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Lesch-Nyhan Disease support group

Hi , my name is Tara , my son Riley is 17 . We saw a new doctor today ,he hinted that Riley is at the age of regression.I would like to know if this really happens .Our genetisis also sad around 17-18 this would happen .Any info would help . Thank You , Tara Finn

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Hi Tara
We were given similar information about regression . But Bearing in mind that everyone is an individual, our son has continued to mature, develop and learn - he is now 23. He is working part time for a disabled children advocacy group doing training. So much more than we would ever have imagined him doing.
Anything is possible!

Thank you for the encouragement . We have a lot going on . Rileys hip is starting to rub his pelvic bone , and the scoliosis is getting to the point of deforming his ribs .The concern is eventually it will crush his organs if not repaired and it is a major surgery .The doctor said one of the worst . Thank You Tara Finn

Hi Tara

Callum is 18½. He is perhaps not as mature as many of his able bodied peers but he continues to make progress. His group of drinking buddies are in their early twenties and he has been completely accepted into the group. In terms of his education, I think he is actually doing better in this area because his learning is focused because he wants to learn how to run his own business. He has a business idea (off road quad biking for disabled people) which he is working towards when he leaves college.

Regards,

Lorna

hi tara my son Royston is now 34yrs old, i'm not sure if he is one of the oldest with LNS, he had his teeth removed when he was 11yrs and has been fine throughout the years, he has some behaviour problems (swearing) ! but he's a lovely young man. i was also told that he would regress at 17yrs or so but i suppose everyone is different.He grew into a man, his voice is deep, he is big and eats everything ! also he went through puberty and is quite hairy too !. As he has got older his muscles have weakened so he does not hit out as much as he used to and our doctor has said that he is deteriorating. I just live and enjoy everyday that i spend with him because we don't really know whats around the corner. Best wishes to you and Riley, julie x

My daughter, Rasheedah, is 34 years old. I am not sure what your doctor meant by "regression". Rasheedah is a very sociable young woman who enjoys hanging out with her family and companions. We go out to the movies almost every week-end and out to lunch or dinner several times a month even though she prefers not to eat in restaurants, too much. She does not like people staring at her. She takes several medications for anxiety and depression (she is usually on the lowest dose required for results) and only regrets never learning to read because she said the behaviors distracted her too much. She has an I-phone and she always reaching out to
"normal" people on dating sites because she wants to make "non-disabled" friends. We are currently back to making inquiries about DBS surgery, which she wants, very badly.

Hi

I was very interested to hear that Rasheedah can not read. My son, Callum, also has quite severe reading difficulties. He learned to read normally when he was young but as he has grown up, and his behaviours increased, his reading ability has not improved. He is certainly bright enough to be able to read and we have always been a bit mystified as to what the problem is. It would certainly explain this problem if his LNS was a contributing factor. I wonder if reading is a problem with other LNS sufferers?  

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