Huntington Disease Lighthouse Families

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HD testing protocol for counseling

Posted by Jayyaeg 
HD testing protocol for counseling
March 09, 2014 08:23PM
I just found out that my stepdaughter was tested 2 weeks ago in aother state and is waiting for results. I know how awful the waiting is but I don't understand why they tested her so quickly. I don't think she had any counseling or a waiting period. We only found out about her Dad's Huntington's in December and didn't tell his kids until about a month ago.
Are there places that test without appropriate counseling?
I am so worried for her. I know she wants like anyone would to be told she is negative and that her small child is not at risk. What if she is positive? She also just moved and is going through a divorce so she is certainly very emotionally fragile right now.
We have not been on good terms since her dad and I divorced. Part of me wants to reach out and comfort her, part of me says I have my hand's full with caring for her dad and our 3 teenagers. We did send her, her brother and her mother information from HDSA. I just hope someone is helping her through this.
Re: HD testing protocol for counseling
March 09, 2014 09:13PM
Actually no counseling is required for HD testing. It is optional. Any doctor can order the test without requiring any counseling. My daughter never went through counseling and I know very many people on this board who didn't either. On her first visit to the neurologist the test was ordered and the next week someone came to our house and drew the blood, We had the results in a few weeks.
Re: HD testing protocol for counseling
March 10, 2014 10:25AM
I would hope she has some support during this time. If you do not feel she would be receptive to speaking to you, perhaps reaching out to another family member nearby. Encourage her to try to reach out to the HD community where she has just moved to. Local HDSA affiliates may have a social worker who can talk to her or be able to help her find other families. Drop her a note to let you know you are thinking of her.

Especially given that she has had so many other stressors at this time, I agree that she needs support right now.

Patty C
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