I am hoping to find more info/advice regarding having my 6 year old daughter tested for HD. Both her father and granddad had HD. My husband tested positive for HD and was on disability but passed away 2 years ago from cancer (a blessing in disguise some would say?!)

I am only bumping into walls in SA. I'm being told that it is international policy not have kids tested under the age of 18 as their consent is required. "Child rights" are even thrown againts my head!?!
I am more than willing to undergo whatever councelling is required, but the answer remains NO!.

Being a single and older parent (turning 46 this year), I believe I am mature enough to reveil the results to my daugther when she is ready. Who better than me to know the best time!! Who better than me to prepare her for the day she either wants the results or not? I will surely be long gone by the time she will start showing symptoms should she have inherited the decease, why can I not now have the info to ensure her future financial well being?

I would love to have any info, comments, feedback on your experience.

Kindest Regards

For one..your role as parent ends with your child's adulthood. There is no guarantee that you will handle the information correctly. There is nothing you can do with information beside know it... you can plan for or encourage any activity for a future of HD for your child should you find that necessary without knowing. There is no use whatsoever you have for knowing. She has no symptoms. Just to be able to tell your child yourself is not good enough. While her wellbeing is your responsibility in childhood and belongs to you..after that it belongs to her. She may never, as an adult, want you to know this information. She may test on her own and never tell you. That would be her right. You may not be the person in the future you see yourself as being. I had no idea when my kids were 6 months old if my kids would hate me eventually. Many people don't make their parents their best friend. Even on good terms with my kids... as I am... they may decide they don't want their problem to be my burden in my old age. That is their right as well. Quite frankly, some things are not a parents business. Especially concerning an adult child. If something is to remain a secret, it's best kept in her body and not in your head.

It is absolutely wrong, for you to take away her choice, to decide when she's an adult, if she wants to test.

Zandra

If you found out today that your daughter tested positive it would change you. You could never be the same parent that you are right now. Give your daughter the best possible childhood you can. Try to be the best parent you can. When the time comes and she decided whether or not to be tested be at her side and support her no matter what she decides. That's the best thing you can do for her.

I know not knowing is killing you. When my daughter, at age 25, was tested the waiting for the results was the worst time of my life. I thought I was going to explode from all the emotions, so I know what you are going through. But, there is no way she is not going to see the results in your face or the way you respond when she has a teenage "moment". You could end up telling her way before she is ready and not even realize it.

Zandra,

Just felt I really needed to respond....I'm at-risk, same as your daughter, and I would not have wanted my parent's to have tested me. It's my choice and right now I'm okay with not knowing, and when I get ready I will test. If she was having strong symptoms of JHD that would be a whole different story......however, I would like to find out before my boys have children, probably while their teenagers, because I do wish I would have known that my dad was positive. Just my thoughts on this subject.

Don't forget if you get your child tested, you are taking away their right to purchase life insurance in they are positive. If they say they have never been tested and an insurance company finds out they have been tested, all insurance would be declined. It is hard for you not to know. I completely understand.

My husband and I recently went thru PGD IVF and are now pregnant with twins boys due in January. We were asked to have them tested at 16 weeks to determine if they had the gene, however, we had to agree to abort if they were gene positive because otherwise we were taking away their right to decide. We were told not to test if we couldn't abort...that was our decision. In our opinion, we did everything we could do to keep them free of HD. As hard as it is not to know, it was a decision we had to make.

Good luck dealing with not knowing!

Sally,

Best of luck with your babies, having gone through the PGD process I trust that you will have HD free children. The hardest thing is you won't fully know until they are ready to test when they are grown up.

However, I would imagine with PGD it would be done very carefully and even though it will always be in the back of your mind I'm sure they will live a life free of HD.

All the best with the pregnancy, I hope it is a good one without sickness and you can enjoy feeling the movements going on inside you. Its a feeling you can't describe.


Debbie

I don't understand Sally, weren't the babies checked for hd before implantation? Why were you asked to have them tested at 16 weeks?

Barb,
Human error. The clinic wanted to make sure there were no mistakes when they tested them before transferring them back. Apparantly, the world's error rate is about 2-2.5%, however, not everyone (ourselves included) have the babies tested so the error rate is not accurate. The clinic we used said their rate was about 1%. I am very confident in their testing...I have to be.

Zandra, i'm wondering what you are thinking about our responses. I know we didnt tell you what you wanted to hear. But i'm wondering, can you see anything in what we've said that makes sense to you? Can you see that you have no right to this information? Your child will live at risk, and will continue too, until she is an adult, and then makes an adult decision about testing or not testing. It really has nothing to do with you. I know that's a hard thing to hear. What you can do for your daughter, is to hope for the best, but plan for the worst. Help her plan to have good schooling, and a good job, and for her to get insurance in place when she's a young adult. Have her live her life to the fullest, that is all anyone can do. But you do not have any kind of rights to this information, in any way shape or form. Can you understand that now?

