How bad does a child have to be to consider IVIG?

[JoyBop]

Please share with me how symptomatic or functional your child was when you made the decision to pursue IVIG. I know there are expenses and risks and I am trying to wrap my head around this. We are seeing a pandas ID doc in Aug and I want to get a grip on wether this is something I want to pursue. I don't believe my I insurance co will pay for it and dont even know of this doc prescribes it but I wanted to get a heads up from all of you on when you pursued IVIG.

[LaurenK]

severe enough for the symptoms to have a negative impact on his quality of life.

[pr40]

after smaller weapons (abx, steroids, etc.) could not help and exacerbation continues.

we are always on the verge. one day we think that we should do IVIG, then the exacerbation passes.

but remember that IVIG is possibly only a temporary relief.

[JoyBop]

We haven't tried steroids yet. I suppose that would be our next bet. We have been reluctant bc he was on them quite a bit when he was younger. We will have to consider that next.

[LaurenK]

Joybop, I have had IV steroids 3g, 2g, 1g- nothing lower than that. I've also had IVIG. I can tell you from my own personal experience, steroids in combination with IVIG work best. With steroids alone, I always relapsed within 6 months because they do not modulate the immune response, they simply take down inflammation. IVIG on the other hand does modulate the immune response. High dose steroids are extremely difficult to come off of and only sometimes to neurologist prescribe a taper. It's truly a horrific withdrawal, so if you do high dose steroids, be aware of that, and be ready. Also, for me, there was a turning of the pages for both treatments.

Edited July 29, 2013 by LaurenK

[airial95]

My son was able to hold steady at about 80% recovery before we considered IVIG. He was only 26 months when he was first diagnosed, and we were too afraid to try IVIG, steroids, or Plasmapherisis on him at such a young age. And he responded very well to abx, but everytime he would get close to 100%, he would get strep again (it was a chronic problem for us). We saw him at 100% briefly after T&A surgery in 2011 - which gave us hope. But he continued to get new strep infections and eventually, abx alone was only getting him to between 80-90%. Was he functional - yes. Completely. He went to school every day, he seemed normal to most outsiders, but he still had some major OCD - and a fixation on playing video games that was unnatural, even for a 5 year old boy.

 

We finally did our first IVIG in April - and we were terrified that we were going to "rock the boat". We had things pretty stable - not perfect, but stable, and we were functioning well as a family. We were afraid that we would see that regression with IVIG that some people see - getting worse before it gets better and it scared the heck out of us. The night after his infusion when he was suffering with migraines and vomiting - I remember locking myself in the bathroom sobbing asking what had I done to my child. But less than 24 hours later he was at 100%. And he stayed there for 8 weeks (when he was supposed to go for his second IVIG but a scheduling mishap pushed it out another 4 weeks). He just went for his second a few weeks ago, and he's doing well. We saw that immediate improvement, and then he has regressed a little bit - but it turns out for about a week and a half he has been hiding some of his medication every day - so the doctors think he's just reacting to an exposure.

 

It was a hard decision - and in hindsight I wish we had done it sooner. But we had to get to a point where we were comfortable with it. It was the only way we felt we were going to get back to 100% - we didn't want him to have to live with "good enough" any longer.

[Mayzoo]

Personally, I want to get most the infections and viral titers to within normal or near normal before we do IVIG. Once we get there, I can assess what my child's new normal would be, then I will be proceeding with IVIG or not at that time. We should be able to get it covered since she is considered immune compromised as well.

[JoyBop]

That is interesting that many wait for the child to be 80% better. That is exactly where my DS is. He can function fairly well but is ridden with OCD and anxiety. He's able to hold it together but on the inside he is still a mess. I was wanting IVIG when things were really bad but now that he is at 80% I feel like maybe we should leave things alone. I'm so grateful to this forum and heating all of your journeys.