I need some opinions about stopping deflazacort.  I know each kid is different and of course most of us are not docs, but any advice would be appreciated.

My son is almost 7 and has been taked deflazacort for 3 years.  He taked a high dose 2xwk- to help to minimize his behaviors during the school week.  This means he is extra emotional and aggressive during the weekend.

We were originally told he has becker's, but this is not the case.  My sons walking is poor- he can only walk on flat surfaces, not the slightest incline or decline or he will fall.  He does not walk outside except on a driveway and he cannot walk more than 20 feet or step over anything.  he crawls in the house, but has a very very difficult time getting into any chair- he must pull up on furniture and he struggle so much.  he typically asks to be helped up off the floor.  he uses a stroller or his powerchair when out of the home.  he does walk around a little in his classroom and he has a rifton chair too.

18 months ago we did a trial off of the deflazacort and his energy level decreased and we out him back on this medication- however he was also more ambulatory at that time.

I feel like he only continues to decline- no improvement, like other stories I read about.  I am happy that his energy level seems increased, but it does not really improve his ambulation.  With the scary possible side effects (he had catarat extraction this summer, I was told they came on very suddently and did not look like medication enduced cataracts), only decline, and aggressive and emotional behaviors I am really thinking it is time to accept that this medication is just not a great option for our situation.

Any advice?  did anyone have a child with a similar story or a quick progression with ambulation?

thanks

Evelyn    

 

 

 

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Hi  My little guy will be 7 on Saturday.  He has been on Prednisone since 3.5 yrs of age.  We tried Deflazacort because we were told the "behaviors" were less severe with Deflazacort than with Prednisone.  We found after just a week or two on the Deflazacort his behavior was MUCH worse.  We stopped it and went back to Prednisone but it was month (if ever) that he went back to how he was before.  We are now considering with the help of our MDA doc trying to decide about stopping the Prednisone due to his weight and his emotional, agressive, impulsive behavior and inability to maintain attention.  He was very hyper prior to starting the Prednisone and it has always made the hyperactivity worse.  We are also dealing with alot of learning issues, not sure if that is DMD or med related.  I don't think this is very helpful to you, sorry.

Joni

 

Evelyn

My heart goes out to you.  It is such a difficult decision to make- it feels like you have so much to weigh.  Starting at age 5 we tried high dose deflazacort 2xwk for 3 years.  It was awful- we only had one good day a week and had to homeschool.  We also tried several ADHD meds during this time to see if they would help and noticed spikes in behavior regulation problems every time the deflazacort was increased for growth. We were at the point of discontinuing the medication because our family life was so unhappy and we wanted our sweet little boy to come back to us- even if it meant the progression would be quicker.  We finally stopped increasing his deflazacort in 2010 and went to alternate day dosing.  His behavior has improved dramatically, and we were able to discontinue all the ADHD meds.  We don't know if he is progressing faster now than when he was on high dose weekend or if his loss of strength would have happened anyway.  He is now 10.  He does use a power assist chair to get around school- but still climbs out periodically to walk around during recess and gym.  He walks at home and can still run a short distance.  He has difficulty getting off the floor but can pull himself up into a chair.

I guess in a nutshell you could try lowering and/ or changing the dose schedule of deflazacort or prednisone and see if it has any positive affects before you give it up all together.  I know if we did not experience such a positive change in behavior we would have discontinued deflazacort altogether and made our peace that we made the best choice for our family.

Feel free to contact me on my page if you need any more information.  I check this site daily.

Nana

I was just getting ready to start a discussion when I came across this, I could just change the name and it is to the T describing our son Andrew. We have been debating stopping deflazacort altogether and really just need some help and support. I read all the positve effects, like walking longer, longer lung function, prevention of scoliosis, etc. and get discouraged that if I stop it would be the wrong choice. But his behaviors are so unbearable at times. So hyper and irritable and the longer he takes the steroids the worse he gets. He is 7 and has been on them for a year and a half. Prior to this he started medication for ADHD, which has helped and did until we started steroids, now it doesn't seem to make a difference at all. Our family life is suffering so much and he is so smart, but can't focus enough at school to make progress, or progress is minimal. His teacher is amazing and works well with him and us and has a behavior plan in class, but he is beginning to do more behaviors that are agressive now. He is not sleeping well, even though we give him melatonin. The other day for no reason at all. He squeezed chocolate syrup through the house and all over the couch, doused it with parmesan cheese in a matter of seconds, I can't even go to the bathroom without wondering what is going to happen. We are so stressed and I worry about his quality of life. Please help!! I would love suggestions, encouragement. We give him Omega 3 fish oil which does help with outbursts. He just does not stop he is constantly keyed up. Thanks! Jodi

As to the behaviour changes. What you all need to understand is that both Prednisone and Deflazacort will amplify emotional responses. My son Kyle who is now a happy, healthy and active 19 year old out on his first year of college, has been taking Deflazacort non stop with the dosage prescribed by Dr. Doug Biggar, that never in my wildest dreams would I think to alter, for 13 years. His emotions growing up were volatile. Never ever uncontrollable. We just understood that the steroid would make him more sensitive and did our best to keep him happy and engaged. If you are having behaviour issues, do not blame the drug. Understand that your little guy is your "little guy on steroids" quite literally. Change your behaviour or what you are doing to affect a change in his behaviour but for the love of everything holy, do not take him off Deflazacort. 

