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Karen flor
  • Female
  • sao paulo,sp
  • Brazil
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Karen flor's Friends

  • Fred Luchetti
  • Jessica Divin
  • Ripudaman Singh
  • nathasha dubarry
  • Ian Anthony Griffiths
  • Michelle Gonzales
  • Brenna
  • Mandy
  • Julie Gilmore

Karen flor's Discussions

HELP with schools and IEP programs

Started this discussion. Last reply by Mandy Jun 2, 2011. 5 Replies

Hi!!! and HELP!!!!  My family is moving back to the States in Jan. We've lived in Brazil for the last 8 years.....While we're excited to be going home, I'm feeling insecure about the kids school…Continue

scooters vs electric wheelchair????

Started this discussion. Last reply by Sara Savalli Sep 13, 2010. 11 Replies

Hi all!!  First I want to say that it is such a blessing to have a site such as this one to exchange info and reach out to others that really GET IT!!! Now my second part, we took Lucas to Dr. Wong…Continue

holistic help for DMD in India

Started Apr 12, 2010 0 Replies

I received an e-mail about a DR Ramesh Bhardwaj who apparently a leader in holistic medicine{ if you can believe google} He's now treating MD and I wondered if anyone's heard anything about him.It's…Continue

RISK OF DIABETES IN DMD BOYS?????

Started this discussion. Last reply by Karen flor Apr 11, 2010. 6 Replies

If anyone has any info on this, I'd love to know.. My son, Lucas, 10 years old was diagnosed with DMD 2 years ago. He recently went on a school field trip and returned home with 3 empty water bottles…Continue

 

Karen flor's Page

Latest Activity

Karen flor replied to Lisa Jones's discussion Behavior Problem
"HI Lisa....I have been researching this lately myself....My son is almost 14 and has just entered puberty{ by endrocronologist's exam} He has been extra emotional....more meltdowns than a 2 yr old. Someone told me that all of his…"
Oct 10, 2013
Karen flor replied to Evelyn's discussion Stopping deflazacort
"Thanks Fred...I'm looking for a family therapist in our area to see if an "outside" person is easier for Lucas to talk to. Being 14 isn't easy no matter what...DMD/steroids/ ect greatly aggravate it. I wish Lucas could let go…"
Oct 9, 2013
Karen flor replied to Evelyn's discussion Stopping deflazacort
"Thank you all for sharing...my son Lucas is 13 almost 14, in puberty, and VERY difficult to deal with. This past evening he told me he felt "out of control" and needed help. I have wondered how much the deflaz played into this,…"
Oct 9, 2013
Karen flor replied to Regina's discussion Has anyone taken a Zappy Scooter through the airport/onto a plane?
"Hi....I am a flight attendant and have a son with DMD. As you can imagine, we travel often. He has the go-go scooter which we have traveled with. I am not familiar with the zappy but from photos I pulled up on line it appears to be a 3…"
Apr 3, 2013
Karen flor replied to mehrzad haidari's discussion Effects of fish oil
"I just use the local drug store brand...I forwarded this article to my sister in law. She's going to read it over. She said it's the online version not a published paper yet?? Guess that means something to scientists. Will let you know…"
Dec 6, 2012
Karen flor replied to mehrzad haidari's discussion Effects of fish oil
"I am not a scientist...just a mom. However, when we got Lucas' diagnoses, my sister-in-law, who is a research biologist that has studied fish oil exclusively for many years had me put Lucas on fish oil. He has been participating in the…"
Dec 5, 2012
Karen flor replied to JoAnne Powell's discussion Steroids and behavior
"Hi!!! I do not consider myself an expert, but would like to share with you my road of Duchenne in hopes it helps...First, no one road is right or wrong and second NO ONE knows your son better than you!!!!!  Having said that, my son has been on…"
Dec 8, 2011
Mandy replied to Karen flor's discussion HELP with schools and IEP programs
"Hi Karen, I live in South Florida, my son is 14 (almost 15) and I will be able to help you with IEP advice here. Please contact me when you move here."
Jun 2, 2011
Karen flor replied to Liisa Underwood's discussion Anyone have experience with Zappy scooter?
"Regina....I do not have the zappy scooter so I'm not familar with how it works, but I did get a scooter for my son about a year ago and he ABSOLUTELY loves it. He's like your son...mister independent...and what the scooter does…"
Jun 1, 2011
Mandy and Karen flor are now friends
May 29, 2011
Karen flor and Brenna are now friends
May 29, 2011
Carolyn Morrison replied to Karen flor's discussion HELP with schools and IEP programs
"Hi Michael, I personally would mention it because you will need support, and if they will not accept him now than maybe it is not the right school. Good luck!"
May 22, 2011
Michael replied to Karen flor's discussion HELP with schools and IEP programs
"Jasna from aus, would like some advise my 4 year old with DMD in the process of enrolling him to a private catholic school and only have been diagnosed not sure if l should mention to the school of his disease. feel that if l do he may not be…"
May 21, 2011
Karen flor replied to Char Burke's discussion Feeling left behind in the group Duplications
"HI Char...I'm sorry if I didn't express myself clearly....I never meant to imply that you where "jealous' of Cori. Since my son is up for the same trial as hers, I didn't want her to think I was jealous she was…"
Mar 12, 2011
Karen flor replied to irishgirl's discussion GSK trial of exon 51 skipping on Ambulatory Boys
"I agree!!!!!!!!!!!!!!!   Thanks for the info!!!!!!"
Mar 11, 2011
Karen flor replied to Char Burke's discussion Feeling left behind in the group Duplications
Mar 11, 2011

Profile Information

Name(s) of child(ren)/individual(s) with Duchenne:
Lucas
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
sao pauo sp

Karen flor's Blog

FACEBOOKERS

Posted on January 21, 2011 at 7:40pm 0 Comments

Calling all facebookers....Apparently a disaster relief company called GOT MOLD? is donating $1 toward DMD research for every LIKE they receive untill Jan 31st....Just go to facebook..look up GOT MOLD and click on their LIKE....every click you and your friends do brings us one step closer to saving our boys!!!!!!!!!!!!!!

Comment Wall (3 comments)

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At 7:39am on December 7, 2016, Benson Christopher said…

Hola, cielo
Mi nombre es Christopher Benson, nací el 15 de abril de 1975, mi padre era originario de Estados Unidos de América, y creció en Luisiana. ¿Soy el único hijo e hijo de mi familia, estoy aquí para encontrar una mujer en mi esperanza de vida es usted...? por favor escribirme correo (christopher7benson@hotmail.com) creo que me gustas.
Gracias
Christopher Benson.

At 11:22am on April 10, 2011, Brenna said…

Karen-

Thanks for replying, it's wonderful to know another family that is traveling to Columbus!  Our appointment was last Mon.  It went great!  First Sawyer did the PT evaluation.  This took alittle over one hour.  Parents aren't able to go with as this is being done, it was not scary to Sawyer as he goes to PT and OT 2 times a week for 2 hours each time and is very use to the equipment that was used.  After we were able to talk to Dr. Mendel.  He still wasn't able to tell us too much more than we were already were told.  33 boys are being screened and they are taking 12-16 participants.  The middle of May they will call to let us know if we were excepted.  They are 95% sure that there will be finacial assistance. June 1st is the projected start date. So glad to connect with you! -Brenna 

At 2:38am on May 19, 2010, Ankur Handa said…
thx a lot.
 
 
 

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