HELLO ,today it friday january 23rd it first time we started deflazacort for our son .

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Congrats! I know it is a hard decision. Give it anywhere from 2 weeks to 2 mths and you will start to see a huge difference. My son took about 2 mths before I really started noticing, but other more observant parents saw change in as soon as 2 weeks!

Good luck!
Lori
I was just curious, where do you purchase the Deflazacort, I didn't think it was available in the US?
Please let me know how your son does on it. Thanks.
We get ours from the UK, Masters Marketing. Seph does very well. No negative side effects except stunted growth. He, 3 yrs later is still improving. His new trick this week is extended balancing on one leg 20+ seconds and hoping up to 3 times on one foot.

The pill is very bitter tasting, so if you can get your son to swallow, you will be better off. Seph learned how by watching his sisters swallow. He now downs 2 at a time!

Good luck!
Lori

Holly Kimball said:
I was just curious, where do you purchase the Deflazacort, I didn't think it was available in the US?
Please let me know how your son does on it. Thanks.
We purchase it from: MASTERS INTERNATIONAL UK ltd
phone#18009691152
fax#18009691153
url:www.masters-uk.com
or
contact person is JULIE EMMS
julie.emms@masters-uk.com
So phar my son is doing good.
Another question--does insurance cover deflazacort if it's not FDA-approved in the US? Anyone mind telling me how much it costs per month?
It's not covered in the US,and it depends 6mg box has 20pills for aproximatly 18$.
30mg has 10pills for approx 18-19$ and there is liquid form.
Tagni McRae said:
Another question--does insurance cover deflazacort if it's not FDA-approved in the US? Anyone mind telling me how much it costs per month?
The cost of deflazacort goes with how much mg your son will take.

Tagni McRae said:
Another question--does insurance cover deflazacort if it's not FDA-approved in the US? Anyone mind telling me how much it costs per month?

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