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.

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Michelle Lucas replied to Michelle Lucas's discussion Lesch-Nyhan conference on June 20th and 21st.
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5 hours ago
Michelle Lucas posted a discussion

Lesch-Nyhan conference on June 20th and 21st.

I have spent most of my day on this computer sending emails and trying to prepare for our upcoming Conference in May. We are beginning to expand our Foundation and I am happy to announce two new members to our board. Amy Laws and Andrea Hol... See MoreLove Never Sinksloveneversinks.webs.comLove Never Sinks is an advocacy and support group for families with Lesch-Nyhan SyndromeSee More
5 hours ago
Michelle Lucas posted a status
"Love Never Sinks loveneversinks.webs.com Love Never Sinks is an advocacy and support group for families with Lesch-Nyhan Syndrome"
5 hours ago
Michelle Lucas posted a photo
5 hours ago
Jane Falova replied to Lucie Zelnickova's discussion Self-injurious behaviour - how did it start?
"Lucie My son Vladimir really started to bite during the night but his biting became worse very quickly, he started biting during the day in several weeks. It surely isn't your case. At first he had periods of biting, they lasted…"
6 hours ago
Jane Falova and Tammy are now friends
7 hours ago
Katarzyna posted a discussion

Low-purine diet

Hello, What are your experiences with low-purine diet? Do you still hold to the rules? In Poland, there is little known that diet, I feel lost. My son (6 years) very slowly gaining weight (now weighs 14 kg) and I wonder if it is well nourished. Do you have any experience? I will be grateful for your help. KasiaSee More
7 hours ago
Katarzyna replied to Lucie Zelnickova's discussion Self-injurious behaviour - how did it start?
"Hello! The symptoms that you describe in Dominik meant sleep myoclonus. Appeared in the evening, when Dominik went to sleep. He tried to sleep, cried a lot, slept, woke up after 15 minutes of crying, then slept very restlessly, threw his corpus, and…"
8 hours ago
Lucie Zelnickova replied to Lucie Zelnickova's discussion Self-injurious behaviour - how did it start?
"Thank you Jane! We tried gel fro growing teeth earlier - but it didnt really help. That´s why we started to think about self-injury. We were told that he SHOULD not be the case with self-injury, but dr.Visser also told us that with this…"
yesterday
Kim Miah is now a member of LND Net
Saturday
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…"
Apr 18
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."
Apr 18
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…"
Apr 18
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
Apr 16
Michelle Lucas is now a member of LND Net
Apr 11
Michelle Lucas shared Lowell T. Anderson's page on Facebook
Apr 11
 

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.

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Lesch-Nyhan conference on June 20th and 21st. 1 Reply

I have spent most of my day on this computer sending emails and trying to prepare for our upcoming Conference in May. We are beginning to expand our Foundation and I am happy to announce two new…Continue

Started by Michelle Lucas in Announcements. Last reply by Michelle Lucas 5 hours ago.

Self-injurious behaviour - how did it start? 4 Replies

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 6 hours ago.

Low-purine diet

Hello, What are your experiences with low-purine diet? Do you still hold to the rules? In Poland, there is little known that diet, I feel lost. My son (6 years) very slowly gaining weight (now weighs…Continue

Started by Katarzyna in Diet for Behavior and Health 7 hours ago.

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