LND Net

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
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
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
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
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
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
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
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
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
on Saturday
lynette bacallao is now a member of LND Net
on Saturday
lesa0725 left a comment for Lisa
on Thursday
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
 

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Forum

Lisa Christopher's Mom

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

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 o…

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

Kurt Miller

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.

Lisa

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.

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