Hi!

I know there have been many discussions about steroids, and I think we are going to start them soon, Jason Darienzo you convinced me :), but a lot of parents seemed to have started them when the boys showed signs of decline.  Dylan is 6 1/2 years and thank god in great form, no struggles, and hasn't shown any signs of decline yet, on the contrary he seems to get better, so I wondered whether it was best to start now anyway or hang on until he started to decline? It's such an effort to accept that I'll have to put him on steroids but I think the more advice I get the better? Our specialist is giving Prednisone here in Ireland as he said Deflazacort has more side effects. Thanks everyone

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Hi Anne, I think the general consensus in England/Wales (we go to Great Ormond Street) is to start when the boys (and girls) are still in good shape as steroids tend to 'work with what you have' and aren't so good at 'rescuing' if the kids have started to decline.

Also, you might want to check out the benefits of Deflazacort and Prednisone again - they both have side effects but Deflaz is associated with less weight gain which is good for our children (but more risk of cateracts). One isn't any better than the other I don't think. Deflaz IS more expensive though.....We had to argue for it for that reason.

 

Hope this helps!

no mira la verdad mi sobrino kevin se encontraba en muy buena forma hasta los 7 años...de hay empezo a declinar y a perder fuerza... pero no le han recetado hasteroides... no se por que sera por sus efectos adversos.

Hi thanks Lisa, it does help, I guess it's picking between the lesser of two evils... It makes sense that it would be better to start now and "work" with what's "still there". still hates the thoughts of it but hopefully it'll keep Dylan the way he is now for a good while longer! Hope Seth is doing ok ;)

lisa burke said:

Hi Anne, I think the general consensus in England/Wales (we go to Great Ormond Street) is to start when the boys (and girls) are still in good shape as steroids tend to 'work with what you have' and aren't so good at 'rescuing' if the kids have started to decline.

Also, you might want to check out the benefits of Deflazacort and Prednisone again - they both have side effects but Deflaz is associated with less weight gain which is good for our children (but more risk of cateracts). One isn't any better than the other I don't think. Deflaz IS more expensive though.....We had to argue for it for that reason.

 

Hope this helps!

Gracias Julian, los efectos adversos son la razon para cual no me habia decidida pero hablando con bastante gente ahora creo que al menos tengo que probar los steroides y a ver como se le pasa. Como lo ha dicho tambien tampoco quiero esperar a que Dylan empieze a declinar. Perdona mi espanol que hace tiempo que no lo he practicado :)

julian cespedes said:

no mira la verdad mi sobrino kevin se encontraba en muy buena forma hasta los 7 años...de hay empezo a declinar y a perder fuerza... pero no le han recetado hasteroides... no se por que sera por sus efectos adversos.

Another thing to consider, if you're interested, is that it seems most of the trials taking place require the boys to be on a steroid for a period of time.  Hayden (turning 7 soon) has been on Deflazacort for about three years now.  We asked that he be put on when we started to notice a decline, especially with him trying to go up stairs.

Since starting, we've noticed that his emotions are a little... heightened.  He has big ups, and big downs, but all in all, they are very manageable.  Cameron is about to turn 4 and isn't showing any signs of decline yet, but I suspect it won't be long.  In the event that I hear about a trial coming in our area, I wouldn't hesitate to start Cameron on Deflazacort if the trial required it.

Thanks Andrew, the trials are a really good point.  I'm not aware of any trials in Ireland and I think we probably would have to travel to London, which is not far, but would be costly on a regular basis. You're right though I should just get Dylan started with the steroids anyway before I see any decline, I would be too scared to have left it too late.  I hope he won't get  too many ups and downs...we'll just have to wait and see how he reacts to them and god help me!:)

Andrew Kerr said:

Another thing to consider, if you're interested, is that it seems most of the trials taking place require the boys to be on a steroid for a period of time.  Hayden (turning 7 soon) has been on Deflazacort for about three years now.  We asked that he be put on when we started to notice a decline, especially with him trying to go up stairs.

Since starting, we've noticed that his emotions are a little... heightened.  He has big ups, and big downs, but all in all, they are very manageable.  Cameron is about to turn 4 and isn't showing any signs of decline yet, but I suspect it won't be long.  In the event that I hear about a trial coming in our area, I wouldn't hesitate to start Cameron on Deflazacort if the trial required it.

Anna,

If Dylan was elligible for a study, the drug company would (should) cover your travel costs.

Please be at ease with your decision.

Andrea

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