IVIG- procedures, meds, etc.

[thenmama]

After a series of ups and downs and a loooooooooooong (almost 10 month) wait, ds is finally going to have IVIG--got a message last night that as soon as we say green light the doc will order it!

 

We've been through IVIG with dd, so I am familiar with the basics... but this one is being ordered by our peds instead of the PANDAS doc and it's been a while since dd had hers so I just want to check in with others to find out about how they prepare, what the PANDAS docs' latest protocol are for things like pre- and post- procedure medications, etc.

 

We've already begun operation hydration at home and I've stocked up on fluids to bring with us on treatment days.

When dd had hers, they dosed with Benadryl (and I am pretty sure Tylenol) on the mornings of treatment.

When she experienced side effects (headache/vomiting) after day 2 when treatment was done, they gave her Ibuprofen and Prednisone (which she'd been taking going into treatment).

 

Here are some specific questions I have for anyone who has a moment to reply to any of these.

 

-Has anyone's doc stopped abx such as Clindamycin in advance of treatment? Do they just skip on day of treatment? (I can't remember what we did with dd's abx going into treatment, and hers is Augmentin, his is Clinda so I don't know if that would make a difference). I didn't see Clinda listed as an interaction, but will research that further to be certain, too.

 

-Does anyone have experience with how abx are handled after-- especially in a case like ds's where the child hasn't been able to take a "lighter" hitting abx such as Augmentin b/c of infection recurrence? We knew dd would be doing Augmentin and this wasn't an issue going into hers.

 

-What are your doc's pre- and post- procedure medications? Benadryl? Does your doc use Tylenol, Ibuprofen, anything else?

 

-How about Prednisone? Ds is not on it now, dd was already on it for symptom relief going into treatment (I don't think she took it on infusion days, so it was before, and then after when her side effects kicked in) I have pred on hand because or doc rx'd it for him yesterday-- b/c we didn't know how long the admin part would take and he's miserable. I haven't spoken to her since we got word, and I just picked it up last night so he hasn't taken it yet and we can go either way.

 

-These two are big ones for me:

1) Did I read something about Gamunex and it needing something else dripped with it, or not dripped with it-- or was this info old, or not relevant, or maybe I invented having seen something like this? Anyway, if there is something like that, even if it should be obvious to the infusion providers, I'd like to know. I know this product isn't used as much around here and this whole treatment is new to them for this-- and in general I think it's always good to know as much as possible and be able to keep an eye/ask questions

 

2) About the rate of the drip: Dd had major side effects following the second day of treatment. I know this is often the case/timing for side effects. But, I also know that we had a different nurse the second day and there were times that we had concerns about symptoms/side effects/things dd was experiencing during the infusion and had to ask for help. This nurse also sped it up more than the other had and was not attentive enough-- which made me wonder if the speeding up was more for the procedure or more so it would be over (this among other concerns- we're not doing it there again). Is there any standard for the rate at which the infusion is given? Does it matter? Is there any advantage, other than how long it takes to complete, to increasing or reaching a certain rate? I'm not in a hurry and my gut (wrong or right) thinks the second day hurry may have caused or contributed to the really awful side effects dd had the second day.

 

Other than those specific things I'd love to hear about the different PANDAS docs' protocol and anything else you'd like to share or tips you may have would be welcome and appreciated.

 

Our ped may already have some of this worked out (I haven't had a chance to talk to her since I got the message), but I'm hoping to get some PANDAS-specific feedback before we talk later on so I'll have a sense what the PANDAS docs are doing now and if there are any PANDAS-specific differences or any questions arise she can investigate or consult as needed before we put this thing in motion.

 

Thanks all!

[beeskneesmommy]

Hi. we just had IVig at Dr. Latimer's. We were advised not to stop the abx. What really helped w/the side effects was to have steroids and Zofran (anti nausea) IV with the fluid bag just prior to the Gamunex. DS6 was also given Benedryl and Tylenol orally. After the IVig, we kept up with alternating Tylenol and Ibuprofen every 4 hours and oral Zofran every 8 hours. We continue this routine throughout the IVig process and for 3 days afterward. He had headaches on the day after IVig was over, but they lasted for several hours and were gone the next day. I really liked the idea of preventative meds instead of waiting to have nausea or horrendous headaches and then trying to reverse the side effects. Hope that helps, Kath

[thenmama]

Thanks, Kath, very helpful info. Much appreciated

[kos_mom]

Adding my thaks too, Kath. Very helpful--fingers crossed DD will get IVIG next week, but at G'town instead of Dr. L's because of insurance. Now know all the sutff to make sure gets ordered before we go in.