dealing with aggression and rage from the prednisone

My 4 year old son has been on high dose prednisone since Feb 09. He relapses very quickly when we have attempted weaning. He currently is on a trial of Cytoxan (started 5 days ago) + is continuing prednisone at 10 ml/day (which is around 32 mg/day) for 4 weeks despite his current remission; the doctor wants to maintain remission for the cytoxan trial.

My issue is with some terrible, frightening behavioral outbursts. He has not had anything to this degree until about 1 week ago when he began to blow up at every little thing and had noticable difficulty getting settled down afterward. These have progressed into meltdowns multiple times a day that include kicking, hitting and biting. I have resorted to putting him in his room and holding the doorknob until he calms down but now he is also breaking things and being destructive while in these rages. It takes at least 30 minutes for him to calm down and he may later have another episode just like it later in the day.

He has always been a bit moody but never like this. In the past (including for the last 6 months on prednisone) he has always managed to control his behavior and has had no problems in preschool or in public, and rarely even with me at home.

Is there anything that can be done to mitigate the behavioral side effects of prednisone? We can not go to every other day dosing because he relapses so fast; we are trying a slow monthly reduction in his dose. I am not sure I can keep going with this for much longer; he's almost psycotic in his raging. Last night he even woke up in the middle of the night screaming and having a fit. I have called the doctor and am waiting to hear back but would appreciate some advice from anyone who's been there in the meantime.

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Hi Jill-Lynn, i can relate exactly to what u are saying about the terrible mood swings caused by the steriods.
My 5 year old Adam, has fsgs and is steriod dependant,he is currently on 20mg until he is in remission again, if he isnt clear in 2 days we have to go back to the 45mg and i know all hell is going to break loose then.he is very hard work now but its going to get worse the higher the dose..

Adam was such a placid child, never any trouble at all until he was put on the steriods in 08..i could never have imagine my little boy could change so much..he has become angry, aggressive, demanding and in general a very big handful..plus the fact he doesnt sleep when on steriods which me i rarely get a break from the constant demands

At times i have to take a step back and think this is the medication talking and its not adam being bold,but its so hard..he too kicks, screams, bites etc., he was off the steriods once for 2 weeks and i did see my little boy coming back..

i think alot of the anger etc has to do with the lack of control and the invasion in their lives, they have to put up with so much prodding and poking,it would eventually annoy anyone, but its harder when u are only 5 years!!

i found the best way to deal with these violent outbursts is to try and distract adam, reprimanding him doesnt work at all..when he is about to have a "wobbly" i change the subject or talk to someone else, of course it more than often doesnt work but sometimes it does:)

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jill-lynn, prednisone definately affects moods and personally. As an adult, I was able to control my temper and my tongue most of the time when on high doses but sometimes it was really hard to do. It seemed that whatever popped into my head tended to pop out of my mouth. I'm sure it is really bad for children who have not had time to develope the self control needed to deal with prednisone. There were times I felt like I would jump out of my skin. Sometimes I would get the shakes and it was hard to write or do things that required good motor skills. My heart goes out to the little ones who have to deal with all of the weird and strange feelings and are too young to understand what is causing them. My heart also goes out the the very special and wonderful parents of these children. May God bless and give you the wisdom and strength to deal. My husband knew I did not mean to snap at him and he would tease me about the pred showing. I would not have made it without his help and understanding.

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Hi Jill-Lynn,

I would categorize prednisone as the drug from hell. It always amazes me how different people react so differently when on it. Some love it, some hate it.

Let me tell you how I felt so that it may give you an understanding of what your son may be going through.

I felt as if I was in perpetual motion. Even when sitting absolutely still my body was internally vibrating. I was like the energizer bunny, every thing had to be done at top speed and done now. God help my poor husband. I had a very short fuse. My temper was always just ready to erupt. I was an adult so I had many more built-in controls than a child. There were times when my hands would tremble and I could not stop them. My emotions were very close to the surface and I used to go into the shower and cry myself silly. These were awful months. I think prednisone is one of the most evil drugs out there but they are a necessary part of the treatment for inflammation.

I think activity and lots of distraction would be good for your little guy. He must be so confused and hurting with no way of expressing just how bad he feels. My heart goes out to him and to you. I know just how frustrated you must be but keep in mind this is beyond your little one's control; this is the prednisone speaking.

Take care.

