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Boys exiting the X-ALD study

bnkg
0 Recommendations

My wife and I just returned from our 7th annual visit to Baltimore for the X-ALD Lorenzo's Oil Study. Two of our three boys are in the study; our middle son does not have the biochemistry for ALD. Thankfully, the two in the study are asymptomatic and are doing very well with the oil and diet. Our oldest is now 10 and has just 3 years left in the study. That said, I've been thinking more about what happens once he and his brother are out of the study, i.e. access to Lorenzo's Oil, GTO Oil, preventing AMN, and what is being communicated to families as their children exit the study. I realize, the current study is focused on preventing the onset of childhood ALD as it should be, but what are families experiencing beyond the study?

5 replies

blissboys

That's wonderful news that your boy's are still asymptomatic. If you figure out what to do next...please let me know.

BH

Anyone can purchase GTO directly from Abitec Corp., 800.526.4547. It's not cheap; about $700 for 6.5 gallons. (It's a 50 lb. container @ $12.85/lb.)

Storing that much oil is a bit of a challenge. I parsed it out into half-gallon mason jars and put as many jars as I could in the fridge. The ones that didn't fit are the one's I'm using first.

Just curious... has either boy developed Addison's yet?

bnkg

Hi BH,
Thanks for your response. We have been really confident with the diet and oil, but get more and more concerned as our older son gets closer to 13 when he will have to exit the study. We would love to hear what other people have done with their children once they could no longer participate in the study. (Do they still watch the diet and supplement with oil? Is Lorenzo's Oil available for purchase? It's good to know that GTO is.)

Yes, both of our boys in the study have an adrenal insufficiency and take cortisone. Our oldest also has a bit of a platelet problem and supplements the Lorenzo's Oil with GTO.

Thanks for replying.

bnkg

BH,
If you don't mind me asking, do you have a lot of symptoms, and when did they begin? Also, do you find that the GTO oil helps you? And, did you ever take the Lorenzo's oil?
Thanks.

BH

This is probably a bit more than you wanted to know, but here it is anyway.

My mother had siblings and other family afflicted with ALD & AMN. She was not aware of this until later in life because she was adopted within her family and was not raised with her sick brothers.

Mom was determined to be a carrier (elevated plasma VLCFA) sometime around 1985. Following my mother's result, I was determined to also have elevated plasma VLCFA. At that time, around age 15, I was determined to be neurologically OK (neuro exam & MRI @ UCLA) and to not have Addison's.

I continued to be a very healthy as a teenager. Bicycle racing was my sport. From age 14 through 21, I was riding my bike 7k-10k miles/year, competing in local and regional races, and regularly qualifying for annual national championships. I never thought of myself as anything but a healthy person and I put the ALD/AMN out of my mind because, I thought, there wasn't anything I could do about it. That was until the LO movie came out in 1992...

I was at KKI once, sometime around the end of February in 1993. At this time, 23 years old, I was still neurologically OK, but was determined to have Addison's. Following the KKI visit, I started the low fat diet, including cooking with GTO, and was taking LO. And, of course, I started seeing an endocrinologist, taking corticosteroids. I realized, in retrospect, my adrenal insufficiency started when I was 21.

I took the LO for a only year or two. As I recall, the LO had lowered my platelets, and since its efficacy wasn't proven and I was a healthy adult, except for the Addison's, etc. etc., it seemed at the time the benefits of LO didn't outweigh the side-effects/"risk". However, I have continued with the low-fat diet and cooking with GTO. (I don't ingest any "dose" of GTO; I use it strictly for food preparation.)

Currently, I'm 39 years old. Aside from the Addison's, I still enjoy a healthy life. My wife and I have been married 15 years now. We have two healthy children -- unfortunately both daughters -- ages 4 and (almost) 7. I recognize that I'm very lucky to be as healthy as I am.

There was a period of many months earlier this year when I was without the GTO. During that time had one month where my legs felt a bit heavy and restless. Frankly, I got quite worried. That prompted me to start doing a bit of cycling once again, mostly with my older daughter on one of my tandems [http://www.facebook.com/photo.php?pid=27732&l=652fb81a96&id=1752401187]. Also, I saw a neurologist for the first time in over a dozen years. Neither of us knew what was going on, but the weird feelings went away, well before I finally got the GTO.

I can't say if the GTO does anything for me. I haven't had VLCFA bloodwork done in the last 15 or so years. I just think it can't hurt and the cost is relatively small price to pay for a small bit of peace of mind.

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