Post-infusion severe headache

[sebrown1126]

Our son had IVIG Thursday and Friday of last week. After the second day of the infusion, he developed a very severe headache and vomiting that persisted for 12 hours. The headache remains. Nothing will touch it. He does not have neck pain, so we are choosing not to believe that it's aseptic meningitis.

 

Anyone else's child have a headache that long and severe? What helped? I'm working on getting some stronger pain meds, right now, we're using Motrin 400mg and have just added Tylenol (although it's not good for him....he's formerly on the autism spectrum). We also started prednisone today but no relief yet.

 

The great news is that we notice a difference in him with his PANDAS symptoms already! We just have to make some progress with the headache.

 

Feedback/guidance welcome. Thanks, Sara

[sebrown1126]

p.s. Sorry, JUST found another thread from awhile back on a similar topic. Got some tips re: benadryl and charcoal from that.

[mama2alex]

I'd also call your doctor, if you haven't already. A week is a long time for a child to have a severe headache. Our son got headaches after both IVIGs, but was helped by Tylenol and IV fluids on round one, and a little prednisone on round 2.

[kimballot]

Our son had IVIG Thursday and Friday of last week. After the second day of the infusion, he developed a very severe headache and vomiting that persisted for 12 hours. The headache remains. Nothing will touch it. He does not have neck pain, so we are choosing not to believe that it's aseptic meningitis.

 

Anyone else's child have a headache that long and severe? What helped? I'm working on getting some stronger pain meds, right now, we're using Motrin 400mg and have just added Tylenol (although it's not good for him....he's formerly on the autism spectrum). We also started prednisone today but no relief yet.

 

The great news is that we notice a difference in him with his PANDAS symptoms already! We just have to make some progress with the headache.

 

Feedback/guidance welcome. Thanks, Sara

 

I agree to call the doctor. Also benedryl and LOTS of water. I have my (adult - sized ) son drink about 6 water bottles a day from the day before IVIG until 2 days after. He's in the bathroom all the time, but so far no headaches!

[mom md]

We had one after one treatment when he went in slightly dehydrated. The neurologist said it was a migraine after he had it for 4 days and it did not go away. He took Amerge and it went away. He always does pre-treatment steroids (40 mg for 2 days pre, 40 mg for each day of transfusion, then 40 mg post x 2 days...then quick taper). Also, always go in VERY well-hydrated. He just had his 4th IVIG. No symptoms at all for 6 months. This is just to prevent a relapse.

[norcalmom]

YES - this happens to my son. The first time we did the steroids...two big does spaced a couple days apart as needed after the infusion. Migraine started several hours after the end of day two...vomiting started 3 day after that with return of migraine. Lasted for about 7-8 hours.

 

With recent IVIG, I didn't want to use the steroids. I had to the first night post ivig, his head was splitting, but of course he started vomitting within minutes. I think he got about a half dose, and it did take the edge off his headache, but the vomitting continued for several hours. I added some advil when vomitting quieted.

 

I spoke with doctor who said OK to give higher does of advil (prescription dose - he is 120lbs)..which I did for the next day every 5 hours or so...and I set my alarm to get up in middle of night to give him one or two advil as well for a 2-3 days. 6 days after IVIG - I let him sleep a long time with no advil, maybe he went 11 hours, because of the timing of last does before bed and because I thought he didn't need it anymore...and he woke with a migraine and the vomiting again. It was short lived (2 or 3 times) and after that I did one more middle of the night thing...

 

All told I'd say he had some form of headache for 8 days after IVIG.

 

OH - I had him take benedryl as well. I was not as religious about it as the advil, but I did think it helped for some reason. through in a few charcoal capsules after the vomitting as well.

 

 

With the advil, I think you have to get it in them before the pain gets bad (and then you can lower the dose of it) . and keep it up for a couple days longer than you think you need to - at least bedtime. I preferred the Advil to steroids. More work, but to me to give them something that shuts down their immune system right after you went to great lengths to bolster it, seems counterintuitive. I didn't know anything about steroids the first time, just that I should give it if DS got a headache that an advil couldn't handle.

 

I'm sorry you are going through this- its so hard to see them in pain and miserable from something you've told them will help them.

[sebrown1126]

We are now one-week post IVIG, and I totally put stock in the idea that some of our kids can have a huge herxheimer reaction post IVIG. We kept giving our son stronger pain meds and it didn't help. We changed to round-the-clock Benadryl, Alka-Seltzer, and Epsom Salt Baths, and the difference was amazing. He's still got a bit of a headache, but nothing like before.

 

Better yet, we are now seeing the positive benefits of IVIG. Last night, he told us that all the "bad voices" in his head were completely gone. Other people (as well as our family) are noticing a big difference in his emotional state, and his ability to be calm.

 

I LOVE IVIG!