My 7 year old, Riley has now been on 15m of Deflazacort for 1 year and 1 month. He has just recently started having reactions to the steroid. He is naturally an extremely mild mannered child, but for the past two months he has been very aggressive, angry, crys a lot, is easily frustrated, and has an eratic slezeping pattern. And it is getting severe!! It is evident that he is frustrated with himself and cannot understand why he is behaving this way. I reviewed past post under this disscusion topic and saw that a few parents suggested Pure cod Liver Oil, and intake of fluids, and mood stabilizing drugs (not specified). I am wondering what the mood stabilizing drugs are and if there are any other suggestions. We do not go back to Cincy until October, I am about to call Dr. Wong for help but thought I'd come here first to see what other parents have been told to do. I cannot imagine letting Riley live feeling like this every day...any suggestions are greatly appreciated! Thanks!

Views: 335

Reply to This

Replies to This Discussion

I just wanted to give an update on what is happening since I posted on the 3rd. The very next day we decided to take Riley off of the Protandim to see if this made a difference before doing anything else...I did notice that his behaviors started when he started the Protandim and another mom did tell me her son's behaviors were affected on it as well. Well, I don't know if that was the cause (I researched each ingredient and potential side effects and came up with no red flags) but I am happy to report that his behavior changed almost immediately!! We saw a huge difference in about two days and since then he has not had any angry outbursts, has not gotten frustrated for no reason, and not cried for no reason. He seems to be back to his normal self!!! He still has trouble sleeping, but I deal with that after the behavior issues!

I just wanted to put it out there in case any other parents could benefit from this info! Thanks for all the help and advice!!!
Rhionnon, we have been giving Joshua a Melatonin each night before bed. It stops the night terrors and he is actually able to sleep the whole night. He used to be in our bed every night before we started using it.

Darcy, the caffeine has a complete opposite effect when given to people with ADD and those without. When given the caffeine, to someone with ADD, the brain is already going a mile a minute so this speeds the adrenalin up as well so the brain becomes level again. Makes sense? A friend of mine thought her son had ADD / ADHD. She bought an iced cappuccino for him and in minutes he was fine for the entire 4 hr. car ride. He too was diagnosed with ADHD later and she has stuck with caffeine instead... as did we.

Naomi
Naomi
How much Melatonin are you giving him? What time of the evening? Any particular brand? I have thought of giving him Melationin before, just haven't tried it yet. Riley typically has trouble falling asleep and wakes up at least once a night now once he is asleep...we also find him in our bed in the middle of the night! lol! His teacher reported that he has been falling asleep in class since January, but it has not affected his grades. Really, the sleep issues started at the same time the behavior issues started and I was wondering if it was the green tea extract in the Protandim since he does not get any caffeine otherwise? I appreciate the input...I will definately try it!
Rhi

Joshua's mom said:
Rhionnon, we have been giving Joshua a Melatonin each night before bed. It stops the night terrors and he is actually able to sleep the whole night. He used to be in our bed every night before we started using it.

Darcy, the caffeine has a complete opposite effect when given to people with ADD and those without. When given the caffeine, to someone with ADD, the brain is already going a mile a minute so this speeds the adrenalin up as well so the brain becomes level again. Makes sense? A friend of mine thought her son had ADD / ADHD. She bought an iced cappuccino for him and in minutes he was fine for the entire 4 hr. car ride. He too was diagnosed with ADHD later and she has stuck with caffeine instead... as did we.

Naomi
Joshua has 3mg of Melatonin about 1 hour to 1/2 an hour before bed. He is 54lbs. He rarely ever ends up in our bed anymore and morning is normal, because he has had a good sleep! We use a no-name brand. You can find it in almost any pharmacy department of any store.

Naomi
Rhiannon, we are dealing with the same issues here. Avery will be 6 next month and has been on Deflazacort for 18 months. (He has always been on 12 mg) He was such a mild mannered, sweet boy before starting but in the last few months, his behavior has become increasingly disruptive both at home and at school. I tend to believe that this is steroid related and after speaking with CCHMC, we have made the drastic decision to stop the steriods. :( It took us over a year after diagnosis to even start him on Deflaz because I was SO on the fence about the side effects. We've followed ALL of Dr. Wong and team's advice from the beginning with a low sodium diet, increasing fluid intake, etc. but this ADHD like behavior is effecting all of us so negatively that we felt like for right now it's the only choice for us. Like you, I can't imagine making Avery live like this every day because he knows that he can't control the crying, screaming, impulses, etc. and he is trying so hard.

Although CCHMC is concerned, they agreed that the only way we will be able to find out if this is DMD or strictly steriod related is to stop the steriods. I am very worried about seeing a decline in strength, etc. but after much thought and many sleepless nights, we feel like it's the only right choice for him now. If stopping has too many negative impacts, we can always revisit Deflaz. (Just a note...for us, Avery wasn't on any other suppliments other than COQ10, Vit D3 and calcium.)

Reply to Discussion

RSS

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

Members

Events

© 2019   Created by PPMD.   Powered by

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