I was wondering if anyone could tell me how I would know if the steroids were helping or not. My son is 3 1/2 years old and has been on Deflazacort for about 4 months now. We haven't noticed any improvements in strength or stamina. He has recently started tip toe walking on occasion and there have been a couple of times when he would limp or drag a leg for a period of 3-4 days. I thought that we would see improvements in the first couple of months, but it seems that all we are seeing is new symptoms. I think that I read somewhere that steroids don't help everyone, but I am not sure about how that is decided.

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Hi Jennifer,
My son began deflazacort at about 3.5 as well. He is 6.5 now. I do remember it taking a while before I saw what I thought were improvements. I know it was more than 2 months, but don't remember exactly (I bet I could find it in this journal on his CB page www.caringbridge.org/visit/seph)..if you want to look there, go back to the posts around January of 06 and you may be able to glean some stuff out that will help you. I also know a boy who saw benefit in 2 weeks!
As for 'steroids not helping everyone', I do know of one boy who did not benefit from Deflazacort, but is benefitting to Prednisone. I think Dr. Wong waited about 1 year to determine if it worked or not. I don't know if that is the norm or if that was just that boy. There are so many things that are individualized with this disorder.
I know that I am not that much help, but maybe Seph's website will be or someone else can help you more!
lori
Measure the time it takes for him to get up from the floor. If you do not have a reading before starting the steroid, you may want to take one now and repeat after 3 more months. For my son @ 7.2, it touuk about 1 1/2 to notice change.
Dear Jennifer

My comments from our experience are as follows:-

We started much later and our younger boy (Joshua now 4), will probably also only start much later when there are definite signs of weakness. The side effects of steroids are huge and should never be ignored, I suggest you research as much as possible on these and keep a continuous look out for any possible complications as a result.

In so far as the steroids not helping everyone, is in my opinion a fact of certain boys cannot tolerate steroids and the side effects are to great to manage the benefits, dosages are a serious consideration and many various opinions are available, depending on who and where you live. Our strategy is to start on the regime of Dr Biggar in Canada, (I will send you a link if you want), maximum daily dosage in accordance of weight of the boys, along with huge dosages of calcium and Vitamin D. If they tolerate it like Justin has, the changes in strength and stamina are huge. Justin is still stronger that he was nearly two years down the road since he started steroids at age 6. His only noticeable negative is he is very emotional since the steroids, but this is managed by not antagonizing him.

In so far as the toe walking, I suggest you visit a good physiotherapist and get him stretching, Joshua goes once a week to physio, and gets daily stretching along with his brother, The opinion is that toe walking as a result of contractures is hugely strenuous on their muscles, so you want to keep them heel toe walking for as long as possible to minimize the impact on the already weakening muscles.

These are my opinions on the research I have done, I do not imply that this is the only or correct way, but this is the base we are working from. I also want you to understand that we appreciate that there are many different protocols that families follow, I recommend choose one and stick to it, there is no wrong way, but you can be demoralized and hugely confused if you change every time you hear something else from a different source.

Please feel free to rely and ask specific question on how we manage our sons condition, basically in short, we love them more, do more things and deal with the every cyclic emotional roller coaster of emotions, and very importantly, never give up HOPE, time is on our side, but don’t rely on it as there may not be enough time, so enjoy each moment to the full.

Good luck and God bless.

Colin
Thank you everyone for your replies. Lucas is taking 12mg of deflazacort and weighs about 32lbs. We haven't seen any emotional side effects after starting steroids. Lucas goes to physio, but the only tightening they see is in his hamstrings. We try to do the daily stretches, but Lucas is a master of wiggling out of the stretch, so I am not sure how helpful we have been. We continue on with it, with the hope that it is helping somewhat and that he will learn to tolerate it better.
My son started at 3.5 years and I feel we saw differences within two months. decreased drooling and increase muscle tone for speech. more able to coordinate running/fast walking up to and successfully kicking a ball (before his gate was swaggerred to the extent that he'd usually miss the ball before steroids). able to hang for a little while on a monkey bar, before dropping (not before). better gait eventually. after steriods he continued to make gains in skills and coordination all the way until 6yrs old. At that point he could go up stairs without rail (funny swagger and slower), jump and land on two feet. Hes still in good shape at 7 but may be beginning to loose a little strength..and fall further behind peers. still runs, more often uses stair rail. hope this helps. he started on prednisone and we switched him to deflazacort about 2 yrs ago...for us, not much (any) difference between the two, maybe less hunger with deflaz (or maybe hes used to the diet by then.)
Hi Jennifer,

My son Avery is 4.5 years old and started Deflazacort exactly 2 months ago today. He is on 12mg daily and weighs 32.5lbs. I have noticed an increase in stamina in the past month and he is able to run a little faster and can also balance in a moon jumper and jump when he never could before. (We've been to three birthday parties in the past two weeks, so that's how I was able to gage his balance and jumping in a moon jumper.) He still gets up from the floor using a modified gower manuever, which he's had since he started walking at 16 months...it's never gotten worse, but it hasn't improved with the steroids either. In our experience so far, I haven't seen huge changes as others have, but I have seen some improvement.
Hi Jennifer,

Our son started Deflazacourt when he was 4 years and 2 months. I can't remember exactly how much he weighed but it was around 38 pounds. He started on 18mg daily and is still on that dose at age 9. We noticed changes/ side effects within days. At first he had dry mouth and then he got hairier all over. His eyebrows got a bit fuller and darker. He was stronger within 2 weeks. The dry mouth and hair (most of it) went away. We have not noticed any other side effects. I think all boys respond differently and in different times.

Best regards,
Angela
Joshua is now almost 6, but started on deflazacort at age 3. He's always been on 9 mg thus far and he weighs 52 lbs. We noticed diffrences almost immediately. He could climb stairs instead of crawling, his back got a little hairy, he wasn't using the Gower movement any more, he could jump, he could even stand on one foot; and he got moody. He also gets dry mouth and goes to the washroom quite a lot. We solved the moodiness with the beans so that wasn't a big deal. We put supplements into his diet which made more of a difference. At school he knows when to stop at recess and in the gym. He does lag behind the others sometimes, but the class knows why and noone teases. The best thing for them to do is to know their limits though; and stop when they get there.

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