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Leeandra Arhdeacon
  • Female
  • Hollister, CA
  • United States
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Leeandra Arhdeacon's Discussions


Started this discussion. Last reply by Rahul Deshpande Jul 28, 2014. 35 Replies

My sons doc recommended he take 200mg of Idebenone, i am having a really hard time frinding it. Where do you guys order it from? Also Green tea extract 150mg?

clinical trial

Started this discussion. Last reply by Leeandra Arhdeacon Jul 8, 2011. 92 Replies

Are their any open clinical trials for deletion 22-41?

DMD Clinics

Started this discussion. Last reply by Bill Cain Oct 23, 2010. 5 Replies

We are trying to make a decision on switchng from LPCH to another MDA clinic or DMD clinic, we live in California...any suggestions, where do you take your son and reason for choosing? We are…Continue

How often does your son attend PT/OT

Started this discussion. Last reply by Keith Van Houten Oct 8, 2010. 3 Replies

Hi there, I thought I would add this for discussion.......When was your son diagnoised? How soon did you begin him in Physical/Ocupational therapy? How often do they get therapy? and where??? I…Continue


Leeandra Arhdeacon's Page

Latest Activity

Leeandra Arhdeacon is attending PPMD's event

Webinar: Efficacy of Catena®/Raxone® (Idebenone) on Respiratory Outcome in Duchenne at Eastern Time Zone

October 15, 2014 from 12pm to 1pm
Efficacy of Catena®/Raxone® (Idebenone) on Respiratory Outcome in Duchenne: Results of the phase 3 double-blind, randomized, placebo-controlled DELOS trialSanthera Pharmaceuticals presented data of the Phase III DELOS trial during a webinar hosted by Parent Project Muscular Dystrophy on Wednesday, October 15th at 12pm eastern. Presenters:Prof. Gunnar Buyse (University Hospitals Leuven, Belgium); PI of the studyThomas Meier PhD, CEO of…See More
Oct 1, 2014
Rahul Deshpande replied to Leeandra Arhdeacon's discussion Idebenone
"Joshua's mom thanks for your very informative reply. The improved performance of Joshua is very good to hear. You believe this improvement is due to Idebenone only. I read that Idebenone is more for improvement in the Respiratory performance…"
Jul 28, 2014
Leeandra Arhdeacon replied to Moein's discussion Does Idebenone have something to do with behaviours and cognitive issues?
"We were told by our neurologist that Idebenone can cause hyperactivity."
Jul 27, 2014
David replied to Leeandra Arhdeacon's discussion Idebenone
"Smart Powders is out of stock of both 500mg and 150mg gelcaps. Where do others order theirs?"
Jul 27, 2014
Leeandra Arhdeacon replied to Holly Peay's discussion Propose research that is important to you
"I wish teachers would understand that just because he is capable of completing a sentence does not mean that he has the strength to complete every ounce of written homework. His teacher expects written proof of homework even though he has AT to…"
Apr 8, 2014
Leeandra Arhdeacon shared Kathi Kinnett's blog post on Facebook
Mar 20, 2014
Leeandra Arhdeacon shared Sharon Hesterlee's blog post on Facebook
Nov 26, 2013
Leeandra Arhdeacon replied to Sara Clime's discussion Mobility devices for races
Nov 18, 2013
Leeandra Arhdeacon replied to Sara Clime's discussion Mobility devices for races
"Team Hoyt has a new line of running strollers, ill get the link from them. "
Nov 18, 2013
Trinh Nguyen favorited Leeandra Arhdeacon's photo
Aug 8, 2013
Leeandra Arhdeacon posted a photo
Aug 8, 2013
Leeandra Arhdeacon is attending PPMD's event