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Thanks for sharing that MacLean and Boussaar, that really does help to hear how prednisone has affected both of you.
Jill-Lynn, it is so incredibly hard, sad and frustrating. I know exactly how you feel. Like MacLean said, I think lots of exercise is the key. We keep our little girl pretty busy because it seems to help by both distracting her and tiring her out. I also say yes a lot because I quickly realized that she couldn't handle any answers she didn't want to hear. Saying yes immediately diffuses the situation until she is a little calmer and then we can revisit whatever her crazy request was. The only other thing I would check with your neph about is steroid toxicity. My daughter's behavior was the most unmanageable when she became steroid toxic. The good /bad news was that because of the toxicity we had to move onto a second line med. Although it was hard to make that move, we were relieved to start tapering the steroids.
Please know that I am hear for you if you want to vent or talk more. Hang in there.
Laura

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I have to say, I am just so thankful today was a better day, a much better day; and I now know to just be thankful for an ordinary normal day! The thing about saying yes at first when possible is a good idea. Matt definately got the most out of control when I strongly told him no or I made a point to say he just can't always get his way. I guess the problem is, I have to relearn how to discipline. My older son needed me to be clear with his limits and to have me be very straightforward and firm. That helped him understand he could not control and manipulate every situation.

With Matt, I was thinking I needed to do the same so I would not get him so used to getting whatever he wanted (and, sometimes he was very aggressive and his demands were so unreasonable so I didn't want to reward that- so I got extra firm.) Well, I am learning there is an art of tolerance and finesse with this whole thing and really I could watch my easygoing husband with Matt get along SO much better and have MUCH less behavior issues. For all our sake I am learning to be more permissive and let some things go that I wouldn't have if he hadn't been dealing with all this from prednisone!

One question I do have- how do I know if he is steroid toxic? My MD kind of rejected that but I don't know how you really know.

Thanks, Jill

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Glad today was better Jill:) it is amazing how your perspective changes post diagnosis!

My daughter's bloodwork and urine told us she had steroid toxicity. Her sugar levels were really high which meant that she wasn't processing sugars correctly. She also had a cushingoid appearance (more swollen than the moon face). She had high blood pressure and no growth for a few months. And her behavior was beyond unmanageable.

I hope your son isn't at this point.

And I hope you have another better day tomorrow:)

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Hi I'm coming late to the discussion but as an adult on high doses of pred. I too had a really bad psychological reaction. Like Maclean mentioned above, everything is very important and has to be done NOW and QUICKLY. This fervour is not seen by anyone else so I got very impatient with others for not seeing what I KNEW to be the case. Your moods are really volatile so you cry and get upset at the drop of a hat. One thing that tipped me off that my behaviour was skewed was that despite being a world traveller in the past, I became lacking in confidence about driving somewhere unknown and started becoming semi-reclusive. I think I was pretty difficult to deal with at times. However, once I complained about it to my neph he sent me to a pharmopsychologist who listened to me for about 30 seconds, knew exactly that the prednisone was causing it all, and put me on another drug which counter acted against all that. Within 3 days I was back to my normal "charming" self. It felt amazing. As we tapered the pred. we tapered the other drug too. I don't know if it's suitable to give children these kind of drugs because of possible side-effects but it couldn't hurt to find out. Prednisone is the worst drug I have ever taken and I do everything to avoid it these days. Best of luck with your little guy - hope he can come off it soon.

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Hi Jill, My heart goes out to you and your little boy. I can certainly relate. My daughter, Ali was diagnosed with MCNS at age 2. Unfortunately we have been fighting this battle for 16 years. Her mood swings were horrible and she too had bad rages. Around age 8 she became psychotic due to the steroids. She took a kitchen knife and came after her older sister. At that point her nephrologist said she had steroid induced psychosis and we had to taper her prednisone quickly and started her on the cytoxin. The cytoxin held her for 18 months and then she relapsed but at least it gave her a break from the steroids. Hopefully the cytoxin will work for your son and he will be off the steroids soon. The funny thing about my daughter's behavior on steroids was that she never had the rages or outbursts in school. They were always at home and mostly with me. I am her #1 caregiver and the one who took her to hospital, doctors, gave the meds etc. so all her anger was displaced on me. I am her punching bag. It gets hard at times but I know she loves me and has to let it out with someone. We saw a spychologist who gave us some helpful hints. If you go the psychologist route try to find one that is familiar with dealing with children with chronic illnesses. We only did a couple of sessions and even though everything we heard was common sense it gave me a feeling of control. So try not to sweat the small stuff with your son. Pick your battles. Try to let him be in control of somethings by giving him choices, keep him as active as possible, but never let him get away with aggressive behavior like hitting you or throwing things that might injure somebody. Those limits have to be very clear to him. It is all a balancing act and there are no easy answers. Another great tool--Prayer. I have certainly done a lot of that through the years and it has gotten me through some tough times. I will keep your son in my prayers. Didi

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Thank you to all of those who posted. This has been a difficult time and the support of others who actually understand makes it feel a little less like my fault- it is so easy to blame yourself when your children's behavior is out of control!

