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Subject :little guys and steroids..
2007-03-24 10:02:39
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| sethsmom |
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Joined: 2007-03-24 09:44:07
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Anyone have a little BMDer (under 10) on steroids? I keep being offered them for my 5 year old, but I've hesitated. Any experiences (positive or negative) that you'd like to share?
Kris |
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Subject :steroids..
2007-03-27 02:32:49
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| twinsmom |
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Joined: 2007-03-06 00:57:21
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my sons started prednizone at about age 9. drs kept pushing it, I pushed back a long time (since they were 5) but wish I hadn't. It was very positive thing for us, they take 60 mg. each on fridays & saturdays ONLY. |
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Subject :..
2007-04-03 04:18:37
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| sethsmom |
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Joined: 2007-03-24 09:44:07
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I'll have to ask the Dr about a part time steroid schedule and if it's right for Seth. I'm beginning to wonder if my hesitation to put him on steroids is more me not wanting him to be "degrading" versus the actual benefit his body might be getting out of it.
Thanks! |
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Subject :..
2007-04-09 06:39:56
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| bmdmom |
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Joined: 2007-03-07 02:22:22
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Nope - we aren't on steriods. I hesitate to try these yet. But Kris, I think I'm feeling similar to you about it. |
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Tanya mom to two BMD boys
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Subject :..
2007-04-09 09:57:03
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| sethsmom |
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Joined: 2007-03-24 09:44:07
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Well, Seth's annual appointment was last week and I opted for supplements over steroids. His bloodwork showed a low enzyme CoQ10 level so we're going to begin supplementing with over the counter CoQ10. Good news for us is that it comes in a liquid and a chewable. But, the price is awful. Dr Wong thinks it will help improve his endurance, or at least studies have shown it can help.
I'll let y'all know about our experience. |
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Subject :..
2007-04-12 05:40:55
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| Rhonda Bliss |
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Joined: 2007-02-27 08:21:26
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Sethsmom,
My son also had a low COQ10 level. My son was always coming down with infections and it has helped in that area a lot. We also saw a pretty big decrease in fatigue within a week or so, he is 8, weighs 68lbs and takes 200mg daily.
Also- I am a carrier and have achy muscles quite a bit(I thought it was just due to having 3 kids a FT job and so on, but I have toi wonder now if it isn't BMD related)-I take 100mg a day and also noticed a big difference- I got my mom to take it too and she also noticed a difference.
Rhonda |
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Warmly
Rhonda
Mom to Aaron-(exon 48 deletion) age 10 Dirtbike rider & video game whiz! |
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Subject :..
2007-04-13 08:42:10
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| sethsmom |
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Joined: 2007-03-24 09:44:07
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Thanks Rhonda! I'm glad to hear that the COQ10 has helped your son. I'm hoping it helps us too, particularly with his fatigue. The DR recommended a dosage of 100mg/L for Seth who is 36 lbs, which seems inline with what your son is taking.
Kris |
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Subject :prednisone..
2007-12-26 02:02:13
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| twinsmom |
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Joined: 2007-03-06 00:57:21
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hi all,
just an update on my boys & prednisone use. My husband and I have decided it is time to get the boys off of the 60 mg of prednisone. Dr. today said we can start weaning them off. They have not been walking since April, so there is no point in them being on it anymore. By Feb. 1st they will be taking their last dose. Same day I quit my blood thinner from my heart attack. i'm hoping gettintg them off it will decrease theiri appetites and help them slim down. (not to mention i think it may have sped up their maturing into teenagers).
Carrie |
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Subject :steroids..
2008-01-08 11:39:18
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| sethsmom |
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Joined: 2007-03-24 09:44:07
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Thanks for the update Carrie. What a difficult decision that must have been for you and them. Out of curiosity, did the DR mention if he expects their puberty to be delayed or if it should return to a more "normal" schedule now that they are off the steroids?
We go back to the Dr in April and I'm sure we'll be discussing this issue again. |
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Subject :..
2008-01-08 20:38:23
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| twinsmom |
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Joined: 2007-03-06 00:57:21
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I have not actually talked to the Dr. directly yet, We are scheduled to see him Feb. 14th. My husband and I had made the decision to take them off on Prednisone mainly because of their weight. So I called the clinic we go to in St. Paul MN and asked about the safest way to do it and they called the Dr. for us. (he is in Colorado most of the time). I think it is too late for us on the puberty issue as it has started already.. Not every having dealt with boys and puberty I only have my husband to go by and he said he thinks the boys started earlier then most because of the steroids. :oops: |
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Subject :14 month asked to try steriods..
2008-04-17 04:06:25
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| Evans' Mother |
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Joined: 2008-03-26 04:43:09
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I just took my son to the mda clinic.
He has zero clinical symptoms and the doctor suggested steriods once a week. I cannot believe they would even suggest it for a toddler with NO clinical symptoms. |
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