LND Net - Lesch-Nyhan Disease support group

Lesch-Nyhan Disease support group

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

Latest Activity

crystalanddavid is now friends with alisha durtschi and Amy Laws

3 hours ago

Rebecca Mannick replied to alisha durtschi's discussion 'spitting out food'

Alisha, Sorry it took so long for me to get back to you, but I haven't checked the site in a few days. Anyway, Brody is only 27 months old, and he doesn't self injure yet. We got the G-tube inserted when he was just 18 months old, so it's not real...

11 hours ago

Kimberly S Varian RDH replied to Kimberly S Varian RDH's discussion 'Mouth Gaurds'

I think that you are on to something here. I'm still in the loop. I have just been reviewing some of these ideas with different dentists and different lab technicians. They have all been touched by your challenges. Here's to hoping that you all h...

yesterday

Chris Morehead just here to help :)

yesterday

Chris Morehead added a discussion

Lesch-Nyhan Variant

Hi everyone, My name is Chris and I'm 24 and living in Australia. I have a mild variant of the Lesch-Nyhan Disease. I have some slight physical and mental signs of the condition, which is enough to notice and cause me alittle discomfort from time ...

yesterday

Chris Morehead is now a member of LND Net

Welcome Them!

yesterday

Wicklund replied to alisha durtschi's discussion 'spitting out food'

Come to think of it, Davey doesn't usually try to pull out his tube, so the sling is only as good as the velcro hold, as far as self injury goes. It DOES stop from accidental tugging or pulling, though and lets him have free movement all over the ...

yesterday

Wicklund replied to alisha durtschi's discussion 'spitting out food'

Alisha, We couldn't sleep well the first week with his G-tube cuz we watched it pull on his site since he rolled around a lot before sleeping. Sometimes he would say "owie". I was a nervous wreck thruout the night. Some other websites say to tape ...

yesterday

Tiffany updated their profile

on Monday

Tiffany replied to alisha durtschi's discussion 'thought I'd share something that Tristan started doing!! It's so cute'

THAT'S GREAT! Yes jordin spits out food sometimes i think because it is to big. The other times it is behavior. So you are able to have him in the service? I would never be able to do that... He would scream and cry. Thats great.

on Monday

alisha durtschi replied to alisha durtschi's discussion 'spitting out food'

Thanks Allison i will look for those yogurts!

on Saturday

alisha durtschi replied to alisha durtschi's discussion 'spitting out food'

Rebecca, I was wondering if Brody self mutilates. Tristan is really bad, if he even gets a cut on his finger he will keep hurting it until it gets infected. Our number one concern with a g-tube is that he will just pull it out and it could cause m...

on Saturday

Allison Early replied to alisha durtschi's discussion 'spitting out food'

Look for Dannon" La Creme" yogurt - or YoBaby. They are flavored. Just a thought.

on Saturday

Rebecca Mannick commented on alisha durtschi's photo 'kids 019'

SOOOOOOOOOOOOO CUTE!!

on Friday

Rebecca Mannick commented on alisha durtschi's photo 'kids 063'

I love this picture!!!

on Friday

Rebecca Mannick replied to alisha durtschi's discussion 'spitting out food'

Hi Alisha, Brody was a horrible eater when he was about 12 months old. He'd only drink 2 ozs at a time, and couldn't chew and swallow any solid food. He was so thin his ribs were pertruding. So, threw many tears we decided to get the G-tube insert...

on Friday

Welcome to LND Net!

LND Registry is now LND Net.

Forum

spitting out food 16 Replies

Hi everyone, Does anyone else have problems with their kids spitting their food out? Tristan has started this and usually tries to do it almost every meal. He eats really good but I will catch him ...

Started by alisha durtschi in Caregiver Exchange. Last reply by Rebecca Mannick 11 hours ago.

Mouth Gaurds 26 Replies

I am a dental hygienist working on her graduate degree through Northern Arizona University. I am sad to say that even as rare as this condition is, I have actually seen three cases during my tenure...

Tagged: teeth, gaurds, mouth, dental

Started by Kimberly S Varian RDH in Caregiver Exchange. Last reply by Kimberly S Varian RDH 1 day ago.