Reducing intake of long chain fatty acids

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Permalink Reply by Colleen on October 2, 2011 at 1:13pm

Hi Paul, 

I've asked doctors about thus, and they believe that it's not long chain fatty acids that are ingested which are the problem, but rather those that your body makes. Their advice as far a vlcfa's go is simply a very low fat diet which in Ostend isn't an easy thing to accomplish.

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Permalink Reply by Colleen on October 2, 2011 at 1:16pm

OMG this predictive text on my phone drives me crazy!!

For above post ( can't see how to edit / delete it):

asked doctors about THIS

which in ITSELF isn't an easy thing

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Permalink Reply by Paul Hurst on October 11, 2011 at 10:39am

Thanks Colleen:

                          I know getting a straight answer from a doctor is difficult.  Thanks.

 

Paul

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Permalink Reply by Kelly S. on October 6, 2011 at 4:53pm

Hi Paul:

 

Jamie Garrison Barlow, an ALD Mom, is a phenomenal resource when it comes to restrictive diet.  She has so many recipes and suggestions.  She is easily found on Facebook also.

 

If you haven't already contacted them, Kennedy Kreiger has lots of information available as well in regards to modified diet (especially those on the Lorenzo's Oil therapy).  They even have a dietician on staff for this.  Kim Hollandsworth is the departmental primary contact everyone goes to first -- drop her an email, I'm sure she'll be happy to help:

 

Kim Hollandsworth R.N., B.S.N.
Kennedy Krieger Institute
Research Nurse
Department of Neurogenetics
443-923-2772
Hollandsworth@kennedykrieger.org

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Permalink Reply by Paul Hurst on October 11, 2011 at 10:38am

Thank-you so much.  Another question if I may.  Last February I had more blood taken and it was sent to KennedyKreiger for genetic testing.  I have since been in touch with the original Dr. (MS doctor) they thought I had MS at the time.  The long and short of it is that the results have not yet been forwarded.

 

Can you tell me how long it takes for these things to be done and if there is anything I should relay to him to get these results?  It took three and one half years to get a diagnosis.

 

Thanks in advance.

 

Paul Hurst

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