LND Net

Lesch-Nyhan Disease support group

The network for people living with the Lesch-Nyhan Disease, their parents, teachers and anyone interested in learning more about LND.

Latest Activity

Kim Miah is now a member of LND Net
21 hours ago
Jane Falova replied to Lucie Zelnickova's discussion Self-injurious behaviour - how did it start?
"Lucie Unfortunately, my son's biting started just like you describe when he was 2 years and 2 months old. It became really bad when he was 3 years and 6 months old. (Now he is 7 and he is quite a happy child!)  But if Lukas is…"
Friday
Jane Falova replied to Peter Subert's discussion Anybody with severe hypotonia?
"Thank you very much. I just wanted to know about vitamin E, because we were also recommended to take it, but in a bit different way. Now I see that taking it regularly doesn't bring harm. I hope you are doing well. Jane."
Friday
Ruch replied to Peter Subert's discussion Anybody with severe hypotonia?
"Sorry  I just saw the post today. Yes we have given her 200 cc of tonic water for years. we have never changed the dose. She has a gastro tube and we give it to her each evening when she is in bed. 1 cup or 200 cc of tonic water is the standard…"
Friday
Lucie Zelnickova posted a discussion

Self-injurious behaviour - how did it start?

Hello. Lukas (2 yrs.) has periods when he does not sleep almost whole night, keeps crying or at least mewling all the time. However he mostly does not look like being in any acute pain. During the day, he is able to sleep more or less normally (bit longer of course as he had no proper sleep during the night). This „periods“ may take even couple of weeks.He is diagnosed LNV – so far without confirmed self-injurious behavior – he had rare episodes of biting his cheeks but we were told by the…See More
Wednesday
Lucie Zelnickova and Tammy are now friends
Wednesday
Michelle Lucas is now a member of LND Net
Apr 11
Michelle Lucas shared Lowell T. Anderson's page on Facebook
Apr 11
Michelle Lucas shared Lowell T. Anderson's page on Facebook
Apr 11
Jane Falova replied to Peter Subert's discussion Anybody with severe hypotonia?
"Karen Do you give Ruch tonic water EVERY evening? Didn't you ever have to increase the dose? And how does she take Vitamin E?"
Apr 11
Ruch replied to Peter Subert's discussion Anybody with severe hypotonia?
"Peter  I have no idea if this will help you but our daughter, who is now 14 ( one of the few LNS females) suffered terribly from muscle pain at night a few years ago and her doctors suggested three things to help. 1. each evening before she…"
Apr 10
Joan Martin replied to Peter Subert's discussion Anybody with severe hypotonia?
"What medication is Daniel on? Enquire from GP whether he thinks any of Sinemet/trihexypheidyl/Sam-e might help. Stronger medication to be considered is Medazilam. Our son, aged 22 years takes all of these regularly ( except Medazalim which Is for…"
Apr 9
Peter Subert commented on Peter Subert's photo
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"Daniel in graduating costume:-)"
Apr 9
Peter Subert posted a photo
Apr 9
Peter Subert posted a discussion

Anybody with severe hypotonia?

Dear Community,We have a 23 old son, Daniel with LND. He is one of the most severe examples of LND, we believe. In the last couple of weeks, he has become more and more hypotone. He has so much, literally constant pain in the muscles, that he can not even sleep a minute (even he is on sleeping pills), he cries and has extreme muscular pains. Now, his mother holds himself in his lap for hours, to ease his suffering. We live in Washington, DC. and would be very thankful, if someone with similar…See More
Apr 8
Profile IconMegan Agne and Ady Escobar joined LND Net
Apr 8
 

Welcome to LND Net!

LND Net member Anne Powell has written a memoir of her experiences growing up with her brother, Bob who had Lesch-Nyhan. It is available at Amazon.com. Dr. William Nyhan wrote the Forward and portions of the book were published in the December 2013 Journal of Genetic Counseling.

Forum

Self-injurious behaviour - how did it start? 1 Reply

Hello. Lukas (2 yrs.) has periods when he does not sleep almost whole night, keeps crying or at least mewling all the time. However he mostly does not look like being in any acute pain. During the…Continue

Started by Lucie Zelnickova in Announcements. Last reply by Jane Falova on Friday.

Anybody with severe hypotonia? 5 Replies

Dear Community,We have a 23 old son, Daniel with LND. He is one of the most severe examples of LND, we believe. In the last couple of weeks, he has become more and more hypotone. He has so much,…Continue

Started by Peter Subert in Announcements. Last reply by Jane Falova on Friday.

mouth guard/ appliance 7 Replies

my son,joshua is 6 years old. he started biting his hands since 2  and also he's been biting his cheek inside of his mouth since 4. we've been using arm brace and mouth guard. recently he's biting…Continue

Started by jayoung im in Announcements. Last reply by Kristine Beck Apr 5.

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