Our son had his AVM regrow – he had successful surgery to remove the second AVM two years after the emergency surgery that cleared the first, that had erupted. Surgeons used Dexamethasone on Madoc to relieve the swelling post surgery and sent him home to us without telling us that up to 17% of adolescents who receive Dexamethasone can have serious psychiatric reaction.
Our son had this reaction.
For five terrible days we had no idea what was causing the problem. We called and called the hospital and they all hid behind a wall of silence and denial.
I did research finally and discovered the side effect that 17% suffer.
Our child’s symptoms lasted two weeks until we sought a local psychiatrist and within ten hours of taking the prescribed medication he offered us, he was back to normal.
I have never complained about anything having to do with our care and treatment because saving the kid’s life was the most important feature – and our hospital did that beautifully. Heroes one and all.
The Dexamethosone side effect psychosis happened in four or five years ago and I’m only now mentioning it because others may be facing this.
Has anyone else encountered the adverse reaction?
And just to cap our story: Our son is well and in college – 4.0 last term! This all after he had to relearn all his nouns – so, huge victory. Miracles everywhere.
I was only on Dexamethasone for about 2-3 weeks after my emergency surgery when my AVM ruptured, and then again for a few days after my craniotomy when I was 16. I didn’t have any too horrible symptoms because I was not on it for very long, but I do remember being very irritable and occasionally getting suddenly angry. I was told this is normal.
I too was prescribed Dexamethasone on and off for a year and a half after side effects from my radiation surgery began to surface. I was a little older, starting at ~20 but I also experienced very heavy psychiatric effects, for me personally I could not comprehend or participate in conversations, constant emotional fatigue, confusion, black outs, even irritability and rage. It was quite the rollercoaster. However, the doctors saw the medication as necessary to my recovery and despite how bad the emotional stability got, I was instructed to remain on it until the radiation swelling got down to more stable levels. I too also experienced a level of psychosis, hallucinations, hearing voices that weren’t there that were screaming at me, the usual.
I failed a semester in university while I was on the medication, I was incapable of retaining information, let alone concentrating on the classes. When it came to sports my muscles and bones became so sensitive that I would take longer breaks between training sessions, I would start fights, many of them turning violent due to my inability to stop myself when I got going. It’s like my subconscious was gone, that voice at the back of your head that tells you right and wrong is gone, you no longer no feel like you’re happy or sad, what to do next. This was my experience though. I get quite jealous when I hear about other people who were prescribed the medication and having a relatively easier time.
But Dexamethasone is a tough drug for anyone, and that is my experience. I hope you gained some insight from my experience.
I had a ruptured AVM many years ago. I was given dexamethasone for a few days post-op, then weaned off while in the hospital. My doctors were very careful, since it is widely known that steroids have these kinds of possible side effects, and withdrawl symptoms if suddenly terminated.
I will be honest with you, my times with Dexamethasone was bittersweet. I also took them for a year on and off due to severe swelling and took my last steroid last year 14 June (remember the date because it was my last A level exam). I had terrible, terrible mood swings, this weird feeling in my mouth alongside increased appetite, a swollen face (which till this day is pretty much visible), extra blurs in my vision and then the w o r s t scarring on my legs with severe pain in my knees. The pain was as such where I would receive contraction-like pain for several times throughout my day like every hour or so where the pain so strikingly powerful I’d have to sit down and clasp on to my knee making the weirdest of expression.
But let me say, my migraines… ouf… they were close to painless where I would still be suffering daily attacks but the pain was like 0/1 out of 10! Now whether I would choose the head pain or knee pain… I would say anything over the head pain so you probably know why I call it ‘bittersweet’ times for me when I was on Dexamethasone.
Do not worry though… you are surely not alone in this community, there are other threads Dexamethasone related on the site which do share similar bad experiences.
My experience was no where near as bad as your son’s still I wish you and your son all the best. With time it will heal… hopefully
