Question about timing of IVIG

[britmom]

We are beginning to think seriously about IVIG for DS9. But I'm wondering if now is the best time to do it. He has severe pollen allergies (trees and grasses) which always make him worse, normally from around February to August. Would it make sense to leave IVIG until the pollens are gone or do you think it makes no difference? Just wondering if doing IVIG during high pollen season would put extra burden on his body that would somehow make the IVIG less successful???

[sf_mom]

I have heard IVIG can help with allergies (or at least help PANDAS which might be cause of allergies)... plus heading into summer there are less exposure and more likely an opportune time for your child to heal. Our son was exposed to strep at least once a week from Feb. 1st through March. Exposures are just now starting to let up with the warm weather.

Edited April 7, 2010 by SF Mom

[JAG10]

SF Mom,

 

May I ask, how are you finding out about strep exposure at school? Does your school have a policy where families are supposed to report strep to the nurse or did you do something to arrange this at schoolor with parents directly?

 

I've never been notified about strep in my daughter's classroom, but I've never asked to be either. Since Court is asymptomatic, I suppose I need to form a plan. One more thing; is pink eye always, sometimes or never strep. I don't get strep that I know of, but I do work in an elementary school and will get pink eye a couple times a year.

 

Thanks for the help.

jill

[coco]

I have heard also that IVIG can help with allergies. I would opt to do it sooner and have the summer to heal and recover without all that school exposure. Give yourself at least 3 months to have your child (and you!) to recover from ivig...and then start the big slow heal!

[LNN]

Funny you should post this today - it was a topic of conversation in our house this morning. We are going to do IVIG for my son (7) who's been battling PANDAS for almost two years. We did plasmapheresis last August and it helped a great deal. It got rid of some pretty severe tics. We had two exacerbations this winter due to exposure to strep (not actual infection thanks to prophylactic antibiotics). Both were brought under control with prednisone. Since pex, we've seen the severity of an episode drop dramatically. But since he's now a canary and we can't possibly keep him free from exposure, we know that more episodes are in our future if we don't take the next step.

 

But since he's currently in remission, we have the luxury of choosing when to do the IVIG. We considered the summer, with the thought that months of "calm" and no pressure of school would be a good time to both "stir the pot" (knowing there's a chance he will get worse for a few weeks post-ivig) and a good time to heal. But the flip side is that if donor antibodies are only in the system for a few months, then doing IVIG in the summer might be a waste. If the IVIG antibodies are "tutors" meant to go in and re-teach the immune system, and there's no exposure while they're hanging around, then does the immune system really get taught anything? Is it better to wait until the fall when the tutors actually have a real germ battle to fight, so they can impart some real wisdom to the immune system before they fade away?

 

I asked two of the PANDAS doctors I've worked with and both had to stop and think about it, since usually you do IVIG as a triage - when your child is in crisis. Time of year isn't really something they thought about. But both came back with the same answer - if they could chose, with no crisis dictating treatment, they both said they'd do it in the fall, so there was a boosted immune system just prior to the germ onslaught, or in the winter.

 

This is just an off-the-cuff answer. It wasn't backed by any research. But the idea of the large dose IVIG being used for PANDAS is to shut the immune system down and re-boot it, to demolish the old antibody factory that's been making faulty strep antibodies and start up a new factory with workers that know the correct recipe for fighting strep and not the basal ganglia. (Conversely, early summer would probably be ideal for pheresis, to let the system stay calm and unexposed for as long as possible).

 

I'm not suggesting summertime IVIG wouldn't work. It was only a hypothetical conversation and I'm sure there would be lots of circumstances where any time would be appropriate, or where waiting would be ill-advised. But in our particular situation, with our particular history, it seemed to make sense for us to wait until late September. Yes, it will screw up school, but barring any crisis, that's our tentative plan.

[britmom]

Thanks for the replies - it's great to hear other people's opinions on this. Our DS9 is a zebra! Just found out in the last few months that he has PANDAS after believing he had TS for 5 years. He is not a sudden-onset case. He does not have a lot of highs and lows - just slightly better and slightly worse times of year, but never a really good day at any time. The only obvious factors that make things worse for him are his environmental allergies and stress/tiredness. So we do kind of have the luxury of planning a good time for IVIG. I wish someone could say for sure if it's better to do it when there are fewer of that particular child's 'offenders' around though. I still don't get the science behind all this... but it seems to me that it would be better to do IVIG when the body is not already in turmoil from allergies that are seasonal. I really wish someone could give a definitive answer to this..

[EAMom]

I would vote for doing it in the mid or late summer (that's what we did)...so you child has a couple of weeks of recovery before school starts. I think it would be horrible to be in a new class in September, and then have IVIG and then have all the crazy turning back the pages while you child is trying to get settled into school.

 

But, my dd is older...4th grade now. If she were in K or 1st, I might be less concerned about her missing a week or two of classes if I had to pull her out b/c of turning back the pages.

 

Re strep notices: I have in the past gotten strep notices from the school (CA public)...so I think that is a "reportable dz" (like head lice or pink eye). But, I also know for a fact, a child had strep in my younger dd's class 1.5 weeks ago...and we have not gotten a notice! So, I don't know if it is a matter of the parent knowing to "report" the strep to the office...or if the office just didn't bother to send out a notice this time? I think that is something I should ask about! I'll bet a high percentage of strep cases go unreported (even if they are diagnosed).

Edited April 7, 2010 by EAMom

[sf_mom]

Our school notifies but we also sent a letter to all the parents in his class explaining the situation. His school is EXTREMELY helpful in notifying us. Pink eye is often strep and I have noticed a 'flair' in symptoms when he is in close association with a child who has pink eye.

 

SF Mom,

 

May I ask, how are you finding out about strep exposure at school? Does your school have a policy where families are supposed to report strep to the nurse or did you do something to arrange this at schoolor with parents directly?

 

I've never been notified about strep in my daughter's classroom, but I've never asked to be either. Since Court is asymptomatic, I suppose I need to form a plan. One more thing; is pink eye always, sometimes or never strep. I don't get strep that I know of, but I do work in an elementary school and will get pink eye a couple times a year.

 

Thanks for the help.

jill

[sf_mom]

I also think it will depend on how strong your child's immune system is post IVIG. We had our first IVIG late September and at 6 and 8 weeks post treatment he was exposed to strep at school. He was not strong enough at that point to recover from exposure and we saw slow and steady decline in his progress and had to retreat with IVIG at 8 weeks.

 

Honestly, its a tough call. It is a long healing process and it takes a full 12 weeks for the immune system to fully take over post IVIG. Wishing you all the best.

 

-Wendy

 

Thanks for the replies - it's great to hear other people's opinions on this. Our DS9 is a zebra! Just found out in the last few months that he has PANDAS after believing he had TS for 5 years. He is not a sudden-onset case. He does not have a lot of highs and lows - just slightly better and slightly worse times of year, but never a really good day at any time. The only obvious factors that make things worse for him are his environmental allergies and stress/tiredness. So we do kind of have the luxury of planning a good time for IVIG. I wish someone could say for sure if it's better to do it when there are fewer of that particular child's 'offenders' around though. I still don't get the science behind all this... but it seems to me that it would be better to do IVIG when the body is not already in turmoil from allergies that are seasonal. I really wish someone could give a definitive answer to this..