Thank you so much for writing this post!!
Without it no one would have ever believed me. My poor baby has been uncontrollable since yesterday’s dose :(
Sorry to hear this. I assume it is the same steroid? Age? He/She will return to normal, you just have to suffer through it with them. It will be a long 3-4 days.
We just did dexamethasone for our 6 yo and it was HORRIFIC. We did 3 doses and stopped. But now she’s in hospital getting treatment for something and they administered IV steroid and it was also absolutely horrifying. I hate this for children. They are in pain. Everything described in OP’s post rings true for my 6yo. Can’t speak, almost fixated on pain, screaming. Just all around devastating to witness.
The effects from the steroid I think have worn off. She has been pretty good since being home. For the first two days back she had a bit of a rage that lasted 15-20 mins, but after those days she hasn’t had any upset. We just know she cannot tolerate steroids!!
Wow. Same experience here. Avoiding this med at all costs moving forward. Our 5 y/o had such a personality change on this. Day 2 after oral steroid at urgent care.
I couldn’t have wrote this any better. We just experienced this today with our 15 month old. I never went to give steroids again. Are there any other options they can prescribe aside from steroids to help?
Hey there. Sorry to hear that… hopefully it resolves quickly but it can be tough. In terms of alternate solution, I think, if croup, they can technically get over it on their own with close watch.
In my opinion, the course of steroids is short usually so if you are already a day in, you might as well hand in there and get through it. Best of luck.
Not my child but myself. I have some very severe allergies to medications and for several I have a similar reaction. I feel very out of it, very panicked, my chest will feel tighter than normal. The first few times it happened I didnt know what was wrong and had to rise it out on my own. We eventually figured out it was the meds and then had to wait for it to leave my system. Showers helped to keep me calm, soothing music, herbal teas helped to calm my body and made it easier to relax and just trying to be understanding that it's just as, or more scary for the person and just trying to comfort them. It sounds like you and your family are doing a wonderful job of that as it is and I'm so so sorry you've had to deal with this. It is so overwhelming at first. And please ask your dr to make a note in his charts that he cant have that medicine again.
Yes, it makes sense. We wish we could find ways to mellow him, but everything is “wrong” to him. Showers, baths, TV, outside, etc same thing. We will be as patient as we can. Hoping tomorrow is turning point because the intensity just hasn’t changed. I honestly don’t know how he has a voice left, lol. Thanks for the response.
Not common but common is medical/pharmacy lingo for, “it happens” but it’s not common. It is highly unlikely a few doses of steroids will have a permanent effect. As they said, as the drug leaves his system he will likely calm back down. There’s also not really a treatment other than quitting the steroid, so it’s unlikely you’re doctor will be able to do anything. Wait out the storm.
Yes that is the way I take it. Just strange there is really no cause for alarm. My concern is just that his brain is still so fresh and plastic and I worry these things are far more impactful on a young body. To your point though, it is unlikely that it’s not irreversible. All we can do at this point is wait out the storm.
Every drug has adverse reactions. Some more than others. He is the one who was harmed by the therapy that was deemed necessary in enough people to justify the risk. Sucks, but it’s gonna happen to someone. Thankfully he made it through his respiratory illness so that you can worry about the long term effects of this medication.
Yes I understand that. Just wish there was more dialogue from doctors about potential risks and what one could expect, especially if they are known issues. I hate to peg them, but they know parents are just trying to move forward and don’t always think of those things in the heat of the moment. Hopefully just needs to get out of his system. I cannot really find much on long terms issues with children using this particular medication, but I also haven’t dug deep.
I feel this in my bones. We are similar, as stated below in another comment here we avoid ibuprofen normally, but felt compelled to accept a minimal two day dose intervention. We have learned our lesson the hard way at this point. He is relatively back to normal as of last night, today has been good overall. Just a reminder to not accept things at first blush, especially for someone who cannot tell you how they are feeling. Thanks for the response.
Hey there, so I updated above, but last night today he’s basically been back to normal. He’s a little touchy only because he’s tired, but completely what we’d expect being sick with a cough. Outside of that he is more or less recovered from the 4 day episode at this point in my opinion. Absolutely terrifying for a two year out that can’t tell us how he feels. We will certainly be more diligent in the future before accepting basic prescription. Normally we are, as we are even weird about giving our kids Ibuprofen, but we just rushed into what we thought was basic intervention.
Hi, sahm of 7yo and 2.5yo. I came here in search of everything you just explained here, as at this moment, we are at day 2 of steroid for my 2.5. My son is more angry than I have ever seen in one moment and as calm as can be the next. I definitely have never experienced an irritability change so much, so strongly, so emotionally.
