What age did you do IVIG?

[airial95]

I was curious at what age some of your kids had IVIG done. I know it's an option that we've already discussed with Dr. Troufexis, but my husband and I haven't seriously considered it just yet because our son is only 3 (and only 32 lbs!), and we're just scared he's too little.

 

I was curious what the youngest anyone has had any experience with it was.

 

Thanks

[SarahJane]

My son was 6 & 46lbs. We suspect he had early onset but we didn't figure it out until the BIG exacerbation hit. (If you pull my string, I'll say that last sentence again. I feel like I say that in every post on here.). If we'd found it when he was younger, & he had been as bad off as he was when got the dx when he was in 2nd BIG exacerbation, & it had been recommended, then we probably would have done it. But that's me supposing. We were at a point where it felt like all we could do, & it'd gone untreated so long & we lost so much time & had dealt with skeptics when we did find it until Dr K. Maybe researching other conditions that use IVIg in young ones could help with the decision.

 

P.S. We are 6 months post-IVIg & while we've had flips & bumps & treated myco p for 6 weeks, we are in a good place. Still some stuff, but it's so minor compared to before.

[SSS]

My dd6 was 40 pounds, and we did the whopping 2.0 dose. They told us that if she had the headache the first night (after the 1st day of treatment) they would not continue on the 2nd day.

She did not, and did fine. Just the migraine (no vomit) after all was done on the 3rd day, which we treated with ibuprofen.

2nd IVIG was at 1.4 dose, 40 pounds, and did not have any after effects (no headache.) But I was dosing her round the clock with ibuprofen.

[butterflymom]

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Edited October 9, 2015 by tampicc

[beeskneesmommy]

We have a boy who is 4, turning 5 in Sept. I recently had a teleconference with Dr. K of Il., who told me that we would not risk our son's health any further by waiting, even for a couple of years. What he did say was that IVig starts to become less effective after around age 9-10. He advised that we wait until age 5. We are likely going to proceed, although we are going to try to exhaust other options. Good to hear that these little ones did OK with it. We find the whole idea and process very scary.

 

On another not re: IVig, is anyone fearful of blood borne pathogens? I know they screen very well for HIV, but I have heard that there are multiple other, less detected blood borne diseases....???