Does anyone know what hospitals are doing the Lorenzo Oil study for boys with X-ALD? I know that Baltimore does, but I'm wondering where else I can take my boys if I need to. I waited 3 months to get into Kennedy Kreiger, they called 2 weeks before our appointment and cancelled. They said they didn't have permission from the IRB yet. I was told they should know by the 1st week of January, and I'm still waiting. I just don't want to keep waiting. I want to apply wherever I can for this study, and then go to whoever can get us in first.
Since, all 3 of my boys have this I'm very worried that at least one of them will have the childhood form. I also know that sometimes it can take about a year for the Lorenzo oil to start working. I just don't want to keep WAITING, and then it could be too late.
Any suggestions would be appreciated!
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ALD Lorenzo's Oil Study
- By blissboys
- Posted February 8, 2009 at 8:05 pm · 15 replies
- In X-linked adrenoleukodystrophy (X-ALD) - Parents
- Shared with the public
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- By coco1252
- Posted February 9, 2009 at 6:37 am
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The only place I am aware of is KKI. Email Kim Hollandsworth at kennedy Krieger and see if she can't help you.
- By Emcee70
- Posted February 9, 2009 at 11:54 am
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Unfortunately, the only place that even has Lorenzo's Oil is Kennedy Krieger. There is another option, however, and that is mustard seed oil, which is available over the counter, but probably online is your best bet unless you live in a big city. Your sons can't be on the mustard oil if they are to be in the study. KKI has too many boys and not enough people to handle it all at their end. You can go ahead and get MRI's done of your sons, if your insurance will pay, and check with a pediatric neurologist to see if there is any damage yet. That might ease your mind a great deal. You can try to speak with Dr. Florian Eichler at Massachusets General Hospital, Dr. Charlie Peters at Washington University in St. Louis, or Dr. Lawrence Charnoff at University of Minnesota. All three of these doctors are doing research on ALD right now, but none have the Lorenzo's Oil. Dr. Eichler is a pediatric neurologist, one of the best in the country AND is researching ALD. Dr. Peters and Dr. Charnoff are doing bone marrow transplants. BMT's are also done at Duke University in North Carolina.
I know I've given you a lot of information, but I wish someone else was around to guide me through my decision-making when I was researching my son's ALD. He's 6 now, and in the study at KKI, has been since he was 19 months old. He's doing wonderfully, as good as anyone can ever hope for. Have you gotten your sons' adrenals tested? 95% of ALD boys have Addison's Disease, which can be life-threatening on its own. My son's Addison's is under control, but illness can always screw that up, so I have him under close supervision.
I really hope this helps. Like coco1242 said, call and email Kim Hollandsworth at KKI with your concerns. She gets so busy that it's hard for her to respond sometimes. But she'll listen.
I'll listen, too, if you need me to. Email me at caldwellmargaret@hotmail.com. Hugs!!
- By blissboys
- Posted February 10, 2009 at 8:11 am
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Thanks for your responses. Emcee70, thanks for all the info. There is so much I don't know about this disease. It's nice to know what I can do. My 2 older boys ages 4 & 3 have normal MRI's. So, that is good...I just hope we can get into KKI soon!
- By atriskto
- Posted February 10, 2009 at 11:47 pm
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Jamie has a son with ALD and VERY plugged in to what's going on. I've heard that KTC oil helps (never taken it) She's a terrific individual and I'm sure she'd help if she can.
jamiesbusy@msn.com
661-618-7603
Jason
- By wenALD
- Posted July 10, 2009 at 3:03 pm
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Have you gotten into KKI yet? Are you going to get bone marrow transplants? I thought having 4 children,, and 3 of them affected was terrible luck. It sounds like all of your boys are affected and I am so sorry.
My two boys who have ALD are very different. My oldest was diagnosed 21 years ago, and they said he would go downhill fast--he was 12 at the time.. His main decline is now happening and still very difficult to deal with. My other son is exhibiting symptoms of AMN, but his brain was never involved. They both were on the Lorenzo's Oil for many years and I think it truly helped. I would push for the oil, and you will learn to become pushy for your sons. It works.
May God bless you as you enjoy every minute when things are going well.. I know that is easier said than done!
- By blissboys
- Posted July 10, 2009 at 4:09 pm
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I was told by my endrorinologyst that my youngest had ALD. Thank goodness he was wrong. So, 2 out of 3 of my boys have ALD. I'm sorry to hear about your boys. I'm glad that your oldest son doesn't have brain involvement. That's what I'm hoping for. How are your boy's handling this? My boys were able to get into the LO study a few months ago. Thanks for your reply.
