How often have you done IVIG

[Califamily]

Hi

 

Just wondering for those in the last 3 years -- how often have you done IVIG and at what dose? How old was your child and what was your success?

 

My son appeared to be responding but at 4 weeks he had an exacerbation. I know Dr. K usually thinks 12 weeks but curious your perspective

 

Thanks!

[beeskneesmommy]

2 total. #1 Sept. 2012 just after turning 6 and another May 2013. For us, there was a def exacerbation each time that lasted quite a while. 14 weeks was our magic mark for looking good consistently, each time. continued to show improvement for 6-8 months. 2nd IVig was to "push him over the fence". He had improved greatly but was still having mild flares, although much less frequently. That was almost a year and he is looking great...however, the addition of going GF last Aug. 2013 allowed us to completely turn the corner. I think it is a combo, rather than just one intervention, that helps our kids heal. He is very well and we do not plan another IVig as it is not needed. He is not perfect, he still reacts to gluten and seasonal allergies are severe. However, the reaction is usually in the form of ADHD-like symptoms and manageable. they are also infrequent. Hope that helps! Remember that each kiddo responds differently for a plethora of reasons! -Kath

[qannie47]

My ds had one IVIG. He looked great for 12 weeks or so then had a small popcorn flare, a couple of days. Then at week 16 he had the worst flare to date. I was rather disappointed. However, when the reports came in from fall conference, clinical studies showed that IVIG takes at least one year to do its thing, maybe a little longer. In the meantime, flares are gong to happen. I reset my expectations. I had hoped that a flare would never happen again. This is really not a good expectation. The good news is that since then, my ds had done GREAT. I will share that he did have a T/A about 4 months ago. Since then, he went to another level of great. I think it was a combined level of IVIG and t/a.

 

My point is, as research dribbles in, it looks like more then one IVIG in typically not necessary.

Edited April 13, 2014 by qannie47

[Califamily]

Thank you for your replies. As many of you probably experience -- it is the false hope of seeing recovery and then to see it slip through your fingertips.

 

Instead of pleasure in your days, it is filled with despair and hope. This is quite the rollercoaster

 

I read a NYTimes Article where the main point is that you learn more from suffering than only knowing happiness. At this point, happiness for an extended period of time would be wonderful. And, hearing from you who now have had sustained success-- that is reason for hope and happiness. Thank you to all for your thoughts.

 

 

[nicklemama]

Twice. The first time, in 2011. DS was 7. It was really rocky the first three months post, then things got better. He was doing pretty well when he got pneumonia 18 months later and things went rapidly down hill. He had IVIG #2 in Nov 2012. Another rocky recovery and we didn't get the results we did after the first. Found out he had ehrlichia and anaplasma 4 months after IVIG #2 and started treatment. Found out he has/had lyme a few weeks ago. He's done really well this past year after treatment for his coinfections, which also treat lyme. Dr. K did both his IVIG's.

[Hmrz]

My ds9 had 1st ivig 61/2 weeks ago and every setback is a heart break. I will say he is back at school after a 5 month break and is almost off all of the pysch meds we put him on before dx. I have really taken comfort in the experiences of other parents who have shared their recovery progress. It's so difficult when great days become dark in seconds. Overall I have to believe he is getting better and stronger.

Califamily are you SoCal?

[Brese]

Once at age 7 had IVIG, had mild set back at 4 weeks. Each month after that recovered from different symptoms. By 6 month most symptoms were gone. One year later it is like it never happened. Once she gets exposed to strep she has mild symptoms for the first three days. We choose not to keep her on antibiotics they make her ill. By the third day on the antibiotics they symptoms are gone. We always found that Advil seemed to help best when she was having symptoms. Going on 1 1/2 years with no symptoms.