IVIG

[AmberM]

We are starting our third week of a steroid taper and seeing about 30-40% improvement in my dd's symptoms. The first 9 days were insane and then the fog cleared and things started getting pretty nice. Our DAN! is pleased with the progress but really feels we need to pursue hd IVIG. I'm eager to get this going...... I want my kid back! So I'm trying to get a good idea about what to expect with the ivig. I know people have mentioned vomitting and headaches etc. How long should these symptoms last...... is it just during the treatment? Or do I need to take dd out of preschool for a couple of weeks? My dd is 3yrs old and also on the spectrum somewhere. She really does better with with a schedule... especially one that includes getting out of the house and away from baby brother. I'm hoping to get a feel for what to expect also because I would hate to pay for a month's worth of preschool for her to only go a couple of days.

-Amber

[TexasDad]

I'm happy to share what I've learned through personal experience and the ton of reading I've done (although admittedly not near as much as some of the others have done, I'm sure). These basics may be helpful.

 

1- There is a high rate of headaches and vomiting, but it appears these are more pronounced in younger children (< 10 yrs).

2- The above seem to disappear within after 1-2 days of treatment.

3- Time before marked improvement varies greatly, but younger children seem to respond more quickly than older children. It can take anywhere from 2-3 days to 2-3 months to start seeing it. Every case is different as is every child.

4- The typical experience is that it gets worse before it gets better and temporary flare-ups (not relapses) post-treatment are common. So I think it's unrealistic to expect steady improvement immediately with perfect, daily progress. The consensus seems to be that this is actually a good sign, that healing is taking place.

5- After 6 months, you're seeing about 90% of what you're going to get and healing continues to occur up to 1 year.

6- There is a hightened need for vigilance against infection immediately following the treatment and really up to 6 months to a year. I think almost everyone goes on prophylactic abx and some employ a variety of anti-inflammatory measures (IB, diet, etc.).

7- Some pursue multiple treatments anywhere from 1 to 3-4 months apart. This is where those who do can offer better advice. We're making great progress less than 2 months after our treatment and don't foresee any additional treatments at this time. So I don't know under what circumstances those follow-up treatments of IVIG are pursued. Perhaps the children get worse or don't see the marked improvement after 3 months. They may also be dealing with more than one condition.

 

In the case of our 15 yo son, he tolerated the treatment very well with only 1 or 2 vomiting episodes and a slight headache. It was really rocky for the first week after and we also did a steroid burst, which also caused some vomiting. Improvement was minimal and slow for the following week. It was after 2.5 weeks that we really started to see the improvement we were hoping for, although he felt "better" immediately following the steroid burst (color, appetite, and mood really came back). Today, about 7 weeks post-treatment, we are 95% and continuing to make progress.

 

I hope this helps and, again, I know there are others with more experience who can improve on what I've written. I just couldn't bear to see you go without a response.

 

-Mike

Edited January 27, 2011 by TexasDad

[TexasDad]

PS - We also did a 5-week taper of prednisone; starting at 40 mg daily during the first week, then 30, 20, 10, and 5.

 

PPS - Downtime is unpredictable at this point. I would say back to school within 2 weeks would be early. IVIG does a number of their system and with the post-treatment exacerbations, I think you'd be putting her in one day and taking her out the next. Once you feel you're on solid footing and she feels up to it, you could try.

Edited January 27, 2011 by TexasDad