My daughter is 27 years old and was diagnosed 4 years ago at age 23. She has a CAG of 52. I have been reading posts and people have stated that the higher the CAG the sooner it usually presents in the offspring?? She has two children. What is the theory behind this? Her brother is also at risk, but he has not yet been tested. He is a year older.

She has been getting worse lately.The most noticeable symptom is her weight loss. She is down to about 85 pounds. What can I do to increase her appetite?

She has also found it harder to make decisions, so I have decided that maybe I should start making them for her. Starting with insisting that she move in with us. If you ask her what she wants to do, she can't decide or if she does make a decision she will change her mind. Her chorea is becoming more noticeable, although she is still able to walk. She hasn't driven a car since a year before she was diagnosed. So she is dependent on everyone and her boyfriend is leaving her alone for very long periods of time (12 hours sometimes).

Do you notice your loved ones just staring off into space? She doesn't seem to care to watch TV or internet. Sometimes even her children can't snap her out of it.

I appreciate any response. Thanks so much!

I am so sorry that you and your daughter are going through this. 85 lbs is really low! Is she having difficulty swallowing or chewing? If that is the case, she might need to have high calorie liquids or smooth creamy things like pudding or yogurt that would be easier for her. Canned fruit is easy to swallow, too. HD patients eventually lose their sense of smell: perhaps she has lost her sense of smell and taste at this point, so food probably doesn't appeal much. I have read that sweet and bitter are the two taste sensations that survive the longest, and I know that my husband only eats sweet things now, so perhaps you can entice her with those.

She might have difficulty focusing on TV either because of the eye movements that HD patients have or because of increasing cognitive loss. Perhaps listening to music would be better or simple TV shows? She also might be pretty depressed; you might consider getting her on an anti-depressant, which could help.

Your daughter's CAG count is high and that is why her symptoms presented at an earlier age than most people's do ( in middle-age). However, the fact that your daughter's count is high does not change the likelihood of her children inheriting HD or necessarily mean that if they do, they will have a high CAG count. Like all children of an affected parent they have a 50% chance of inheriting it, but they could inherit a lower CAG count. Juvenile HD (symptoms before age 20) is quite rare.

I wish you all the best.

Actually 1 in 10 people have jhd, and yes, occasionally a cag repeat goes lower when passed to children, but more likely it stays the same or goes higher.