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Treatment for Adrenoleukodostrophy

AA
0 Recommendations

Ny son 21 years old has white matter damage on his MRI and elevated very-long-chain fatty acids in his blood. By reading on Internet this is confirmation for only one disease - Adrenoleukodostrophy. Is this true? hE HAS ONLY ONE SYMPTOM- weakness in his legs when he is tired.
Please give me information about this condition, everything you know, everything from your experience. What treatments are available? How to reduce very-long-chain fatty acids? What diet is good?
wHAT DO YOU KNOW ABOUT GENE THERAPY? Any information is appreciated.

Explore topics in this discussion:

Lovastatin Weakness Addison's disease Ativan Stroke Seizures Bone marrow transplant

27 replies

sjm

Adrenoleukodystrophy effects people in different ways and no one knows why. You should contact the Kennedy Krieger Institute for information. My nephew had ALD. I would get your son on a very low fat diet to start, very low, and then find out what suppliments he should take to compensate. I know foods like peanut butter are really bad and saturated fats and I read spinach too. Some oils are okay, I think walnut oil is one of them. ALD can effect adrenol function too. If you look on FightAld.org, there is info on foods etc and other useful information. There are some adults on this site dealing with this who could probably advise you. There is a doctor at the university of, I think it is, South Carolina doing a study on Lovastatin and ALD/AMN his name is Dr. Singh. Lovastatin is a cholestrol lowering drug and may help.
Sorry your son is going through this.

BH

Sorry to hear your son has ALD/AMN. Know that there are folks here to offer support.

To get started...

Some places of useful information:
http://ulf.org/
http://fightald.org/

Kennedy Krieger Institute (Baltimore, MD; http://www.kennedykrieger.org/) is the most well-known US institution doing research and proving treatment for ALD & AMN. They're running studies on Lorenzo's Oil treatment, for example.

Recommended diet is low fat diet, especially important is the reduction of the saturated fats. Many take mustard seed oil as a supplement. I don't; I prepare food using GTO, glycerol trioleate oil, the main component of Lorenzo's Oil.

Most boys/men with this disease also have adrenal insufficiency, a.k.a Addison's disease. Has your son been tested for this yet? Untreated Addison's can be deadly. Treatment is easy; one takes steriods. Ask his doctor if this issue hasn't yet come up.

AA

Thanks for your reply. Where do you get GTO oil? Does it help to reduce very-long-chain fatty acids? What can you recommend for low fat diet? How do you feel? Is the disease progressing? Do you have any symptoms?

BH

Yes, GTO and restricted fat diet does help to reduce the VCLFAs.

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. + shipping.)

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.

I am very lucky to have no neurological problems as of yet (age 39). I do have adrenal insufficiency though, since my early 20s. Please be sure to have your son tested for Addison's if that's not been done yet.

coco1252

I have a son who is now 25, he was on the Lorenzo's oil until he was 16. He does have adrenal insufficiency. He takes medication for that. As of this time he has no symptoms. He works in a warehouse and leads a very active life.

bella08leku

Hi, im gabbi i have a 14 month old with leuko. i was looking into treameant options and i came across fetal stem cell treatment @ medra.com. they say they've treated many incurable diseases. I was wondering if anyone else had looked into it?
gabbi

kkerr

Hi Gabby,
My son was dx with MLD in March 07 and had an umbilical cord blood transplant at Duke in May 07. I have never heard of the fetal stem cells though. Something to check out though. What type of leuko does your child have? Best Wishes.
Katherine

bella08leku

Hi, katherine
Well as of yesterday I found out that our neurlogist no longer thinks Bella has leuko. she thinks she had a stroke while I was pregnant. She says she pretty sure that the white matter making bellas MRI abnormal is actually just scar tissue from the stroke and has diagnosed her with cerebral palasy (Left Hemplgeia).
After her primary care doctor told us that it was not CP and that it was leuko. She dose have another MRI IN 6 months to make sure of that.
YES you should look into stem cell if you go to MEDRA.COM and look at hannah story it gave me hope! wish the best of luck for u and ur son!
gabbi

AA

Hi Gabby, my husband had phone conversation with MEDRA. Yes, they say that can cure all diseases. However, there are many negative feedbacks on Internet. Also, they don't want to provide any refferences that we can talk to real patients. It's hard to make a decision.

