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Florida Families

Families from Florida that are affected by DMD/BMD

Members: 41
Latest Activity: Dec 12, 2017

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Comment by Michelle Diamond on September 18, 2014 at 1:56pm

Hello, We are relocating to the Tampa, St. Pete area and I am looking for the inside 411 on doctors in the area! My son is 19 and I would like to start researching new doctors before we arrive. Ant info or advice you could give would be much appreciated! Thanks!

 

Comment by stacy zamora on November 14, 2013 at 1:22pm
Hi everyone, didn't know this group existed. We just started a PPMD F.A.C.E.S group for Florida on Facebook. Anyone that I don't already know can friend me on FB and I can add you to our group or you can just look up F.A.C.E.S Florida and you should find the group. We will be having our first meeting on Dec. 15 (sunday) in Fort Lauderdale. Ryan Fischer and Pat Furlong will be attending.

Stacy Zamora

Staff
Comment by Stephanie Matthes on September 27, 2013 at 12:32pm

Tomorrow, Team USA's Olympic hero, Ryan Lochte, will be in his hometown of Gainesville, FL promoting two new frozen yogurt flavors — Lochte Lemon Drop and Champion Chocolate Fudge Brownie — with sales benefitting PPMD. Stop by the Yogurtology Gainesville location (3730 SW Archer Road) tomorrow to attend the launch with Ryan!

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.
 

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