[PPMD admin note: This post has been edited to remain on topic and/or adhere to our Terms of Service]

 

Thanks Fred

Your post comes at an interesting time.  as you can see I posted this a year ago- my son is still taking the deflazacort, but we have an appointment coming up next week and will again have the talk about staying on deflazacort.

We would not ever change back to prednisone.  I like the idea of not blaming the drug and thinking of it as my little guy on steroids.  We have changed our behavior and it works most of the time and when it does not- that is okay too.

Your post is honest and real, very very helpful.  Thanks to Kyle too-   my son is only 7 and I always wonder what he will think of our choices and decisions when he gets older.  I really respect your perspectives.

Evelyn

I found with Kyle that he was always an emotional wreck. All he needed was a disapproving look to start bawling and this was even before the Deflazacort. I have no idea where you are but Doug Biggar is one of the leading experts in Canada on Muscular Dystrophy and Deflazacort specifically. I do not know what his time is like now that he is "retired" but I do know that he keeps his hand in the goings on of his patients.The Holland-Bloorview Kids Rehab is an awesome place in Toronto for assistance and information. As for me, Muscular Dystrophy became my new hobby 13 years ago when Kyle was diagnosed. So feel free to contact me should you have any questions.

The other thing that you should investigate is the specific type of mutation that your little guy has. If it is what is called a "nonsense" mutation there may be hope in a drug called PTC-124 (http://www.selleckchem.com/products/PTC124.html?gclid=CLH8m5_Nh7oCF...). It only works on a small percentage of Muscular Dystrophy patients and Kyle is not among this group unfortunately.

I have tried to give Kyle every single experience I can. Right now I am his support person at college because this is the only way we can make it work. He sleeps in the Cadillac of beds and wants for nothing. He is also the kind of kid that would give you the shirt of his back if he felt you needed it more than he did.

The good news that I can give you is that the emotional roller coaster will taper off as he gets older. However, at 19, Kyle still has to experience puberty. It's coming, but really slowly.

Oh and FYI, Kyle is on 39mg of Deflazacort (6.5 pills) in the morning, 365 days a year.

Fred,

Kyle takes his whole dose of 39mg in the morning? Did you ever try splitting it in 2 or 3 doses throughtout the day instead, and if so, what differences did you see if any?

My 7-yr-old was prescribed hid deflaz as morning, noon and evening, but I never trusted the school to give the noon dose, so we have always done breakfast and supper time. He's now 13, and some of the meltdowns have caused me to question whether he would have been more emotionally stable had we stuck to the 3x's a day regimen. We notice that if he is late in taking his suppertime dose, he's cranky, and so when we notice he's cranky, we check to make sure he has taken his last dose.

Just wondering about your/Kyle's experience. Thanks.

Andrea (Montreal)

Kyle has been taking his dose first thing in the morning since he was 6. We never split it during the day at all. We asked about this at first but was told there would be no benefit to spreading out the dose over 24 hours.

Dr. Biggar was willing to call me last spring to discuss some questions I had, and my son was never even a patient of his, have never met in person. So yes he is still active and very supportive.

When I read that Kyle takes all his deflaz at once, I was actually shocked (and it is hard to shock me) because it has always been so noticeable when Simon is close to "needing" his evening dose, he get irritable, emotional, sluggish. Takes his pills and within 10 minutes he's fine, back to happy boy. I don't think he would be able to cope with a once daily dose, but of course we can never know what the choice we didn't make would have given, can we?

For puberty, we have begun talking about testosterone shots. Do you have a parent's perspective on that?

Thanks for sharing,

A.

I would recommend you try a few days giving his dose all in one shot in the morning, see how that goes. As for testosterone, we talked about it with Doug and came to the conclusion that there is no point in hurrying it up, it will come when it comes.

Thank you all for sharing...my son Lucas is 13 almost 14, in puberty, and VERY difficult to deal with. This past evening he told me he felt "out of control" and needed help. I have wondered how much the deflaz played into this, and after reading what you all have said, I'm guessing a lot. This idea of separating the dosing is new to me. Lucas takes 30 mg daily in the morning. He sees Dr Wong in Cinci and she never mentioned splitting the doses. Our family life has become very stressful and would love any info, details, ect as to how you have all handled these meltdowns!!! Thanks Karen 

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