Lorenzo's Oil Study at JHH

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Permalink Reply by Scott Orn on September 18, 2009 at 12:54am

Hi Bill,

I found this link on Lorenzo's Oil

Here is what it said: http://www.naturalstandard.com/index-abstract.asp?create-abstract=/...

Lorenzo's Oil for Adrenoleukodystrophy
Johns Hopkins researchers have completed a study on boys with Adrenoleukodystrophy (ALD) testing the efficacy of the treatment known as Lorenzo's Oil (4:1 glyceryl trioleate-glyceryl trierucate). The trial involved 89 boys age seven or younger who had the X-ALD gene with no symptoms. The boys were followed for an average of seven years while they took Lorenzo's Oil and followed a fat restricted diet. They were tested using MRI studies and the monitoring of plasma hexacosanoic acid levels. Results showed 74 percent of the boys showed no signs of disease progression after treatment with Lorenzo's Oil. Of the boys, 24 percent developed MRI abnormalities and 11 percent developed both neurological and MRI abnormalities. These numbers indicated a large reduction in normal disease progression. Other potential treatments being studied for ALD include the cholesterol drug Lovastatin and bone marrow transplants.

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Permalink Reply by Bill Groel on September 21, 2009 at 8:57am

Here's an update from our annual visit to JHH for the LO Study. I sent this to family members to keep them informed but it may be helpful for others as well. See the word document attached below.

Attachments:

• ALDSupport.doc, 39 KB

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Permalink Reply by Scott Orn on September 23, 2009 at 2:49am

thanks for posting Bill!

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Permalink Reply by Bill Groel on September 23, 2010 at 1:44pm

Is there anyone else out there who has kids in the LO Study? I've yet to connect with anyone who is in the study. On a related note for anyone else interested. The funding for this study has been partially reduced. The MRI's and overnight hospitals stays are no longer in the budget. MRI's for all patients will be done at their own expense prior to the annual visit. Everything else seems to be the same.

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Permalink Reply by Michele Birrittieri on September 25, 2011 at 4:34pm

Hi Bill,

 

I too have two sons enrolled at KKI, ages 2 and 6.  How long have your boys been in the study?  So wonderful they are doing well!!  I haven't really used this website as an area of support because I found some groups on Facebook with a lot more activity.  If you'd like to join us over there, the groups are Leukodystropy, ALD support and Lorenzo's Oil study support.

 

Warm regards,

Michele

 

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Permalink Reply by Bill Groel on September 25, 2011 at 9:07pm

Michele:

Thanks for reaching out.  I hadn't been monitoring the site much given the infrequent activity.  Maybe that will change.  Unfortunately, my we are old pro's at dealing with ALD.  As I mentioned my wife's brother died from ALD over 30 years ago at age 8 and her uncle had AMN.  I very open to sharing my experience and any other information about some of the up and coming treatment options.  I try to keep in touch with some of the leading information in gene therapy as well.  So, how did you know your boys had ALD?  Did one have an issue due to low cortisone that led to finding out?  How are they doing on the oil? Both of my boys have modified doses from time to time and take more GTO in relationship to LO because of blood platelet issues.  Just curious... keep in touch.

 

regards,

Bill

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Permalink Reply by Brenda Yaste on November 10, 2011 at 9:02am

Hi Bill,

We are in the same boat as you.  Our son is 13 now.  The study carries them through their 13th birthday.  Therefore, we will be existing the study in 06/12.  This makes me apprehensive. They do not throw you out to the curb so to speak when you are finished however.  We were told that if we wanted, Dr. Raymond would be willing to continue to look at his MRI's and meet with us.  I did ask what the prognosis was for boys who were in the study and are no longer.  They really couldn't tell me anything because unless the boys keep in contact with them, they have no idea how they are doing.  This scares me also.  I will definitely have tons of questions for them at our next appointment.  I certainly wish the best for you and your family.

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Permalink Reply by Michele Birrittieri on September 26, 2011 at 12:02am

Hi Bill,

With regard to your son who will be exiting the study in 18 months, I have seen alot of discussion on the Facebook support pages about Mustard Oil being consumed.  Here is one response to a discussion that was started on Facebook.  If you want, I can raise the topic again and get back to you.

 

Hello -- I use mustard oil as it is similar (in efficacy) to Lorenzo's oil. But, you can cook with mustard oil and when you do the taste disappears. I use it to make popcorn and really all of my cooking -- most folks drink it in juice. It is important to keep it from heat or it can turn rancid. I buy my KTC mustard oil from www.indianblend.com... they sell a lot of it so they are always getting in fresh stock. I recently ordered some with a 12% off coupon that they emailed to me.I know that KTC is the brand that is "approved" and recommended as not alternated. Some brands of mustard oil are altered. I believe that all mustard is listed as "for external use only" but I know in some cultures (e.g. indian) it is consumed -- i've never had any problems, it's fine.

 

 

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Permalink Reply by Michele Birrittieri on September 26, 2011 at 12:07am

Bill,

I forgot to mention, if you go to my page you'll see our story there.  But yes, it was actually the hyperpigmentation that caused us to have my oldest son tested for Addison's.

 

 

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