After reading a posting today, I thought I'd post a few things about making a decision on whether to treat a child with Duchenne Muscular Dystrophy with steroids or not. There are currently 2 types of steroids that most folks use, Prednisone and Deflazacort. Doctors are working on alternatives for the future too. Deflazacort is a steroid, similar to Prednisone, but, that has shown to have less side effects. Deflazacort can only be purchased by paying the full price and ordering it from England (which we do). I do understand that a few folks have gotten their insurance company to cover the cost. I have not tried that battle yet. I believe Prednisone and Deflazacort are currently going to be under a new clinical trial too. We decided to treat Kelvin after many months of study, asking other parents, talking to doctors, reviewing the risks, clinical trials, reviewing presentations from different PPMD conferences, etc. We do realize the risks, which, can be great, even death. I remember a year or so ago when a young boy in England died from his stomach rupturing. My heart sunk. We have always, always made sure that Kelvin eats breakfast first and that he drinks something, prior to giving him his steroid. The doctors stressed this, that his stomach MUST be coated first, to be safter. Also, Kelvin's doctors have always told us to give his steroids in the mornings, as, otherwise, it will interfere with his normal cortisol levels. We have done that too, but, have heard of others who don't. I'm not sure why Kelvin's doctors said to only give it in the morning, as I'm not experienced in cortisol levels and what that really means. I did see someone post recently that they give it at night, which helps with defiant issues. I don't know the answer to this, but, it is interesting and I may have to spend some time researching when to give it. We give 15 mg per day, 1/2 pill, put in a spoon of Gogurt. Kelvin has been on the same dose for nearly 3 years. I also know that folks try many different regimens of treatment, for example, days on, days off, weeks on, weeks off, etc. I do go to 2 different great clinics, Columbus and Cincinnati, Ohio. They both have great doctors that are very proactive and informed and helped to inform me about the use of steroids. My son Kelvin has certainly had the negative of the steroids. Kelvin was always defiant and had a bad temper, but, steroids made it worse. He can be very intense. The first 6 months of steroid use, were the worst though. Also, he has had some weight gain, and has now fallen below the growth chart with height. Kelvin also has a lot of hair growth (on his back). All and all, I wouldn't have changed anything, as far as the decision to use steroids, as with treatments for him still years away (I hope & pray that they aren't too long), we are trying to keep him walking, as long as possible. We do know what the future may bring, but, with all the bad of steroids, having the possibility (studies show this) of walking around 2 years longer, and less spinal problems, fewer pulmonary issues, etc., was all we needed to continue on the path of steroids. And, by the way, studies show that being shorter is actually better with Duchenne, as the impact can be less on the muscle. I read a study done on height and there was a child with Dwarfism with Duchenne who did much better, they think, due to the height. For those who have chosen not to use steroids, it is certainly a personal decision, one of which should take a lot of consideration, especially the risks. We all find ways to treat our boys, in every way we think is best and because there is no treatment available yet (except those doing well on Vecttor), we are only left to make the decisions on our own and everyone is different, therefore, everyone chooses a different path. I based most of my treatment options on what many worldwide doctors said that they would do, if they had a child with Duchenne. I'm going to post a few clinical trial links for folks to read, as well as, a nice powerpoint presentation that I feel is very informative in helping parents to make such a personal decision, if they are thinking of steroids. The last link is a nice powerpoint from PPMD.
http://www.pedneur.com/article/S0887-8994(07)00554-1/abstract
http://www.ncbi.nlm.nih.gov/pubmed/15336688
http://www.ncbi.nlm.nih.gov/pubmed/11148511
http://www.nmd-journal.com/article/S0960-8966(06)00029-0/abstract
http://www.ncbi.nlm.nih.gov/pubmed/8170484
http://www.spineuniverse.com/professional/research/srs/2001/deflazacort-attenuates-progression-scoliosis
http://www.parentprojectmd.org/site/DocServer/biggar_steroids_2006.pdf?docID=1210
I hope this blog helps. It is just a quick run down on steroids, but more specifically Deflazacort.
Take care, have a great day!
I try to post factual information, however, please notify me if I post something incorrect, so that I can edit/correct the posting.
No comments:
Post a Comment