About to have first IVIG and freaking out- advice?

[writergal]

Our 9 year old son is about to have his first IVIG, next week, Friday, December 2nd. I'm freaking out a bit about the severe headaches and vomiting that occurs in many of the kids that have an IVIG procedure. One of our local parents that is a doctor treating his own child has advised that he used steroids, before, during and after his son's two IVIG's and had very minimal headaches and issues. We're hoping for the same as our son is the "unusual" one that no one ever seems to be able to get a handle on. If there is a complication, he seems to always get it or have it.

 

I'm curious about when- how much before the IVIG did doctors start pre-treating with steroids, motrim, benadryl, etc.? Just a few days, a week?

 

I've become quite the thorn in our doctor's side as I've been questioning him a lot on the protocol and am not entirely happy, but know that we need to move forward.

 

We were fortunate that our son was diagnosed with mild neutropenia as this is making it much easier for the insurance process.

[thenmama]

Hi writergal,

 

I get your concerns-- btdt going into IVIG. Our family is also in the running for the "most likely to experience intense or unusual side effects" award, and we seem to be contenders in the "medical anomaly" category, as well

 

We've only gone through IVIG once so far with our dd, who was 11 at the time-- though our ds, 7, will be doing it sometime soon. Our dd did end up with a (thankfully brief) episode of headache/vomiting. Working with our doc we got her through it very quickly and have a plan to try to prevent it should she need another IVIG. One problem we had was the info I'd gotten from the Infusion staff said not to take something specifically (maybe Motrin?) so I didn't give it until I was able to get a doc on the phone when their office opened (my dd started feeling badly at around 5 am the morning after she'd completed the IVIG-- hers was done over 2 days). She hadn't had pred after the treatment til the doc called us back, so that's one thing we'd do differently next time. Once she took the meds, she rebounded quickly and it was smooth sailing from there.

 

Based on our own experience, my suggestions:

 

1) Steroid. She was taking it going into the treatment, but I think one of our mistakes was that she hadn't had it after the treatment til we spoke to the doc-- that seemed to make a huge difference.

2) Hydration--- make sure he's really really well hydrated before, during, and after the treatment.

3) Benadryl. They had our dd take Benadryl prior to the treatment, and the day following when she was having the side effects. Next time we do this with one of our kids, I will probably wake them to administer on schedule, since it was on the overnight stretch when it had worn off that our dd's side effects kicked in.

4) Tylenol-- I think our infusion center had dd take Tylenol on the days of procedure-- she took Ibuprofen afterward, though.

5) Ibuprofen.

6) Prior to the procedure, our doc gave us an rx for an antiemetic type of medication-- may have been Zofran or something similar-- to have on hand should we need it afterward. That helped, too, as it calmed the nausea/vomiting allowed her to keep down the other medications she needed to relieve the side effects.

 

My other advice is to make a clear plan in advance with your doc. For us, we were dealing with multiple people--our local ped specialist who ordered it, the PANDAS doc who advised it, the Infusion Center team, etc. So I recommend having your point person named up front if there are multiple docs on your team, as well as a backup emergency contact should the primary doc not be available (unless they're always on call). And with your primary doc, make a clear plan for medications to give before, during, and after treatment, and fill any rxs/pick up any OTC meds you may need for side effects in advance of the treatment so you've got everything you need on hand. You can also work out a plan of action for the side effects and meds-- so you're clear on what to do if a headache hits, what to do if he vomits, etc. That way if it happens at odd hours, you can take action for your child immediately without waiting on a call back.

 

 

I'm sure someone with more experience will also chime in with more to say...

 

HTH,

 

TH

[bigmighty]

Hydration is key. DS had a very significant and long-lasting headache after the first IVIG. For the 24 hours prior to the 2nd IVIG, we were told to give him at least 8 ounces of liquid every hour while he was awake. After the 2nd IVIG, the docs ran IV fluids for an hour. He was fine. No symptoms whatsoever.

[melanie]

Well we probably win for the most IVIGs on this site so heres my advice

 

Drink lots of water before the procedure..LOts and Lots

it will help with the inserting of the IV line and with any headaches

 

Dan had steroids for the first few at a high dosage and as time went on they lowered the dosage.

 

Doesnt get Benadryl any more but did for the 1st year.(hes had IVIG for 2 1/2 years every 21 days now)

 

Advil after the infussion just give it even if you dont see a headache .It may come so if he can tolerate it do it!!

 

Glad you are getting the IVIG let us know how it goes..

 

Melanie

[nicklemama]

Fluids should be started right after the IV line is in place. Those run for a while, it was an hr w/ Dr K, before the IVIG was started. Benadryl was given by mouth while fluids were running. We did not have IV steroids or steroid of any type but I believe those are started in the IV line before IVIG also. Fluids run after the IVIG bags are finished. Afterward we gave lots of gatoraid. My DS did not get terribly sick afterward. He did vomit twice 18hrs after the IVIG was over and he had a headache but it was controlled w/ Motrin. We were given a script for steroids post IVIG but did not need to use it.

[writergal]

Thank you so much! Our doctor is going to give him a steroid in the IV 30 minutes before starting and then after the IVIG is completed. I've been driving the doctor crazy with questions as I've not been pleased with some of his answers. I'm being polite- but I'm sure he will be very glad to have the procedure finished and me out of his way.

 

Thank you so much for the tips- we will make sure that our son is drinking a lot of water before, during and after. Our son tends to get more hyper with benadryl- did anyone else have a child that has this same experience?

 

And I will also make sure that I have the plan more solidly in place prior to the IVIG- meaning if he is having a problem I don't want to wait for the doctor to phone me back. I will ask for and have prescriptions in hand in case of severe headache or vomiting. It takes forever for our doctor to get back via e-mail, and I'm not too fond of having to go to ER because the doctor won't get back with me.

 

Thank you so much for the great tips. I'll make sure we implement them.

 

Julie

[nicklemama]

Benadryl does not necessarily make DS more hyper but it does not make him drowsy. It did not seem to affect either of the other two children getting IVIG at the same time as DS. DS was 7, they were 8 and 12. All three were up, around and pushing their IV stands around to visit each other.

[formedbrds]

One thing no one mentioned is to do a really really slow infusion. The medical staff do not like that. You may have to push for it, but it makes a big difference. I can't remember the rate I think it was no faster than 125ml or 150ml per hour.. maybe even slower. Oh, and start slow (at 50ml) then increase the speed each hour until you reach the maximum speed. Start the saline IV 30 minutes prior to the IVIG (they hook them into the same line, so only one poke.) and continue it for 30 minutes after the IVIG is done.

Edited November 26, 2011 by formedbrds

[browneyesmom]

My dd 12 had her 7th IVIG Mon & Tues.... was the best she has ever done. Premedicated with 500 mg Acetaminophen and 25 mg Diphenhydramine. They started her rate at 25 mL/hour, increasing by 25 every 15 min until they got to 125, where she remained for the rest of the infusion. She was awake, playing a game online, reading or chatting the entire time. I made notes for next time.