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mariela pedroza Female Fullerton, CA United States: Favorite

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About me:: We live in Fullerton California and I'm hoping at this moment I find the right resources to help my child.

About my family:: I'm a mother of 4 children and our youngest 7 year old son has recently been diagnosed wth DMD

Name(s) of child(ren)/individual(s) with Duchenne:: Giancarlo Pedroza

Age(s) of child(ren)/individual(s) with Duchenne:: 7-12

City:: fullerton, CA

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Does anyone have a letter to their insurance company asking for authorization for medical treatment outside their state?

Posted on November 5, 2009 at 3:01pm 3 Comments 0 Favorites

I'm dealing with insurance company to authorize me for a consultation to see Dr. Wong , does anyone have a sample of a letter used in the past and was successful, please advise thank you

Information on starting Medical care for Giancarlo

Posted on November 3, 2009 at 1:39pm 4 Comments 0 Favorites

Does anybody have any guidance for us on selecting the right medical group in California to work with DMD, we leave in OC and I'm a bit confused on where do we start when it comes to selecting the best doctors, I need help please.

Hello, my son Giancarlo 7' was recently diagnosed 4 days ago with DMD ...

Posted on November 2, 2009 at 7:23pm 2 Comments 0 Favorites

Just wanted to share with the community and I had my first MDA counseling meeting today, I was given a lot of information, any advice for this new change in our family?

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At 7:03pm on November 4, 2009, Julie Garcia said…: Hello,

I am sorry to hear about your situation. You have found a good website to get help. Please feel free to e-mail me any time, marcnjulz@aol.com In the state of California the Gas and Electric companies provide a medical baseline discount. I know PG&E does. You pay so much per therm or kilo watt and when you go over your baseline you are charged more. The medical baseline allows you to have a bigger baseline at the lower rate. Also, if you have limited income they provide a discount on your bill.

Each county's social services offered vary. Get in touch with them and find out what yours offers you. Your medical plan should be based on what will best serve your needs. As time goes on, if there is no treatment or cure and dmd progresses you will need expensive durable medical equipment. It is important to know what your plan offers. Notice I say, if the dmd progresses. There is a lot going on with research and there is more hope today then when my son was diagnosed. My son, Nick is going to 18 next month.

There is a lot to take in but everyone here offers support.

I wish you and your family only the best. Are you hooked into Shriners an MDA clinic?

Kim and Cheryl are both wonderful people to know.

I have to run but please take care,

Julie

At 12:13am on November 3, 2009, Kim Maddux said…: Hi - Sorry sorry to hear of your son's diagnosis. My 10 yr. old son, Alex was diagnosed 5 years ago. It is lifechanging and devistating. PPMD has been my rock every step of the way. I have learned so much from this organization. Absorb everything you can to make the best decisions for your son...but do it in your own time. The first 2 months, I stayed away from the Internet and couldn't even say the word, "Duchenne" but after that, I absorbed everything I could and feel that my son is benefiting from our knowledge.

We use CA Children's Services for our son's physcial and occupational therapy - they have been great. You will meet alot of wonderful families on this website. Reach out anytime for anything you need.

All the best.

Take care.

At 11:35pm on November 2, 2009, cheryl cliff said…: Keep focused on the upcoming Utrophin Clinical Trials (go to www.BioMarin.com). That might be a bright spot. Also if you know your son's mutation (via DNA testing) that helps too with knowing if anything will come soon for Exon Skipping Therapy. Good things are coming, we just don't really know when at this point.

((hugs))
cheryl

At 8:26pm on November 2, 2009, cheryl cliff said…: Hi Mariela, So sorry to hear of your son's recent diagnosis. This is a very diffucult disease to deal with but I hope you will find strength here at PPMD, my husband and I have for the past 2 years. We don't live that far from you, Riverside. Our son just turned 11 and our other one, who just turned 10, is not dmd. Please feel free to ask anyone anything, we are all here for the same reason; give and recieve support and exchange information about current things, research for a better treatment/cure. I will be out of town this next week but will be around after if I can help please let me know.

stay well
cheryl