Rhiannon Ramkissoon's Discussions (83)

Discussions Started (9) Replies Latest Activity

Gallstones?

  We got a call this morning about "unexpected resuts" on Carter's lumbar x-rays. Something showed up in the upper right abdominal quadrant…

Started by Rhiannon Ramkissoon in Research

2 Jun 9, 2011
Reply by Lindy Wilhelm

Gut motility problems/Erythromycin

  Not sure where to put this, but are any of your boys taking erythromycin for gut motility? Carter (6) has been having stomach aches for o…

Started by Rhiannon Ramkissoon in Research

4 May 18, 2010
Reply by Rhiannon Ramkissoon

Oprah

Not sure if this has been posted before, but I just came across this link to have a cause featured on the Oprah show. https://www.oprah.com

Started by Rhiannon Ramkissoon in Fundraising

3 Sep 8, 2009
Reply by Erin

Breastmilk

Wasn't sure if I should put this here or in Research... Has anyone heard of / tried using expressed Breastmilk as a supplement for our boy…

Started by Rhiannon Ramkissoon in Supplements

2 Feb 5, 2009
Reply by Kelvinsmom - Michelle

Illnesses on Steroids

Carter has been on Deflazacort for about 6 weeks now and doing well, we've definately seen increases in strength and stamina (I hate to jin…

Started by Rhiannon Ramkissoon in Steroids

7 Nov 1, 2008
Reply by Karen Barnett

Behavior Issues

I have a question for parents of boys on Deflazacort. For those of you who saw an increase in behavior issues, how long did it take after s…

Started by Rhiannon Ramkissoon in Steroids

11 May 1, 2010
Reply by Meeta Sharma

CK level

Have you seen varying CK levels when tested at different labs? Carter was first diagnosed based on CK level last summer (first was 13k and…

Started by Rhiannon Ramkissoon in Research

5 Aug 31, 2008
Reply by Kelvinsmom - Michelle

DAFO 3.5

We finally saw our local PT gain after seeing Dr. Wong in May (we've had insurance nightmares the past few months) and are awaiting authori…

Started by Rhiannon Ramkissoon in Physical Therapy

6 Aug 15, 2008
Reply by Rhiannon Ramkissoon

Disneyland 1/2 Marathon

I'm not sure if everyone got the e-mail from Disney today, but it had info about the marathon and a link to e-mail their media department a…

Started by Rhiannon Ramkissoon in Run for Our Sons

1 Aug 8, 2008
Reply by Laurie Paschal

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