, like grains of sand STUCK onto the basal ganglia. What you are seeing, especially the old feelings, are being peeled away from the amygdula (at least recent research shows this) and the basal ganglia nerves."

 

I still don't totally get it, but I guess there's some science there! I will ask Dr. L next time I meet with her. In any event, enough of us have witnessed this that there's no denying that SOMEthing real is going on. Just hope it passes quickly!

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  • 2 weeks later...

landamom, I didn't ask Dr. L about why the turning back the pages happens, but anotehr trusted resource I have been in touch with explained it tome like this:

 

"These are physical, real autoantibodies, like grains of sand STUCK onto the basal ganglia. What you are seeing, especially the old feelings, are being peeled away from the amygdula (at least recent research shows this) and the basal ganglia nerves."

 

I still don't totally get it, but I guess there's some science there! I will ask Dr. L next time I meet with her. In any event, enough of us have witnessed this that there's no denying that SOMEthing real is going on. Just hope it passes quickly!

 

 

 

Hi Hayley-- Give it some more time. Our youngest d had IVIG about 12 weeks ago now and we also went crazy for the first 9 weeks--really bad raging, destruction, etc. She also had anorexia as a result of the PANS episode. We were really despairing and then about week 10 post IVIG she turned a corner. She started eating - for no apparent "new" reason, and her behaviors started to improve. We had a reasonably good Christmas, still some PANS but to a PANDAS parent it was much -- much -- beter then she was pre IVIG! Hang in there, and look towards weeks 10-12 would be my encouragement.

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Thanks for the encouragement. She's definitely moving in the right direction, albeit with some bumps in the road. I'm finding she is really trying hard to push herself to overcome some of the OCD stuff when she's feeling up to it and I think that maybe some of the bumps are the result of her just exhausting herslef as she does that. Hoping we see more and more recovery as we get deeper into 2013! Crossing my fingers for the transition back to school tomorrow after this LONG vacation and a very late night last night for her (being tired is a major trigger, but we didn't have the heart to keep her back from the new year's eve party we were attending...hope we don't pay too badly for it!). I am sure we're not the only ones approaching tomorrow with some trepidation! Good luck to all!

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