- By wenALD
- Posted July 11, 2009 at 3:41 pm
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Being that your children are all young I will warn you about what I did wrong, not that I think I could change it. When my girls got sick, I just minimized their problem and did not show a lot of concern.. When the boys got sick I immediately got them medical care. As my girls got older they resented this and they also were grieving for their brothers. I did not recognize their grief at the time. We have become close since they have become adults, but teen years were rough.
Just remember that as your youngest grows up, he also will be dealing with fears and grief if the older boys do not stay healthy. Try to remember to acknowledge these things with him..
Just a small suggestion from one who raised four chiildren, two who had the disease and my girls who did not. (one of the girls is a carrier).
- By blissboys
- Posted July 11, 2009 at 4:27 pm
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thanks for the good advice. i'm trying to prepare myself so that i'll be emotionally stable to give all of my children the love and support they will need when ALD symptoms begin . although, i'm not sure exactly how to prepare myself. how do you cope?
- By blissboys
- Posted July 11, 2009 at 4:30 pm
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I don't know if that sounded right. I am emotionally stable right now...at least I think I am. You sound like you're doing pretty good. Aren't you?
- By wenALD
- Posted July 11, 2009 at 5:12 pm
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I can remember fear that I would come home and one would have declined quickly. I thought I was maintaining well and only crying when not at home. But my daughter remembers me "always crying." Hmmm. I was told that "the next 6 months would be the worst in my life" by Dr. Moser. You know when my sons were not worse in that time frame, I finally started breathing normally.
I think I decided I had to be busy. So first I worked in a high school. ( My kids were 12, 11,9, 7). Then I went back to school and got my teaching credential. I think school became my escape. I needed it. I got to the point that all I did was make sure my boys got their Oil, which wasn't always easy. We tried to stick to the diet, but my son became suicidal and thus it was not worth it. But they never fought me about taking the oil. One took it in juice and the other in milk.
You know I have handled dealing with the disease now for 21years. You would think now I could say I was a pro, but no way. My oldest is starting to decline, and all I really want to do is cry. I use a walker, which would be fine, if they had been spared.. My younger son is starting to have balance problems, and I ache for him. The one thing I am thankful for is that I feel God's loving arms around me and I thank him daily for the wonderful husband of 35 years who has been my partner throught all of this. I know that we will struggle together if we lose our son now, but somehow we will make it.
Good luck to you and others like you who are just beginning this lifelong journey. God bless.
- By bmanbs
- Posted July 15, 2009 at 11:16 pm
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Remember though, that if involved in the study, and they give you the treatment, which could be lorenzo's oil or a placebo. No one knows which.... not even KKI!
I was going to do the adult study, but backed out at the last minute... everyones says it does not work for adults... and then there was the placebo thing!
Take care all!!!!!!!!!!!!!!
- By Emcee70
- Posted July 16, 2009 at 6:13 pm
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Only the adult study is the double-blind study, which has ended. The boys' study is strictly Lorenzo's Oil. Unfortunately, as of June, there are 100 boys in the study and they are not enrolling any more boys. They will try to do another study so that more boys can take part.
Please remember that only Kennedy Krieger Institute has the correct information on the study and you can contact them at any time.
- By hudels2
- Posted July 24, 2009 at 9:19 pm
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I just found out my grandson got Adrenoleukodystrophy. And he is 19 months old.I wish they can tell me how much time he got to live.He have been going down hill,I have been tring to get people to call me so i can know more about this.And my number is 205-633-4360,please call us ,my name is Richard.For i am not good on a computer.If we are not home, call back we will be here at 4pm ,thank you
- By blissboys
- Posted July 25, 2009 at 11:37 am
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hudels2
I tried to call you, but you weren't home. Is your grandson showing any symptoms? If so, what are they? I wasn't aware that a boy could already show symptoms at 19 months old. Is his MRI normal? If it is he should be fine for at least the next couple of years and probably longer. If he isn't showing symptoms...he may not even show any symptoms until he is an adult.
- By LaurieRB
- Posted August 10, 2009 at 3:06 pm
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My heart goes out to you, I know when I found out my son was affected it was devastating. But having 3 is so difficult. Since you have not been able to get your children into the study at KKI have you thought about any alternatives? I give my son Mustard seed oil, no red meat, and a very low fat diet. I also give N'Aceytlcisitine or Mucomyst. Steven, my son, was in the first study at KKI. In 2000 he started to have problems. He had a bone marrow transplant in 2001. Everything went great then 2 years later he started to decline again. The transplant was failing. When I inquired about the Lorenzo's oil, Steven was to old. They had a specific age group. I then read a website call FightALD. They mentioned mustard seed oil and a low fat diet. We started him on it and his fats were cut in half within 2 months. The doctors at Minnesota then discovered Mucomyst helps stop or in some cases slow down the breakdown of myelin. As far as we know he is stable. Of course he has other difficulties and problems but "fat wise" he is doing well. If you have any questions please ask.
Take care and I do hope this helps.
Laurie
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