I have tried to make a point of being much less confrontational and trying distraction as much as possible and it seems like that does keep the fuel off the fire and things tone down quicker. I do need to work on not being Matt's punching bag, like Didi mentioned, her story is just like mine, Matt is much better with his dad or with other authority figures. But, for his brother and me, he lashes out physically at the drop of a hat. I will try to keep reinforcing, like you mentioned, that he is not allowed to hurt anyone- no matter how angry he is.

Thanks again and I too am praying and appreciate your prayers as well.

Jill

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WE HAD A MAJOR BEHAVIORAL PROBLEM!. WE TOOK OUR CHILD TO A BEHAVIORAL THERAPIST, HE IS 5 YEARS OLD. AFTER WEEKS OF THERAPY AND NOT MUCH CHANGE FINALLY AN ON CALL THERAPIST TOLD US ABOUT RED #40. ITS IN EVERYTHING! SHE TOLD US TO GO THRU EVERYTHING HE EATS AND TAKE IT OUT OF HIS DIET. I'M GOING TO MAKE THIS AS SHORT AS POSSIBLE... WE DID AND WE NOTICED AN 80% IMPROVEMENT IN HIS BEHAVIOR! WE CAN TELL ALMOST IMMEDIATELY IF HE'S HAD SOMETHING WITH RED #40 IN IT, FROM GUM BALLS TO CEREAL. HE CAN STILL BE DIFFICULT AT TIMES BUT HE'S MANAGABLE NOW. HE BROKE THINGS THREATENED TO KILL US, EVEN GET PHYSICAL WITH US. THATS ALL STOPPED NOW. IF YOU READ UP ON IT YOU WILL SEE THAT RED#40 CAN CAUSE ANY CHILD TO ACK OUT THIS WAY BUT MIX IT UP WITH PREDS AND ITS A SITUATION OUT OF CONTROL. AND THATS WHATS SAID ABOUT IT, THEY CANT CONTROL IT! TO LEARN MORE ABOUT IT AND THE AFFECTS IT HAS ON OUR CHILDREN GO TO, www.journeytocrunchville.com THE TWO TOGETHER IS A TERRIBLE COMBINATION. IT WORKED FOR US! I WAS ON XANAX EVERY DAY IT WAS SOOO BAD. I THOUGHT HE WOULD GO CRAZY IF THINGS DIDNT CHANGE. IT TOOK SOME WORK AND GETTING USED TO BUT ITS WELL WORTH IT. GOOD LUCK. I HOPE YOU TRY THIS AND HAVE THE SUCCESS WEVE HAD.

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JUST WANTED TO ADD ONE MORE THING. I ALMOST CRIED WHEN I READ YOUR PLEA FOR HELP, I WAS ONCE JUST LIKE YOU, DESPERATE. OUR CHILD TOO HAD NO PROBLEMS IN SCHOOL OR OTHER AUTHORITY FIGURES JUST US, HIS CAREGIVERS, THE PEOPLE WHO LOVE HIM THE MOST. HE STOPPED LETTING US HUG HIM , KISS HIM AND NO AFFECTION FROM HIM. THATS CHANGED NOW TOO. HANG IN THERE, HE REALLY DOES APPRECIATTE AND LOVE YOU. ALSO THINK ABOUT A WII GAME FOR THE WINTER MONTHS WHEN HE CANT GO OUTSIDE TO PLAY, IT HELPS WITH ALL THE EXTRA ENERGY THE PREDS GIVE THEM.

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What was the dose during weaning did your son relapse
on? (pred)After initial dx

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there have been a lot of relapses- I am trying to remember! I think it was at 8 ml every other day. we'd done 12 every other day, then 10 every other day... I think by the first day on 8 he relapsed and he had no cold or other trigger that I know of. Unfortunately, he just has a difficult time weaning off.

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