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

Tom Fuchs is now friends with Kurt Miller and Bene Williams

10 hours ago

Lisa Christopher's Mom replied to Lisa Christopher's Mom's discussion 'Have any of your doctors mentioned stem cell treatment for your kiddos?'

Hi Lisa, I replied to Dexter to google an article. Just scrool up. They injected the stem cells into the brain. They used to inject them in the bone marrow but found there was a barrier around the neck area so the cells could not reach the brain. I…

10 hours ago

Lisa left a comment for lesa0725

10 hours ago

Lisa replied to Lisa Christopher's Mom's discussion 'Have any of your doctors mentioned stem cell treatment for your kiddos?'

Before Konnor's LNS diagnosis we did umbilical cord stem cell treatments, we did see some improvements with his speech and strength. Of course with his new diagnosis the Dr's weren't able to explain how we say improvements... This is something they…

10 hours ago

Dexter replied to Lisa Christopher's Mom's discussion 'Have any of your doctors mentioned stem cell treatment for your kiddos?'

HI Lisa, I have gone through that article. Thanks for that. I have an appointment in a months time and will bring this to the doc's notice. I think its worth a try though with insurance not covering it it could turn out to be expensive. However if…

11 hours ago

Lisa Christopher's Mom replied to Lisa Christopher's Mom's discussion 'Have any of your doctors mentioned stem cell treatment for your kiddos?'

Hi Dexter, I found this article on another support group. http://www.SEN.org It is the second article down. Transplanted stemcells form proper brain connection. I believe this is what my doctor was telling me about. Lisa

14 hours ago

Dexter replied to Lisa Christopher's Mom's discussion 'Have any of your doctors mentioned stem cell treatment for your kiddos?'

Hi Lisa, I think one of the parents has done stem cell treatment for their child. However I am not too sure of the results. My son has DBS and I would think stem cell treatment would be a better option if it was fully understood / developed. Right…

23 hours ago

Lisa Christopher's Mom added a discussion

Have any of your doctors mentioned stem cell treatment for your kiddos?

Hi, I have an appt next week at Children's Boston. I spoke with my son's new doctor and he wants to go over a new stem cell procedure as well as DBS with another doctor. I was just wondering if any of your doctors have mentioned stem cell treatment…

yesterday

Kurt Miller replied to Kurt Miller's discussion 'Latest update on Kole and DBS'

Hi Lisa, tell the Docs to try to get the DBS approved targeting dystonia, since it is not an approved treatment for LNS.

on Sunday

lesa0725 replied to Kurt Miller's discussion 'Latest update on Kole and DBS'

Hi Kurt, I have been reading all about Kole and feel horrible. It sounds like what you are going through is what we went through in and out of the hospital every month last year and now just having to remove all of Ricky's teeth. We are now trying t…

on Saturday

lesa0725 and Alex Shifrin are now friends

on Saturday

lynette bacallao updated their profile

on Saturday

lynette bacallao is now a member of LND Net

Welcome Them!

on Saturday

lesa0725 left a comment for Lisa

on Thursday

Michelle replied to Lisa's discussion 'Behavioral Specialist...???'

Hey Lisa, We have seen a behavior specialist here and no it really did not help. I think we helped them more than they helped us.... if you are having a hard time with the behaviors they can show you more effective ways to deal with the behaviors b…

on Thursday

Lisa left a comment for lesa0725

on Wednesday

Welcome to LND Net!

LND Registry is now LND Net.

Forum

Have any of your doctors mentioned stem cell treatment for your kiddos? 5 Replies

Started by Lisa Christopher's Mom in Caregiver Exchange. Last reply by Lisa Christopher's Mom 10 hours ago.

Latest update on Kole and DBS 16 Replies

Hi all, First, I would like to apologize for being so negligent about visiting the site. Now for the update. As many of you know, my son Kole, who is now 7, had Deep Brain Stimulation surgery in 2…

Started by Kurt Miller in Caregiver Exchange. Last reply by Kurt Miller Feb 7.

Behavioral Specialist...??? 9 Replies

I hope all of you had a great holiday with your families! Konnor had a check up with the Nephrologist last week and afterwards she emailed me wanting to know if we wanted a referal to a behavioral sp…

Started by Lisa in Caregiver Exchange. Last reply by Michelle Feb 4.