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1 week post IVIG


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Dd6 had IVIG with Dr. B last week. The 2 days of IVIG we saw her tics start to space apart, and she even said that she felt like they were "slowing down". The next day her tics were still less, but we started to see an inability to sit still (something that had been gone for months). The days following, her tics picked back up to every few seconds, although she is having some pauses where she won't tic at all. These pauses are sometimes 1 minute...but can go 5-10 minutes at times. Over all, I'd say she is not worse off than before IVIG, but not too much better. The past 2 days she's started to have some fears again, including nightmares. She also is afraid to be alone in a room. These fears had been gone for months. I've read many times about "turning back the pages" post-IVIG, but it's so hard to see when it's your child. She's feeling very upset that IVIG didn't work! I've explained that it takes time and that this is normal, but it's killing telling her this when I have no idea when or if things will improve.

 

For those of you whose kids had symptoms either pick up, or not improve the first week or so after IVIG, how long did it take to see improvement? Was the improvement sudden, or gradual?

 

She's scheduled to get a 2nd IVIG in November. I really would like to see some proof that this is working before we do that.

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i know how you feel, it is so hard to just wait, and watch. my dd9 is 5 weeks post ivig. her rages are gone, some anxiety too. the rages went away instantly, but the anxiety has been sloooow. her fears are still very bad (has to be with someone at all times too), and she has no focus. a recent fever turned her into a hurricane! but it has only been 5 weeks. i really think we have to keep remembering to give it time. I get very down too and say to myself that it is not going to work anymore, this is it. But we have to keep an open mind, and wait and see. next week could be great, you never know. hang in there.

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We had some odd hyperactivity show up too. things will get better. Healing happens the same way the disease does - its saw tooth. Good moments and then bad. Good days and then bad...good weeks then some bad days.

We've had some bad days here following a virus (at 7 weeks post) but, nothing like he would have been prior to ivig. And, the symtoms are just wierd now, not as predictible. And oddly again - just like post ivig - yesterday -very hyper, just like the first 3 or so weeks post ivig. And, hyper isn't one of his normal pandas symtoms.

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Hang in there. I think 1 week post is always the worst for us. We just had our 3rd sat night, and waiting for the herx. Was the worst after the 1st, depression, rage, manic happy (disturbingly) We are doing aggressive tx every 4 wks, have 1 more left. We just started to see the most improvement over the last 2 wks or so, which makes us 7-8 weeks past the 1st ivig. Hang in there, it seems like slow progress, and sawtooth like NORCALMOM said. Just remember you're not just masking symptoms, you are going for actual "healing" and that takes time. Best to you!

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The first 2 weeks were miserable for us (we are now 5 weeks). It got slowly better and now we see glimses of what may be to come--hang in there. I read a study (small) that said 70-90% improvement between 12 and 16 weeks post IVIG. I keep a calendar and am marking off the days!! We used Advil a few times during those 1st couple of weeks and tried to make sure he slept and ate enough.

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Thanks for all of your replies. Surprisingly dd arrived home from school today better than expected. Her main tic is a sniff/cough combo, and it has been every 5-10 seconds for months (with exception of the 2 days she received IVIG). Tonight, it was SIGNIFICANTLY less frequent...maybe only 100 sniffs & coughs the entire afternoon/evening! She still having other motor tics, but to be around her and hear silence for long stretches of time was amazing.

 

Now this could all change tomorrow, but at least tonight I'll go to sleep on a positive note :)

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Thanks for all of your replies. Surprisingly dd arrived home from school today better than expected. Her main tic is a sniff/cough combo, and it has been every 5-10 seconds for months (with exception of the 2 days she received IVIG). Tonight, it was SIGNIFICANTLY less frequent...maybe only 100 sniffs & coughs the entire afternoon/evening! She still having other motor tics, but to be around her and hear silence for long stretches of time was amazing.

 

Now this could all change tomorrow, but at least tonight I'll go to sleep on a positive note :)

 

i am happy you could find a little peace :)

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