My son is 13 and is on 25 mg of Predisone daily. We met with his doctor yesterday and want to start to whine him off. He is having really bad mood swings. Just not happy much. She decreased it to 20 mg now. Wants to see him in 2 months. The doctor told me that his weakness would go to were it shoud be at his age once he is off the Predisone. Can anyone that has gone through this tell me what to expect? I just really want a happy son back. Please any advice would really help.

Thanks, Lisa

Views: 94

Reply to This

Replies to This Discussion

I would try deflazacort before I would give up on steroids. My son is 13 years old, is still walking and has been on steroids since 4. He did 10 day on, 10 day off prednisone from 4 to 8.5 years old, and has been on daily deflazacort ever since. Your son may be getting depressed about having duchenne, particularly as he is now an adolescent. My understanding is that if you take him off steroids, he will decline quickly and putting him back on will not allow him to regain strength. Personally, I would do anything to avoid stopping steroids. While not walking is a terrible thing, the other problems associated with Duchenne, which I feel are even worse (loss of arm strength, breathing problems, inability to roll over in bed, scoliosis), are substantially delayed by steroids. Is your son still walking? What is his weight? My son weighs 102 lb and I give him 37.5 mg deflazacort daily.
Jeff Sobel said:
I would try deflazacort before I would give up on steroids. My son is 13 years old, is still walking and has been on steroids since 4. He did 10 day on, 10 day off prednisone from 4 to 8.5 years old, and has been on daily deflazacort ever since. Your son may be getting depressed about having duchenne, particularly as he is now an adolescent. My understanding is that if you take him off steroids, he will decline quickly and putting him back on will not allow him to regain strength. Personally, I would do anything to avoid stopping steroids. While not walking is a terrible thing, the other problems associated with Duchenne, which I feel are even worse (loss of arm strength, breathing problems, inability to roll over in bed, scoliosis), are substantially delayed by steroids. Is your son still walking? What is his weight? My son weighs 102 lb and I give him 37.5 mg deflazacort daily.


No, Last August he fell and broke his ankle and hasn't walk since. His weighs 84 lbs.
Hi
We decreased our son's prednisone to get a surgical wound to heal. We went to an endocrinologist to get advice about decreasing it and what to look for. She wasn't familiar with dmd and prednisone, but her advice was to get him down to 20 mg a day and then decrease 2mg/week until he was off it. She indicated that the adreanal glands will eventually start working again within a year. If your son has a major injury or needs surgery be sure to tell the docs that he has recently been taken off prednisone so they can administer a dose. The prednisone keeps him from going into schock I think. Anyway its important information to share in care of severe injury. As Erik was tappering off we checked temperature and blood pressure. It went pretty smoothly.

No guarentee that he will be happy boy. Ages 11-14 are tough.
Good luck to you.
Hi Lisa, Sorry for your troubles, I really feel for you. My son Francis also has Autistic Spectrum Disorder in addition to his DMD. I understand the frustration of behaviors can make. I'm not going to tell you what to do you and your family have to do what is right for yourselves. I'm just concerned with your son at age 13 being on 25 mg of Prednisone. Francis is 11 & we will be changing over to Deflazacort as soon as we receive it. I'm sure your doctor is wonderful, but have you heard of Dr. Brenda Wong at Cincinnati Children's Hospital, Cincinnati Ohio, she does only Duchenne/Becker. PPMD referred me to her. We just came back from there for our 1st visit. We have learned so much valuable information. I wish I had gone there sooner. If you need more information regarding Dr. Brenda Wong contact PPMD directly and they can answer your questions or find out answers. Unfortunately, not all clinics are created equal and what I have found is sometimes you have to travel outside your own city/back-yard to get the answers. Not trying to tell you what to do I just wanted to give you some information. I wish you the best of luck. Please feel free to speak with me anytime. Suzanne

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2022   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service