Hello everyone. My 7 year old was diagnosed with ALD in March of this year. We managed to obtain 2 bottles of Lorenzo's Oil and started him on the oil after his initial blood work was done. Unfortunately as he is symptomatic, he does not qualify for any of the Kennedy Krieger trials and therefore obtaining additional bottles of Lorenzo's Oil is going to be extremely difficult. Of course our doctors say that the oil will not help my son at this stage anyway but I am sure there are parents out there that would disagree with them. I am not going to just sit here and let my son get worse and worse without trying every option I can come up with. I noticed from my research that some individuals are using Mustard Oil as an alternative to Lorenzo's Oil. Has anyone calculated the amount of Mustard Oil needed daily to lower VLCFA levels or is anyone taking the oil and having regular blood tests done?
Any advice you can give would be greatly appreciated.
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How much mustard oil to use?
- By ConnorsDad
- Posted May 4, 2009 at 9:59 am · 13 replies
- In X-linked adrenoleukodystrophy (X-ALD) - Parents
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- By sjm
- Posted May 4, 2009 at 9:37 pm
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have you looked at the FightALD.org web site? There is information on that site about different suppliments including mustard seed oil.
- By ConnorsDad
- Posted May 5, 2009 at 2:16 pm
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fightald.org was where I originally had heard about mustard oil. I obtained the brand that is recommended there (KTC) but have not been able to find any information on how much I should be getting into my son daily. I emailed fightald.org to see if I could learn more about Mustard oil but have not heard back yet.
- By BH
- Posted May 5, 2009 at 2:30 pm
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4/5 (80%) of Lorenzo's Oil is glycerol trioleate, or "GTO" oil. You can buy GTO directly from Abitec, 800.526.4547. It's not cheap; about $700 (US) for 6.5 gallons. (It's a 50 lb. container @ $12.85/lb.) I'm not aware if they sell/ship to Canada, though.
I'm no doctor, but I'd bet whatever dose of LO your son was taking, he'd probably be OK with the same amount of GTO.
Also, GTO oil can be used for cooking. It's light oil with a very mild flavor, similar to canola oil.
- By rhess3
- Posted May 10, 2009 at 4:57 pm
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My 8 yr.old daughter has Alexander disease. she is still able to swallow and we have been giving her an acai berry juice blend called Mona Vie for almost 2 yrs. now and have seen improvement and growth. she also takes Barleans flaxseed oil for the omega 3&6's. I understand how the doctors make you feel. They always give us no hope so we search for our own answers. Good luck to you.
- By JAMIESBUSY
- Posted May 11, 2009 at 10:51 pm
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My son bradley has been taking the KTC pure mustard oil for the past 6-7 years.
We use the formula of 1 cc per kilogram of weight which was a suggested use by Ann Moser at KKI.
he is now 13 and there has been little to no further progression. His MRI's have been great and he is growing and developing into a wonderful teen boy.
to formulate lbs to kilo take the weight in pounds divide by 2.2.
my son is 135 lbs in kilo that is 61.3 kilo. he takes 30 cc in the morning and 30 cc in the evening.
We also suppliment with Evening primrose 1000mg, co0q10, flax and omegas, l-carnitine and selenium.
I can be reached direct @ jamiesbusy@msn.com
Janis at fight ALD.org can also get to directly to me.
Diane, wyatts mother can also help you with the mustard oil she can be fouhg at cureald,org.
margarite crespillo can also help.
We are all on facebook and talk on a regular basis.
there is also anoher group that is very active is yahoo group. ALDKIDS.
I hope this helps.
jamie Barlow, Bradleys mom
- By coco1252
- Posted October 4, 2009 at 4:38 am
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You have to get it from Kennedy Krieger. Email Kim Hollandsworth and she should be able to help you.
Hollandsworth@kennedykrieger.org,
- By AA
- Posted October 6, 2009 at 9:55 pm
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Did you notice that KTC is for external use only. Is it OK to take it internally?
- By AA
- Posted October 12, 2009 at 11:14 pm
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You are saying 30 cc in the morning and 30 cc in hte evening. Is this about 1 table spoon or more?
- By Fernbird
- Posted October 13, 2009 at 8:36 pm
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Hi there, if your son is symptomatic I suggest you/your family give serious consideration to a BMT. It is working a miracle for my grandson who became symptomatic before he was two (see my profile pic). We would be devastated if we lost him and are prepared to do whatever it takes to ensure he lives. Don't go for crap alternatives, my cousin did for her son and he is now a 16yr old giant in a wheelchair, unable to speak, eat, swallow, etc. He has been that way for the last 10 years.
You must also manage the Addison's condition as this is part of ALD and is life-threatening in itself if not treated/managed. This is body's inability to heal due to a direct adrenal gland fault. Remember ALD management is not just about solving the mysteries of the myelin sheath. ALD can and should be managed, that's all there is to it.
- By ConnorsDad
- Posted October 14, 2009 at 9:14 am
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1. Not sure if anyone has helped you out with the measurement or not AA. 1 tablespoon is about 14ml. You would want to give your son a little more than 2 tablespoons twice a day if you are trying for 30 cc (30ml) X 2.
2. Fernbird, I am not sure if you were inquiring about my son receiving a BMT or if your comments were directed at AA. My son did not qualify for a BMT due to his Loes scale rating. We were basically told to go home and wait for the inevitable.
3. With regards to using mustard oil, does anyone know if cooking with it changes the chemical composition which will make it less effective in lowering VLCFA? JAMIESBUSY, is your son drinking it straight or do you mix it in without cooking like in salad dressing, etc. The reason I ask is that we had been giving our son Mustard Oil every day and his VLCFA was barely effected. We mixed it in with various things but also cooked with it frequently. We used the KTC brand so I am not sure what else could have caused this. Any ideas would be appreciated.
- By Fernbird
- Posted October 14, 2009 at 11:19 pm
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Ok ConnorsDad, firstly apologies, I had not read all before I wrote the response to you yesterday and I know how lucky we were with Daniels Loes score, he was almost too far gone too. So definitely counting blessings. Our specialist was so apologetic that he had discounted the potential of becoming symptomatic before the age of 4.
I have not seen much (if any) mention by american families about the Addisons component of ALD and cannot emphasise enough how critical it has been in managing my grandsons conditions and quality of life. It is very new info to my family affected by the illness here in NZ . In managing both of my grandsons conditions, their bodies are unable to heal from any illness without a boost of cortisone. Please accept my apology if nothing I have written is new to you. I am not trying to be insensitive as we have been to that place where you and your family are right now. My heart and hopes go out to you. Like Lorenzo, our chosen ones all count! Peace, strength and love to you, Connor and family.
- By AA
- Posted October 31, 2009 at 10:42 pm
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Sorry for the delay in my reply. Thank you very much for hte explanations how to take mustard oil. Any side effects the mustard oil has? How soon we can see the resuction of VLCFAs? Have you tried GTO oil? I am wondering what is better?
Thanks to all.
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