I am concerned that we sound a little harsh to Zandra. I would want to know too. I have an adult daughter at risk and a stepdaughter and in fact I DO want to know. Like Zandra, I feel that I could help prepare them for a better future, but it's not my choice to make. I am sure she has the best motives as do I. But there really are conflicting rights here. More at risk individuals have decided not to do predictive testing than decide to test. As a result, the international guideline committee has come down on the side of no predictive testing for minors and on the side of letting adults make this important decision for themselves.

If you are a parent and new to this issue and wanting to know and doctors, social workers, and labs all act like you are morally wrong to ask for testing, well that's offensive too. It's a difficult issue that required a lot of thought and debate about medical ethics and it's unfair to expect people to understand it instantly or to be critical if they differ in their views. We didn't do this, but I recall when this issue was explained to me by a social worker I was told some horror stories (ex. wealthy grandpa wanted to know so he could disinherit HD positive children). That's the wrong way to talk to parents who only have good motives in mind.

That's why i was asking Marsha, if she understands why we have said these things, now that she's had time to think about it a little bit. Of course any parent would want to know, because they care. It's very hard as parents sometimes, to realize there's some areas in our children's lives, that we can't cross. And so i was wondering, if any of this makes any sense now that she's had a little time to think about some of these things.

Dear all, I have read your responses and did think about it a lot. I have also read and studied the thread on JHD. Herewith my background:

When my husband and I got married, we both came from previous marriages without having kids. I knew his father passed away and had HD and we openly discussed him having HD (his mother had breast cancer and also have passed away). He admitted (and I could see), that he had symptoms of HD but have decided that while it had no impact on his life at that stage, he will not have himself tested yet (He was still a very competitive endurance horse rider with his mild symptoms). The symptoms gradually worsened and affected his work. He was tested and put on ill health retirement at the age of 42.

When I fell pregnant with our daughter 2 years earlier, due to my age (39), my doctor advised me to have the baby tested for Downs. We discussed HD and at that stage I have decided not to have her tested for HD (I in any case would not have aborted should she have tested positive for HD, would you have? I have prayed and waited 15 years to have a child !!!, and after all, HD is an ?old age? illness?!.... so I wanted to believe).

Up to when my husband started having problems at work, the topic was discussed jokingly between us (i.e. oooppss, I think I have HD and not you! I have dropped 2 glasses today, or damn, I bumped into the wall, must be HD!?). We were more serious during the period while applying for disability benefits but the trend was always to be open and honest about HD.

I have joined the SA Support Group and it was great talking to other caregivers (although I did not see myself at that stage being a real caregiver). I knew I was ready and prepared to take care of him, once the symptoms becomes worse. At that stage he already had severe moods swings, serious movement problems (to that extent that a complete stranger once asked me if my husband had too much to drink 10:00 in the morning on the beach due to his staggering walking!) My focus in the support group was to make the general public more aware of HD to avoid these kinds of remarks in future.

The following 4 years, while him being at home, taking our daughter to cr?che, looking after his 13 Arab horses, our +/- 35 sheep and managing the rental of our chicken cages on our plot (he stopped farming with the chickens himself during that time due to HD affecting his financial decision making), we had the best time of our lives and I was also positive that we are on the right track to handle the illness as a family once it becomes worse. Small incidents like a minor car accident, was openly discussed around HD. (Was it not due to HD worsening?).

Then during the winter of 2007, he couldn?t get well from flu and after more than one series of antibiotics, our GP sent him for a biopsy on his lungs (Sept 2007). It was determined that he had melanoma cancer which already spread throw his lungs, liver and skeleton. He passed away Nov 2007. The worst thing for me to come to terms with was the fact that I was sooooooo prepared to look after him in the later stages of HD, why this now?!?!? Although caring for him with HD would most probably have been more difficult, I was more prepared for that than loosing my child?s father to cancer!!!!!!

I stopped going to the support group as HD was no longer part of my life ??.. so I wanted to believe?!?!? But now after 2 years, I have to admit to myself that it still is, as my little angel might also have it. As prepared as I was caring for my husband, who is going to look after her? I realize that his parents most probably felt the same, but did they? There was so little known about HD at that stage?