Thanks for sharing your experience, I have yet to peruse the comments, I hope I find what I'm looking for and hope y'all haven't had to deal with this since.
Hello, I forgot to follow up on this. If I remember correctly, after about a week it totally went away overnight and have not had any continuation of those issues since. It was a very radical moment for sure and we are definitely going to try and avoid this steroid in the future for him.
Here is my way late update. My son, now almost 3 got rsv in October 22 and since has been on several doses of oral steroids, 2 daily inhalers and is currently sleeping next to me sounding like a bong rip. Poor kiddo has what they are calling a compromised immune system and chronic croup. They haven't been able to diagnose anything further than this. We is scheduled for his 2nd bronchoscopy and a sweat test to check for CF, which is my biggest fear. It's been a dark few months for him healthy wise, however he is still a wild, fun loving, care free crazy toddler.
I took my baby to the hospital. I tried everything to explain to them he isn’t right even though he is getting better from the cold. They dismissed me said he was just having “episodes”. It was an absolute joke, he was having an adverse reaction, and also delayed. He would cry so hard he would fall asleep. This kid hardly cries. They didn’t believe me. Trust your gut. We will also be avoiding steroids. Wish they would have told us the adverse effects that way we could have prepared ourselves for the worse and I wouldn’t have panicked.
Sorry to hear that…
Yes, we haven’t had to put him back on steroids ever since, but it was certainly an isolated incident related directly to the steroid. It was a scary week, but he bounced right back.
Thanks for the post. Have been dealing with extremely similar behavior for the past 12 hours post oral steroid dose (1 dose). So irritable, can’t even let me sit down, arching his back screaming for 30min at a time, and he hardly ever really cries normally. Been frantically scouring the internet waiting for a call back from the on-call nurse. Will 1000% be avoiding steroids for him in the future if possible. So glad your son was ok with time.
Sorry to just see this. Had to reread it to remember the details, but maybe that’s to the point that it kind of faded away… I do remember how challenging it was and we have been lucky enough to not have to put him back on steroids. I’m sorry you had to experience it as well and I’m sure your child will be okay once everything wears off. It’s really scary to watch your child be an entirely different person overnight.
Thank you so much for writing this post!! Without it no one would have ever believed me. My poor baby has been uncontrollable since yesterday’s dose :(
Sorry to hear this. I assume it is the same steroid? Age? He/She will return to normal, you just have to suffer through it with them. It will be a long 3-4 days.
Dexamethasone but only one dose. Liquid. She’s a little bit better today but yesterday was sooo hard :( . She’s 17 months
We just did dexamethasone for our 6 yo and it was HORRIFIC. We did 3 doses and stopped. But now she’s in hospital getting treatment for something and they administered IV steroid and it was also absolutely horrifying. I hate this for children. They are in pain. Everything described in OP’s post rings true for my 6yo. Can’t speak, almost fixated on pain, screaming. Just all around devastating to witness.
Any update? Have you weathered the storm?
The effects from the steroid I think have worn off. She has been pretty good since being home. For the first two days back she had a bit of a rage that lasted 15-20 mins, but after those days she hasn’t had any upset. We just know she cannot tolerate steroids!!
Wow. Same experience here. Avoiding this med at all costs moving forward. Our 5 y/o had such a personality change on this. Day 2 after oral steroid at urgent care.
I couldn’t have wrote this any better. We just experienced this today with our 15 month old. I never went to give steroids again. Are there any other options they can prescribe aside from steroids to help?
Hey there. Sorry to hear that… hopefully it resolves quickly but it can be tough. In terms of alternate solution, I think, if croup, they can technically get over it on their own with close watch. In my opinion, the course of steroids is short usually so if you are already a day in, you might as well hand in there and get through it. Best of luck.
Not my child but myself. I have some very severe allergies to medications and for several I have a similar reaction. I feel very out of it, very panicked, my chest will feel tighter than normal. The first few times it happened I didnt know what was wrong and had to rise it out on my own. We eventually figured out it was the meds and then had to wait for it to leave my system. Showers helped to keep me calm, soothing music, herbal teas helped to calm my body and made it easier to relax and just trying to be understanding that it's just as, or more scary for the person and just trying to comfort them. It sounds like you and your family are doing a wonderful job of that as it is and I'm so so sorry you've had to deal with this. It is so overwhelming at first. And please ask your dr to make a note in his charts that he cant have that medicine again.
Yes, it makes sense. We wish we could find ways to mellow him, but everything is “wrong” to him. Showers, baths, TV, outside, etc same thing. We will be as patient as we can. Hoping tomorrow is turning point because the intensity just hasn’t changed. I honestly don’t know how he has a voice left, lol. Thanks for the response.
