What were the first signs you knew your first IVIG was working?

[lmkmip67]

It has been a week for Ian, and he has been grumpier, a bit more OCD, a few tics popping out. Nothing horrible, though. The strange thing this morning is he is sitting playing with legos, with a concentration he never has, ever. Complete with sound effects. he was never that kind of kid and never had real imaginative play, he was more a sport kids. I am sure I am reading too much into things, but I just noted it.

 

It just made me wonder what the first signs you may have noticed when you realized IVIG was doing SOMETHING?

[NancyD]

Initially, our tell-tale signs were elimination of daily violent rages, more even moods, not argumentative, diminishing tics, and willingness to sleep in her own bed. But as days and weeks went by there were other signs like improvement in social skills, ability to focus, better grades, and more insightful/reflective thinking.

[philamom]

Initially, our tell-tale signs were elimination of daily violent rages, more even moods, not argumentative, diminishing tics, and willingness to sleep in her own bed. But as days and weeks went by there were other signs like improvement in social skills, ability to focus, better grades, and more insightful/reflective thinking.

We are the complete opposite here. For 6 weeks after the ivig we deal with increased oppositional behavior, hyperness, impulsiveness..

[butterflymom]

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Edited October 5, 2015 by tampicc

[NancyD]

I should have added that we had very little improvement until the 10th week following IVIg. This was consistent with most subsequent HD IVIg infusions. Conversely, with LD IVIg infusions things got worse.

 

Initially, our tell-tale signs were elimination of daily violent rages, more even moods, not argumentative, diminishing tics, and willingness to sleep in her own bed. But as days and weeks went by there were other signs like improvement in social skills, ability to focus, better grades, and more insightful/reflective thinking.

We are the complete opposite here. For 6 weeks after the ivig we deal with increased oppositional behavior, hyperness, impulsiveness..

[lmkmip67]

That is interesting to hear the different outcomes. Dr. B seemed to think we would see some improvement before 10 weeks, as we already have a 2nd treatment scheduled in 8 weeks. Ian's OCD sure is worse right now. So I am hoping that is the turning back the page syndrome. And not the new normal. I will keep updating, though, as it may be helpful to someone else.

[AmbersMommy]

That is interesting to hear the different outcomes. Dr. B seemed to think we would see some improvement before 10 weeks, as we already have a 2nd treatment scheduled in 8 weeks. Ian's OCD sure is worse right now. So I am hoping that is the turning back the page syndrome. And not the new normal. I will keep updating, though, as it may be helpful to someone else.

 

We see Dr. B. as well. My dd just had her 4th IVIG this past week. Each time she has had it there has been a little different response. The first time she really regressed to close to her worst state which was OCD behaviours, and basically acting autistic along with not sleeping by herself, not sleeping with her light out, not sleeping at all basically, and also not going to the bathroom by herself. Then about 6 weeks later she was better than she was prior to the IVIG. Each time she gets the IVIG at about 6 weeks she seems better than she was before she got it. It has been a really slow process. We did have one glitch. The time before this when she got IVIG she was doing fantastic 6 weeks afterwards. She was better than I have EVER seen her. Then, she was taken off of one of her antibiotics. Within 4 days she was regressing again. She also has Lyme and the doctor that was treating her Lyme took her off of the antibiotic. It was devastating. She never did make it back to where she was before she was taken off of the antibiotic. Now things are looking up though. She is having a worsening of her facial tick right now, and she showed some anxiety today about going to the bathroom by herself. However, she woke up at 4:00 AM because the birds were too loud and she went back to sleep!!! She almost never is able to go back to sleep once she wakes up no matter what time of night it is! I am so excited! She is also communicating better, and her short term memory seems better. Anyway, good luck to you!!!!! I hope this helps!

[sebrown1126]

We are two weeks post IVIG. My son has been a big rollercoaster. Sometimes, we get glimpses of what his "new normal" will be...and he's calm, happy, no rage, no urinary urgency, no "voices in his head." It's absolutely wonderful and I want to cry tears of happiness every time I see him like that.

 

Sometimes, out of the blue, we'll get a horrible day where he's screaming his head off and hitting/punching for no reason...and wonder if the IVIG was a flop.

 

I don't understand it. What is the biochemical reason as to why kids hit a rollercoaster after IVIG? Is it a series of detoxes? Is it the headaches coming back from the IVIG?