I recently switched my son Danny (6) to Deflazacort. Due to extreme weight gain 25+ pounds in a few months. He started the Deflazacort two weeks ago. He went from 15mg of Prednisolone to 18mg of Deflazacort. He is now having extreme temper problems, to the point his school has called and stated that they are very concerned. It is like a very very long lasting temper tantrum, he is very naughty and mean almost withdrawn. This is not typical behavior of Danny at all. Is there a period of adjustment for this switch? I was under the impression it would get better with the switch. I was curious if anyone else has had this problem or has any advice for me? We have switched his neurologist and he doesn't see him until December. HELP please I don't know what to do.
One of the reasons we went with Deflazacort was to avoid the temper issues that is more common with prednisone. I am guessing it is the effects of switching from one to the other but I would check with your neuromuscular pediatrician.
Our son, Dacian has been on Deflazacord for 3 years now and we have seen very little behavioural changes because of it. To be honest, I think the ocassional tantrums are more related to his frustrations of realizing that he is very different then his peers, and not able to do many of the things that come natural to most kids. It is not easy for young boys to understand that they could never win a simple game of tag! Dealing with DMD is very difficult for the parents, but I am sure it is very challenging for the kids as well. Playtherapy seemed to help, he learned how to focus on the present moment and regulate his behavior. He has never taken Prednisone, and I am not sure if this might have anything to do with it. Hope this helps, good luck.
We have this issue with Joshua. He was never on prednisone and has been on deflazacort for 6 years. When he first started, his specialist told us to never go with Ritalin, Concerta, etc, because it can cause heart palpitations. but give him coffee. Ritalin's base ingredient is caffeine. We gave him chocolate covered espresso beans, iced cappuccinos and coffee. The reason why caffeine (not coke etc.) work is because it brings the cognitive up to the same level as the behavioral level in the brain. Try it to see his reaction. If it works like it did for Joshua, we sent a big bag of them to school and the teachers were able to give him a bean or two as needed because it isn't a medication. We were able to, as well as his teachers, see a difference within 2-3 minutes after giving it to him. If you are aware of his trigger effects before the behavior starts, is when it was given. For the past few years we have been giving him melatonin at night so he is getting his full sleep and it does assist to have a good day without the need for caffeine as often. Hope it helps!
I've been on deflazacort for 6 years now (since I was 15) and it has caused a lot of anger-management problems for me, I'm only on 15mg a day but in order to cope I have seen a psychiatrist who has helped me have less anger by psychotherapy as well as medicines. I barely got through high school because of my behavioral issues and got suspended from university for same before I was properly treated for my mental health issues caused by deflazacort and DMD. Also, you want to avoid caffeine at all costs because it has numerous negative effects on children and causes the heart rate to increase which is especially dangerous for DMD patients.
I agree that too much caffeine is not good for anyone, especially those with DMD. Though, I would rather give my child the small amounts of caffeine on an "as needed" basis, rather than being prescribed the Ritalin, Concerta etc., which has a much higher risk of causing heart palpitations and other side effects than coffee does.
My son is 7 and has been on Deflazacort for a year and a half. Prior to steroid usage he was diagnosed with ADHD and takes Focalin for it. It helped tremendously and has not had any negative side effects. The longer he took the steroid though the more behaviors we see. The focalin does not work as well, but makes somewhat of a difference. He is mostly very hyper and irritable, we give him Balean's Omega 3 Fish Oil(Fruit punch Flavor) for kids daily and after 2 weeks this helped greatly with temper tantrums and outbursts. We also met with the teacher and created a behavior plan for him to earn rewards when he does well. It's very challenging though, his behaviors are hard on my husband and I and his brother. He is so smart, but can't focus on school like he should and we and his teachers are exhausted. We have debated on stopping them because of the behaviors. I want him to have a good quality of life!! The thing is the steroids have helped with endurance and our doctor highly recommends for us to continue because of lung issues and scoliosis prevention in the future. We have also had other parents who have told us about coffee beans and they did work for their children as well. We tried this with Andrew and unfortunately we didn't have much luck. That is the hard part what works for one does not work for the other. Our motto is it never hurts to give anything a try, it may work it may not, but at least you know you have done everything you can. :)
I wanted to update: Danny snapped back approx. 1-1.5 months after the switch. He is now doing better than ever. His hunger is completely in check and attitude is gone. He is completely my Danny Bear again, even from before prednisolone. This switch was the best decision I have ever made, glad I stuck to my guns. It has been soooo-> worth it. :)
I too am glad to hear that he is doing better. When I started my son 1 and 1/2 years ago, he was a little over 3. We had some issues inititally too. But about 6 months later it got a lot better.
Thank you. I am so relieved, because it really was an awesome move in every other way (besides insurance not covering it) So I am relieved we stuck with it, as bad as it was for a while! :)