2013 Disneyland Half Marathon & 5K at Disneyland

August 31, 2013 to September 1, 2013
Chase your dreams at the Happiest Race on Earth! Imagination is your destination on this 13.1-mile course that winds through the City of Anaheim, California and theDisneyland® Resort. Run through Sleeping Beauty Castle and discover the treasures that lie in Disney California Adventure™ Park while high-fiving your favorite Disney Characters along the way. There's a little magic around every corner for the whole family!The 2012 race sold out months in advance, so register early to secure your…See More
Jul 6, 2013
Leeandra Arhdeacon posted photos
Jun 17, 2013
Leeandra Arhdeacon replied to Leslie Becknell Marx's discussion what can I do as early intervention for a 3.5 year old still gaining abilities? in the group Early Years (diagnois-age 6)
"We did not start deflazacort until our son was 4 prior to loss of strength. We have our son on idebenone, d3, calcium, multivitamins, protantum. We have a large group on Facebook and many discussions ongoing about preventative carets well. I…"
Jan 2, 2013
Sherri Looper left a comment for Leeandra Arhdeacon
"Thanx Leeandra! Look forward to meeting you and everyone!"
Sep 20, 2012
Sherri Looper left a comment for Leeandra Arhdeacon
"Hi Leeandra, Thank you so much! I look forward to meeting the group."
Sep 10, 2012

Profile Information

About me:
mother of two awsome children, I like to sew, scrapbook and camp.
About my family:
I have been maried for 10 years and a mother of two beautiful children Nicholas 3, Isabella 16 months, I am proud that God chose me to be there parent!
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
Hollister, Ca

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Comment Wall (10 comments)

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At 7:55pm on September 20, 2012, Sherri Looper said…

Thanx Leeandra! Look forward to meeting you and everyone!

At 11:58am on September 10, 2012, Sherri Looper said…

Hi Leeandra, Thank you so much! I look forward to meeting the group.

At 12:29am on November 19, 2010, Misty VanderWeele said…
HI LEEANDRA :-) Now we are friends on here too! ;-)
At 12:40am on October 11, 2010, Rebecca Saulsbury said…
Hi Leeandra, I live in the Bay Area with my 10 year old son with Duchenne. I'm hardly ever on this site anymore but feel free to look me up on Facebook. Nice to meet you.
At 12:59pm on October 8, 2010,
Stephanie Matthes
Hi Leeandra! You can find information about the 2011 Connect conference in PPMD's October Newsletter! It's going to take place in Baltimore, July 6-10, 2011.
At 11:33pm on October 4, 2010, Lesley Wilson said…
Hi Leeandrea,
Yes, Jordan does go to PT... but so far not very often. The service is provided through California Children's Services. I think they also offer OT as well. Here is the application link: http://www.dhcs.ca.gov/formsandpubs/forms/Forms/ChildMedSvcForms/dhcs4480.pdf

Where did you find the pool therapy for your son? Right now Jordan takes swimming lessons, but I would love for him to get therapy in the pool.

I'm hoping you and your family are well!

At 10:18pm on October 4, 2010, Susan Rathfelder said…
Leeandra, I am so happy you were able to find some pool therapy for your son.
At 12:57pm on August 24, 2010, Susan Rathfelder said…
Jon did pool therapy when he was younger, it was great for him. Even though he isn't doing that anymore I think that is why is pulmonary function is still good. Jon had his pool therapy through a private/non-profit orthopedic clinic here in Long Beach. They had quite a few young patients with various diagnoses. For awhile there were two other DMD boys in with him, one older and one younger than Jon. They only had 2 or 3 patients in a the pool at a time and had both a PT and a PT assistant in the pool with the kids. The Dr. who sees him at our local Children's Hospital referred him.
At 8:17pm on August 23, 2010, Lesley Wilson said…
I know exactly what you mean. It's been a year and half for our family and I'm still trying to figure out my feelings - it's hard to process. But, please know I am always her to lend an ear or chat. Take care! ~Lesley
At 4:56pm on August 23, 2010, Susan Rathfelder said…
Hi Leeandra,

My name is Susan, my son Jonathan is 19 and we are in Southern California.
Sorry to have to meet you under these circumstances. Just wanted to send you a quick note to tell you to make sure you apply for California Children's Services. Here's a link: http://www.dhcs.ca.gov/services/ccs/Pages/apply.aspx. You may be able to get financial help if you meet the criteria, you can also get physical therapy and occupational therapy services. They will also send a therapist to your child's school to help them meet his needs.


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