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 Weird question about ADD and Lewy Body 
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Weird question about ADD and Lewy Body
Okay so - I read that folks with adult ADD are more likely to get dementia and Lewy Body dementia specifically (I fear I am hosed). Anyway - I have two boys who both have ADD but are also both gifted so I have never medicated them. My eldest just started High School this year and is having a harder time doing well in school based on his "smarts" alone. He is now having a hard time getting things in on time and being organized. I have considered putting one or both of my kids on ADD drugs, but I don't like the idea of drugging kids. I asked my mother's neurologist today about the relationship between ADD and Lewy body and if the kids should go on ADD drugs or if going on drugs like that would make it worse. He said he thought that was a really good question and he could imagine that it could work either way in terms of helping or hurting the brain more. He said that as far as he knows, he doesn't thing anyone knows what the implications of ADD drugs in children are for later dementia. I decided to post this issue here because many of you are more educated about these issues than many of the doctors I have taken my mother to thus far. Does anyone know if there are studies or research or theory on this issue? I would be interested in finding some guidance on whether it would be a good thing for me as a parent to encourage my kids to work through their ADD issues themselves of if getting them medication would help them structure their brains more during a developmental time and reduce their risk. Thoughts? Conjectures? Theories?

Thanks Liz


Wed Feb 26, 2014 11:26 pm
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 88
Location: Canada, Ontario
Post Re: Weird question about ADD and Lewy Body
Hi Liz; The one study I read about is in the European Journal of Neurology and was done in Brazil. They caution people to realize that it proves no connection between ADHD and later LBD but may suggest some causative factor shared by both. Since they don't know what causes LBD there is no way of knowing what if any factor these problems may have in common. Hope this helps. I think that drugs for ADD have most likely not been around long enough for them to have any certainty of their long range affects. But I may be wrong about that. Anne


Fri Feb 28, 2014 12:37 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 305
Post Re: Weird question about ADD and Lewy Body
Hi Liz, That's a great question! Sorry I don't have any insight for you at all but there are people on this forum who do. It may take a while but check back and see what kind of feedback you get over time.

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Mon Mar 03, 2014 5:27 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Weird question about ADD and Lewy Body
Thanks ladies for the input. I find myself so terrified of this disease that every time I forget something or notice that my own sense of smell isn't good or any of the other early indicators of this disease, i get nervous and wonder what, if anything, I could be doing now to reduce my risk. I especially wonder about the choices that I make, or don't make, for the kids and what I can do to reduce their risk. Getting information like this is important. I just don't know that this information is out there yet.

Thanks again - Liz


Thu Apr 17, 2014 1:08 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Weird question about ADD and Lewy Body
I think many of the rest of us are terrified of developing Parkinson's & LBD as well. (I know I am one of them!) Now the medical folks are saying that people may have this disease 20 yr. before symptoms start appearing… It's very scary. I don't know if there is anything that we can do to prevent it so I try to not focus on the fact that both sides of my family now have elderly people with dementia. Eat good food, exercise, try to avoid environmental toxins as much as possible, try to live an active, interesting and good life and donate to dementia research! That's about all I think I can do personally and not focus on what might happen.

Sorry, I have no knowledge of ADD, ADHD and relationship with LBD but what AnnieN just posted sounds reasonable. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Apr 20, 2014 11:03 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 305
Post Re: Weird question about ADD and Lewy Body
Lynn, you said it! And sharing our thoughts here let's us all know we have the same fear!

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Mon Apr 21, 2014 12:08 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Weird question about ADD and Lewy Body
Thanks guys for sharing. I agree that this is a fear that we all share. I look at my mother and the life she is currently living and I am terrified that that could be my future. If I could reduce that risk for my kids, I would. I just worry that if I put them on ADD drugs (or don't put them on ADD drugs) that I am making a choice for them and I have no idea what that choice is.

Liz


Fri May 16, 2014 8:09 am
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Joined: Sun Sep 07, 2014 3:42 pm
Posts: 1
Post Re: Weird question about ADD and Lewy Body
Those kids are so lucky to have a Mom as aware of the issues and as eager to find answers as you are. Whatever choice you make about medicating them, it will be out of your sincere love and concern and the extent of your knowledge at this time. You cannot fault yourself now or later for any future unintended consequences. You can only do your best, and trust for the rest. -Sue


Fri Sep 19, 2014 5:02 am
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