IVIG side effects

[browneyesmom]

My dd12 has had several HD IVIG infusions. She is immunodeficient on top of having PANDAS.

 

She was off them for a while (last one was early June) to see if her immune system would stabilize, but labs recently showed numbers lower than October 2010, when it was found - for IgA & IgG. Interestingly, her IgM is not dropping - not sure what the deal is there.

 

In any case, back to HD IVIG (Gammunex 2g/kg - she's had several times before), which she had Monday & Tuesday. She ran better than she ever has both days - did great! However, by last night (day 2 of infusion), had a severe headache (she's also prone to migraines) and nausea... called on call doc assuming it was side effect of the IVIG infusion and gave meds indicated for pain/migraine.

 

By 2 am, she was awake with fever around 100.5, vomiting and severe headache that is worse when she rises - rating 6-7 lying down, 8-9 on rising. I know there is a GI bug going around our area right now with these symptoms as every local doc office I am calling is telling me they are inundated with it (and having the immune deficiency, she tends to get everything going around); yet, they are also symptoms of IVIG.

 

She has never had side effects with IVIG before... wondering if that headache on rising is seen with kids who do have these side effects. TIA for input.

[JAG10]

My girl 12 has had headaches, low-grade fever and nausea (vomiting 1 time) as a result of IVIG. She has also felt worse upon standing when the fever was present, like she felt relief to duck-down. Her side effects have always been fleeting. With her first infusion, this happened immediately after day 2, then 3 weeks later, then 5 weeks later. Subsequent infusions have been much less problematic, so much so that she doesn't really need the prednisone as a pre-med.

 

My guess would be likely due to the IVIG. Hope she feels better soon.

[browneyesmom]

Thanks... still waiting for a call back... she got a little better for a while.

[thenmama]

I just asked my dd how it felt for her when she had her migraine after IVIG (she also was vomiting/nauseous). She said it was much much worse whenever she stood up or even moved. I'm sure her recollection is accurate because it was a debilitating migraine as it was-- she couldn't handle light, sound, it was painful just being still in bed, and she complained at that time that she couldn't move because it hurt too much and it was terribly painful when she had to get up to vomit.

 

Our regular doc had us give ibuprofen right when we called, which maybe helped a bit, and then the rheumy got the message, called us right back, and had us dose her with prednisone. We also gave her anti-nausea meds. Once she took the prednisone, things improved pretty quickly and dramatically. Don't remember if we gave her Benadryl after the fact-- know we gave it prior.

 

So sorry for your dd-- hope she feels better soon! We're thinking of you both...

 

TH

[browneyesmom]

Thanks T!! This is part of why I brought her to the ER - I didn't like that it was so much worse on rising. I'm exhausted and going to sleep, but the short version is they gave her a 72-hour steroid in the ER and within about 10 min, her headache (which had been improving a little along with fever reducing and nausea improving) dropped from about a 6-7 on 1-10 pain scale to a 3-4.

 

She was also likely exposed to the GI virus through my ex over the weekend, so it was a hard call this time, but really glad I took her in to ER tonight. We're all going to sleep!

[bigmighty]

Do some research into IVIG and hydration. DS had the "can't move or will grab head and fall down doubled over in pain" headache after the first IVIG. We started doing some research and found that hydrating helps a lot. The suggestion we read (and it worked for DS) is to start drinking 8 ounces of liquid every 90 minutes while you are awake - starting 48 to 72 hours before the IVIG and continuing for 48 hours after. No symptoms whatsoever after 2nd IVIG, using this method. NIH found the same info that we did and gave IV fluids after the 2nd IVIG. In our case, fluids helped significantly. If your child can keep the liquid down, drinking fluids really helps.

[browneyesmom]

Thanks bigmighty - this was her 7th HD IVIG and I completely agree with you. We start hydrating heavily 3 days prior and continue through 3 days after. I don't yet know what caused her symptoms this particular time, but it wasn't lack of hydration. We'll be establishing a protocol for future infusions.