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
Ilona replied to Kelly M. Simmons's discussion 'Adaptations for children with Lesch-Nyhan syndrome in the classroom (materials)'
Hi Jim, thanks for all the info and pictures. The case looks great and it's something I will definitely look into.
Ruch left a comment for Jim Sipich
Hi Karen
Congratulation to Andrew on his birthday!!!
You are so right it is so hard to see where the time has gone. They grow up so fast!! Ruch is going to be 12 in a little over a month and I can not believe that is happening. It seems like…
Jim Sipich left a comment for Jim Sipich
Hi Karen, it's Karen, Andrew's mom. Andrew actually just turned 14 on Tuesday! Can't believe how quickly that happened! Let me know if you have any other questions about the iPad setup that Andrew…
Ruch left a comment for Jim Sipich
Jim
thank you for putting up the pictures. They are really great. And thank you for all the valuable information you gave about both the ipad2 and the case.
How old is Andrew?
Karen
Jim Sipich replied to Kelly M. Simmons's discussion 'Adaptations for children with Lesch-Nyhan syndrome in the classroom (materials)'
OK, better late than never. I'm sorry for being so slow in getting these pictures on. I am hoping these pictures show how Andrew uses the iPad (he has an iPad2). The case, which I highly recommend (we have tried a…
Susan commented on Jim Sipich's photo
Thanks for sharing these pictures. It looks great!
Photos posted by Jim Sipich
Chloe Tudor replied to Berlingo's discussion 'Janek and DBS'
I know that you don't know me. I've only just joined the site, for some information on a project that I chose to do because of my brother having the condition for five years before passing away.
I'm so glad that Janek isn't…
Introductions.
Hiya everyone. My name is Chloe and I'm 16 years of age. Approxiametly five years ago my brother Cameron (pictured in the profile photo) passed away: he had Lesch Ny Han Syndrome. He had his teeth removed and he was a lovely, bright boy! I'm happy to join the site, for resources and support. My experience with my brother, influenced me to make the condition the subject of my disability unit for my GCSE course at school. I'll be explaining the affects on the individual, the family and carers. I…See More
Blog post by Chloe Tudor
Lisa Christopher's Mom replied to Berlingo's discussion 'Janek and DBS'
Dear Katja,
I am thinking about DBS for Cj. I am going to talk with a surgeon in the near future. I must say I am scared to do this for him, however if it can improve his quality of life I want to. His dystonia is off the charts and it is…
Janek and DBS
Dear all,I would like to let you know that last tuesday Janek had his big DBS surgery in Berlin. Everything went well so far. The first 2 days he had some pain but know he is on a pain drug level which makes him pain-free. The stiches heal very well and so far no infection. However, he is very nervous and refuses to eat something. But this is "normal" for him when he is ill and we hope that this gets better the next days. The stimulator has been turned on 2 days ago, but on a very low setting.…See More
Discussion posted by Berlingo
Ruch left a comment for Jim Sipich
Hi Jim
I am Ruch,s mother. She is soon going to be 12 years old and we are looking into buying her an ipad. You mentioned that your son's most important piece of equipment was his ipad. Could you please let us know exactly which ipad he uses.…
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Forum
Adaptations for children with Lesch-Nyhan syndrome in the classroom (materials) 11 Replies
I am doing a research project for my graduate program where I have to pretend to purchase materials and supplies for a child with Lesch-Nyhan syndrome in the classroom. If you have any advice or know…Continue
Started by Kelly M. Simmons in Suggestions. Last reply by Ilona 9 hours ago.
Janek and DBS 2 Replies
Dear all,I would like to let you know that last tuesday Janek had his big DBS surgery in Berlin. Everything went well so far. The first 2 days he had some pain but know he is on a pain drug level…Continue
Started by Berlingo in Announcements. Last reply by Chloe Tudor on Wednesday.
Using a walker 3 Replies
Hi everyone,I'm hoping to get your opinions on how important you think it is to have our kids use walkers? Grayson's school is pushing the walker and he hates it - screams, cries, sobs... their…Continue
Started by Allison Early in Caregiver Exchange. Last reply by Lisa Jan 16.
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