Post surgery fever?

Hello, my son had his avm removed surgically and 10 days later developed a fever. The dr thinks it’s from coming off steroids. Anyone else experience this? He’s checked out his incision and keeps telling me everything is fine because he’s acting normal.

My son developed fevers a month and a half after his surgery/bleed surgery. Some doctors said it was storming, others said it was the automatic nervous system going crazy. After a couple months they went away.
He wasn’t on any steriods, and his AVM was in his cerebellum so his situation might not be similar.

What is storming? Did you treat with Tylenol? That’s what I’m doing but I feel weird giving it to him round the clock even though that’s what was advised

When we brought him home, the fevers started and I was giving him Mortrin as often as the instructions said I could. But after the third day, he was hospitalized again because it wasn’t going down. They said I should hold off medicating him until he was a certain temp (102.5), and tried other solutions like ice packs and keep the housing freezing cold lol. Also, they said to give him Tylenol instead and prescribed an every day super strength medicine like Tylenol, but I can’t think of the name of it.

Storming is like the nervous system going haywire after something going on with the brain. There is tons of literature on it. Symptoms range from sweating and fevers to high bp/heart rate and seizures. BUT my son’s situation during that time was pretty high alert so to say. But ask your doctor about the nervous system and maybe that could be it, also about the meds and how much and when.

Also, I bought tons of ice packs lol.

I read your profile btw. It’s amazing what your has son has overcome.

My daughter just had a cerebellum AVM rupture on Jan 5. She’s still in the ICU. She’s been running a fever for days off and on. Sometimes low grade but as high as 40.2. Doctors can’t decide if it’s storming or not. Tylenol and Advil are largely ineffective. They’ve done her cultures several times and she has been treated for pneumonia twice and a UTI. Still I feel like there might be neurological reasons for the fever. How long did this phase last for your son. How long did it take him to gain full consciousness?

I want to say for 3-4 months for the fevers to stop. His doctors wouldn’t say it was storming either. It wasn’t until 7 months later that he was storming for about a week (it’s definitely hard to watch). Look up autonomic nervous system dysfunction. ANS is the abbreviated term. That’s the term doctors used for my son. Or Dysautonomia. Explains the fevers. My son had the fevers, high blood pressure, high heart rate, excessive sweating. UTI problems as well.

For the fevers, we would have him with no clothes with ice packs and a fan on. I only used Tylenol sparingly because he would get used to. I tried Motrin first but they told me to stop using it.

FULL consciousness took about 5-6 months. It was real slow… he started to move a little the first couple months. Third month we realized he was awake but couldn’t open his eyes, so we did eyelid therapy so he could relearn how to use them (crazy right). The next two months he just wasn’t there at all. Like he was in a vegetative state. Our family thought he was going to be like that forever, but I gave him a letter board and every day I tried to get him to spell out something, and after two months he finally did.

So, yeah, it was very long wake up. It’s been two years and two months, and he has feeding tube out, talking, playing video games, working on his standing and walking (I think he’ll start standing this year). I see more of his old self everyday. But like the doctors say, it’s a long road with step forwards and step backs. My son actually had two bleeds (one on one day, the other the next) and the doctors were definitely not optimistic - now when they see him they’re amazed at how well he’s doing.

If you have any questions just hit me up. I’ll be thinking about you guys.