AA

Hi kkerr, How is your son doing now? What symptoms he had before? What symptoms now? Did the progression stop? How old is your son?

bella08leku

Hello Katherine, I was e-mailing with a guy who worked there whos son had the Fetal Stem Cell treatment. He works for MEDRA he can connect you with moms that have gone through the same thing. His email is copperken@cox.net
Gabbi

kkerr

Hi AA,
Jareds symptoms before transplant started about 2 - 2.5 years old. I first noticed a decline in his ability to speak. He could only string a few words together and then he was having trouble doing that. At the same time he was going "knock Kneed" I took him to ped, ortho and was told he would grow out of it. Then he started to fall a lot and his heel cords were getting very tight so his PT through early intervention suggested a neurologist. Our Dr. finally referred us and then he was finally dx. and transplanted. He lost all of his abilities during transplant. The last time he walked, sat up or ate a thing by mouth was during this time. We knew this was a great possibility but decided to go ahead anyway with the hope that in the future there is a cure. He does laugh and smile and is way stronger than 1 year ago. He goes to school (multiply disabled class) He loves it. Yes, we believe the progression is stopped. The MRI's have not changed in 2.5 years. Now we need to repair the myelin and I have hope that will happen at some point.
Katherine

kkerr

Well that is awesome that they don't think Bella has a leuko!!!
In regards to the fetal stem cells. I meant it was something you could look into when you thought Bella had a leuko. Since Jared has already had a transplant he has a normal enzyme level and any new cells would cause graft versus host disease in Jared. He now needs myelin repair to fix the damage already done. Best of luck.
Katherine

Teensie34

Beware of Medra, they have been exposed by the BBC's Panorama, the longest-running current affairs documentary series in the world

Before you wire your $30,000 dollars to the Bahamas, you should thoroughly investigate Medra. Watch below. Google ripoff report Medra for more information

BBC Panoramic

http://www.youtube.com/watch?v=qF6XQPKawwk&feature=related

http://www.youtube.com/watch?v=lnaNguAJsrQ&feature=related

http://www.youtube.com/watch?v=BaY9wOmQpQo&feature=related

http://www.youtube.com/watch?v=QfM1NKFOKkc&feature=related

Teensie34

OH, I am saddened to inform you that Hope for Hannah @ Medra.com is having uncontrollable seizures and her EEG's are much worse.

http://www.hopeforhannah.ca/journal_may_09.html

Our neurologist came in on Thursday afternoon and broke the news to us that we were already expecting. Hannah’s EEG is much worse (although she is sick). She is having very frequent absence, atypical absence and complex partial seizures that are very difficult to detect with the naked eye. These are often called,“subclinical”. She also had the three tonic seizures. He changed her emergency medication from Ativan to intranasal midazolam because Midazolam is stronger, and has a quicker onset than Ativan. He arranged for Oxygen to be installed in our home because her oxygen saturations drop after seizures and this can increase brain damage. He ordered a repeat MRI to see if there has been any change from the previous 2 MRI’s that she has had. He is looking for atrophy or areas of dysgenesis in the brain. He also ordered a muscle biopsy to complete the full metabolic/genetic screen from 2 years ago.

Why would Medra omit this information?

To lie by omission is to remain silent and thereby withhold from someone else a vital piece (or pieces) of information. The silence is deceptive in that it gives a false impression to the person from whom the information was withheld. It subverts the truth; it is a way to manipulate someone into altering their behavior to suit the desire of the person who intentionally withheld the vital information; and, most importantly, it's a gross violation of another person's right of self-determination

Google "Medra scam"

DMorgan

Gabbi who claims to have a daughter with CP, is also Mike, who is posting about his CP son on the Fetal Stem Cell Topix forum. He's working on both of these boards, to recruit patients for Medra. However,his insane threatening and profane posts are illegitmizing any shred of credibiltiy that Medra might have left

DMorgan

Teensie,

Have you gone to Ripoffreport.com. All the information that you will ever need to know about Medra is there. Just type in Medra in the search engine. This company and their sales reps are the worst fraud imaginable

DMorgan

AA,

Medra is a scam and you made the right choice in not going.

AA

Thank you very much everybody for the infomation. I hope there is treatment like MEDRA! Unfortunately, not a lot is available to treat this terrible disease.

AA

Hi DMorgan,

Can I ask - what symptoms you experience? Do you have AMN or ALD?

Thanks in advance.

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