Behaviour
My son has been on deflazacort for only 1 month. I know that one of the side effects is behavioural change (hopefully which will leave as he is on it longer). However, I miss my son. My little guy is so angry and emotional and is having meltdowns ALL the time. As I said I know its a side effect but its really hard and nobody else understands. Have any of you experienced this? I am so sad and just want my little boy back, the one that laughed and cuddled and was full of joy and love. I hate this disease.
Replies to This Discussion
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Permalink Reply by Joanne Haswell on
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There have been many many posts re this issue-search behavioral problems and search cod liver oil. We use Barleans Kids DHA omega 3 6 9 pure Icelandic C L O in a fruit flavor daily. Hope it helps. We haven't used the coffee beans.
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Permalink Reply by JoAnne Powell on
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Nicole, I feel your pain. There are many posts on this site (thank goodness for the advice from others) and it does somewhat make you feel a little better to know it is not just your son but it is very tiring to deal with, especially when your son was an angel prior to steriods. I know my little guy never gave us trouble until about 5 months after the start of his deflazacort. I actually have a psychology/behaviorist background and it wears me down! It's like he is an emotional roller coaster and can't do anything to control it. I do not want to put him on medicine for it because I feel like if I can do some kind of behavioral intervention instead, I would feel more comfortable with that personally. I have tried the cod oil but he will not take it, I have tried it also and it does have a terribly slick and oily feel to swallow. He will not do coffee beans...so as you can imagine...I feel hopeless some days. I, like you just hope in time it gets better and I am constantly trying to praise the good things/days to him and it is getting a little better. I think the more I work with him about the positives, the better he is responding. Just try to stay positive with your son and keep your head up. Praise him for every little good thing he does and try to be patient with the other "times". This is a terrible disease but we will over come it and fight it in every way we can together! We are all here for you!!!
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Permalink Reply by Lisa Groeger on
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How old is your son?..My 12 year old started out doing high dose weekend steroids and changed over to daily deflazacort when he was 10 and felt like he needed the extra boost. My personal opinion and obviously not medical is that the little boys shouldn't start out on daily steroids for many reasons one being behaviour issues..but that's just my experience and opinion. My older son never did daily steroids due to weight gain and he is almost 16, in an electric chair but still transfers, dresses, showers, toilet etc. on his own. He is still on high weekend dose of prednisone. we struggled with some behavior issues on the weekends when they took their medicine but it wasn't all the time. It seems their behavior was more difficult when they were little and maybe they are older and just managing it better..Not sure..I hope it gets better for you..
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Permalink Reply by Nana on
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My heart goes out to you. We have had similar experiences with our son (who is now 8). Is your son taking deflazacort daily? If the side effects do not get better (you can discuss with your neurologist how long you should wait) you may want to consider either lowering the dose or changing how you give the deflazacort. We had many discussions with our neurologist. We initially tried high doseage weekend of deflazacort but found it produced too much of an emotional roller coaster effect. We were concerned that daily dosing would effect his growth too much (we have delayed bone age in the family) and ended up deciding to try alternate day dosing at a low dose and slowly increased the amount over time. We were warned that alternate day may not be as effective as daily in terms of slowing the progression, but we made our peace with the situation deciding we would rather have a better regulated child than one who was constantly having meltdowns. So far we (this includes the neurologist) have been pleased with the effects (we have done alternate day now for over a year). He has returned much to his happy self with great love for life. He has not gained excessive weight, is still growing and is still pretty mobile (he can still run short distances, can climb stairs with assistance (we try to limit this as much as possible), and is able to ride his adaptive bike almost everyday. Every child can respond differently and we can only do the best we can to try and adapt and hang on to all the love and joy we can.
Best wishes to you.
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Permalink Reply by Joshua's mom on
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When Joshua started deflazacort, 4 years ago, he too had the same effects. We did start the chocolate covered coffee beans, coffee, ice cappuccinos or regular tea & it seemed to help a great deal! For the last 6 months we have moved to green tea. We have taught him to breathe if he's feeling overwhelmed and if it gets severe, he goes to his room until he does calm down (sometimes a 1/2 hour). We don't call it a time-out, we call it down time. Many times though, all he needs is a hug. The deflazacort can cause A.D.D. so to treat it as that, has been our best approach with Joshua. When acting like that, that's not our boy, but it is part of him. We don't punish him, but there are repercussions. Leave the situation, even if it does mean leaving a store; teach him to breathe deep to calm himself down; and to think about what did happen - what would he think if his brother or a friend acted that way. Is it something so simple which is worth the reaction? Sometimes it is, but most of the time it just isn't. Once that started he would be allowed to express what he was feeling with nothing said then a few minutes later he would tell us, without asking, whether it was worth getting so upset over. Joshua also takes many supplements, including Omega 3-6-9, to counteract many side effects.
Naomi
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Permalink Reply by Paul Cliff on
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I just saw this. For Alexander, the really explosive nutty stuff took about a year to get through. He's 12 and still walking, sort of. Tradeoffs. DMD SUCKS.
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