Florida Families

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Comment by Harriet Meermann on April 9, 2011 at 11:56pm

I am having a fundraiser for duchenne md on April 29, 2011 in Miami ,Florida at the Sunset Elk's Lodge. I am looking for area families to join us in the fundraising effort. Please contact me at 305-554-5744    Thank you. I have a 4 year old grandson with duchenne.

Comment by Michelle Meunier on July 25, 2009 at 7:34am

There are possible side effects with every drug but studies show less side effects seem to occure with this med . Of course everyone can experience different effects . Calcort is a steroid but not the same as Prednisone , it is a corticosteroid which is a hormone the is natually produced in our adrenal glands . Check out Calcort on the computer netdoctor.com is a good one . Listen , Danielle is right the list of side effects for calaort is as long as Prednisone but our MDA doctor believes the boys seem to have alot less effects to this drug and there has been studies as well that confirm that . Any way look it up and see what you think . The pharmacy is Caligor Pharmacy 1226 Lexington Ave. New York New York 10028 . # 212-369-6000 . Hope this helps you . By the way thanks for your comment about my son , your son is a cutie too .

Comment by Danielle L Shoupe on July 25, 2009 at 12:46am

Also keep in mind that these are just potential side effects and not everyone will have side effects from taking this.

Comment by Danielle L Shoupe on July 25, 2009 at 12:45am

Indigestion, stomach pain, bloating, oesophageal (gullet) ulcer, thrush, muscle wasting of the upper arms and legs, irregular menstrual periods or no periods at all, upper body weight gain, excess hair growth, weight gain, increased appetite, increased susceptibility to infections, euphoria (feeling high), depression, problems sleeping, eye pain or problems seeing, eye infections, taking longer to heal, thinning of the skin, bruising, stretch marks, patches of reddened skin, acne, swollen ankles, feeling sick, generally feeling unwell, hiccups.http://www.patient.co.uk/showdoc/30003762/ These are all possible side effects of Deflazacort and it is a steroid type drug.
pay special attention to this line before choosing this drug muscle wasting of the upper arms and legs is a side affect of it.

Comment by Windy Jackerson on July 24, 2009 at 9:50pm

yes, please send me the info on where you get it in NY. I will talk to our neurologist and see what he says. At this point we really want him to take something that helps and has no side effects. Thanks for the info. That makes mehappy. By the way, your son is adorable!

Comment by Michelle Meunier on July 24, 2009 at 8:42pm

My son is 6 will be seven in Aug. He is taking Deflazacort or Calcort for short . We really think it is making a big difference . The only bad thing is it is not FDA approved so insurance will not cover it . The cost runs about $76 a month and we have to get it from New York . Our Neurologist thinks its great so we tried it . Believe it or not there are NO side effects . My son is maybe a little more sensitive at times but Thats It . There dont seem to be too many people in the US taking this because of the FDA but honestly that is one reason why we chose it . The FDA doesnt approve lots of good drugs that other countries have . It is something I would reccomend to anyone .

Comment by Windy Jackerson on July 24, 2009 at 4:18pm

How old is your son? May I ask what kind of meds? All I have read about are steroids and my husband and I have opted out of that path.

Comment by Michelle Meunier on July 24, 2009 at 7:19am

There is always something they can do . My sons meds have made a real difference in him . He is doing things he could never do like hop with both feet . You may want to give the MDA more thought . Good luck and if you need more info please let me know.

Comment by Windy Jackerson on July 23, 2009 at 6:49pm

I haven't take my son to mda yet. He is a little over two. Not much they can do for him. There is a mda clinic in Orlando but I do not care for the doctor at the clinic. Thanks for the info, it maybe worth the drive!

Comment by Michelle Meunier on July 23, 2009 at 6:28pm

Dr. Fernandez is at St. Pete at MDA and his office is in Tampa . May be far for you .

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