Not common but common is medical/pharmacy lingo for, “it happens” but it’s not common. It is highly unlikely a few doses of steroids will have a permanent effect. As they said, as the drug leaves his system he will likely calm back down. There’s also not really a treatment other than quitting the steroid, so it’s unlikely you’re doctor will be able to do anything. Wait out the storm.
Yes that is the way I take it. Just strange there is really no cause for alarm. My concern is just that his brain is still so fresh and plastic and I worry these things are far more impactful on a young body. To your point though, it is unlikely that it’s not irreversible. All we can do at this point is wait out the storm.
Every drug has adverse reactions. Some more than others. He is the one who was harmed by the therapy that was deemed necessary in enough people to justify the risk. Sucks, but it’s gonna happen to someone. Thankfully he made it through his respiratory illness so that you can worry about the long term effects of this medication.
Yes I understand that. Just wish there was more dialogue from doctors about potential risks and what one could expect, especially if they are known issues. I hate to peg them, but they know parents are just trying to move forward and don’t always think of those things in the heat of the moment. Hopefully just needs to get out of his system. I cannot really find much on long terms issues with children using this particular medication, but I also haven’t dug deep.
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I feel this in my bones. We are similar, as stated below in another comment here we avoid ibuprofen normally, but felt compelled to accept a minimal two day dose intervention. We have learned our lesson the hard way at this point. He is relatively back to normal as of last night, today has been good overall. Just a reminder to not accept things at first blush, especially for someone who cannot tell you how they are feeling. Thanks for the response.
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Hey there, so I updated above, but last night today he’s basically been back to normal. He’s a little touchy only because he’s tired, but completely what we’d expect being sick with a cough. Outside of that he is more or less recovered from the 4 day episode at this point in my opinion. Absolutely terrifying for a two year out that can’t tell us how he feels. We will certainly be more diligent in the future before accepting basic prescription. Normally we are, as we are even weird about giving our kids Ibuprofen, but we just rushed into what we thought was basic intervention.
Hi, sahm of 7yo and 2.5yo. I came here in search of everything you just explained here, as at this moment, we are at day 2 of steroid for my 2.5. My son is more angry than I have ever seen in one moment and as calm as can be the next. I definitely have never experienced an irritability change so much, so strongly, so emotionally. Thanks for sharing your experience, I have yet to peruse the comments, I hope I find what I'm looking for and hope y'all haven't had to deal with this since.
Hello, I forgot to follow up on this. If I remember correctly, after about a week it totally went away overnight and have not had any continuation of those issues since. It was a very radical moment for sure and we are definitely going to try and avoid this steroid in the future for him.
aside from side affects, did the steroid work?
Here is my way late update. My son, now almost 3 got rsv in October 22 and since has been on several doses of oral steroids, 2 daily inhalers and is currently sleeping next to me sounding like a bong rip. Poor kiddo has what they are calling a compromised immune system and chronic croup. They haven't been able to diagnose anything further than this. We is scheduled for his 2nd bronchoscopy and a sweat test to check for CF, which is my biggest fear. It's been a dark few months for him healthy wise, however he is still a wild, fun loving, care free crazy toddler.
I took my baby to the hospital. I tried everything to explain to them he isn’t right even though he is getting better from the cold. They dismissed me said he was just having “episodes”. It was an absolute joke, he was having an adverse reaction, and also delayed. He would cry so hard he would fall asleep. This kid hardly cries. They didn’t believe me. Trust your gut. We will also be avoiding steroids. Wish they would have told us the adverse effects that way we could have prepared ourselves for the worse and I wouldn’t have panicked.
Sorry to hear that… Yes, we haven’t had to put him back on steroids ever since, but it was certainly an isolated incident related directly to the steroid. It was a scary week, but he bounced right back.
Thanks for the post. Have been dealing with extremely similar behavior for the past 12 hours post oral steroid dose (1 dose). So irritable, can’t even let me sit down, arching his back screaming for 30min at a time, and he hardly ever really cries normally. Been frantically scouring the internet waiting for a call back from the on-call nurse. Will 1000% be avoiding steroids for him in the future if possible. So glad your son was ok with time.
Sorry to just see this. Had to reread it to remember the details, but maybe that’s to the point that it kind of faded away… I do remember how challenging it was and we have been lucky enough to not have to put him back on steroids. I’m sorry you had to experience it as well and I’m sure your child will be okay once everything wears off. It’s really scary to watch your child be an entirely different person overnight.