My plea to have the decision not to test before 18 are changed is mainly due to a whole generation which has changed since the 80ties when the illness was given a ?name? for the first time! I am being told to be ignorant. With internet and knowledge at our hands, how can I just be ignorant and carry on blissfully? If my husband was still alive, she would have gradually seen the deterioration in a HD person and would have read about it as a teenager herself on the internet and ask questions and would have made up her own mind being tested with my guidance.

If I do not have her tested now, it will always be in the back of my mind and how can anybody tell me to just carry on with life blissfully. Should she be tested positively now, it would be my duty to gradually introduce her to the illness for it not to be a shock to her when she is older. If not tested now, why would I ever mention the illness to her? (BUT at some stage I will just have to!!) Should she test positive now, I would make a very discrete effort to ensure that she is aware of the illness. NOT telling her that she was ever tested. NOT taking away her own right to ever decide for herself. I don?t even want the results on paper in my house.

On the matter of life insurance and financial planning, I have already determined that no policy would ever be declined due to HD. She will just pay higher premiums (a ruling in SA maybe due to AIDS discrimination). And her knowing her status does not have anything to do with the matter. In all the insurance application questionnaires, you are asked if you are aware of any inherited illnesses in your family. Should I leave her ignorant until that day? Should I leave her ignorant until she wants to get married or have children? How does anybody suggest I make her aware of HD during her lifetime other than gradually, making use of every opportunity while she is growing up and open communication routes herself.

I have already registered a trust in her name, but I can be much more specific to the trustees when knowing she has HD. Should I pass away now, the trustees are left with the difficult decision when and how to tell her that she might get HD. Why can I not now know and leave a letter to them on how I planned to let her gradually know of the illness? I will at no stage give the results to them either.

Is there any parent who would not give their child the perfect upbringing? (If at all possible?) My focus on her upbringing would definitely be emotional intelligence and maturity. This would assist her to face any difficult decisions in life. But the difference between knowing now or later, is the difference between carry on with live not ever thinking of HD (wouldn?t we all love that!!!!!) or to know and prepare as her as best possible for the news.
Am I unfair in wanting that for me and my child ???? , or am I the one who wants to just be in control?

The adult generation with young kids (will probably be at their mid 20 -30), who support my views in wanting to know, let me know. I just get the feeling that the ?NO? is currently so overwhelming that no one pursues the matter. Maybe the time is right to have the mindsets of the decision makers changed. Not to generalize, but to be open minded to listen to the parent?s reason for having the child tested. Put the parent through all the counseling. EI testing, IQ testing, personality testing, whatever. If this is being done during a job recruitment process to ensure you have the right fit to the job, why can it not be done to ensure that you have the right person who can handle the results of the test successfully towards the benefit of the child?

Kindest Regards from beautiful sunny SA !!!

I can certainly understand a parent's desire to know their child's HD status.

But in terms of future-planning - what difference does it really make whether you know that they are "at risk" - or actually gene-positive.

Either way, you have to "hope for the best & plan for the worst".

Get insurance. As much as possible. This will not be possible, once one is tested.

If one is tested for HD (or anything!) - it will go into a permanent medical record. And future insurers/employers can ask for (even demand) those records.

That's why it's considered an at-risk person's right to make the decision to test, themselves - after they've reached the age of consent. To make the decision to do so BEFORE that time, is quite frankly a violation of their rights.

I understand the desire to do that - but believe me, you will not be helping them, in terms of their future - you may instead be harming them.

jl

You need to put HD away and just have a wonderful life with your child. I did not tell my kids HD was in the family until I got it, and if I hadn't got it, they would never have needed to know. With cancer in the family I would be wary of stress and malnutrition.eat well. I am 60 with a CAG of 47 and I have managed 50 very active years without knowing my CAG, and some of my kids have chosen not to test

I think we will have to agree to disagree about this. This discussion has happened before and once in a blue moon a parent just really really wants to know what their child's status is. I guess there are some things in life that many would handle correctly but if not, the damage is too great when they don't. I am sure I could trust most people handling a hand grenade but people are not allowed to have them because of what happens when some people other people would get a hold of them.

There is no counseling set up for the rare person like you that needs to know right now. Counseling is for receiving the news.. not predictive of what you or any person would do with it in ten years or twenty years. A right for one person is a right for all people. Are you assuming all people would be good with this information and fair to the child if they knew?

The fact is this... there are all kinds of rules surrounding testing and treatment of HD. They were made from worst case scenarios and not best case. I think before you argue for this idea you would need to understand the reasons against more fully. You have brought this up to other parents of people with at-risk children. So far no one is in favor of this. No one wants the right, even if they won't use the right. They can say they want the right available here if they want it. Just like you have said you want it. There are other testing rules we split over, but not this one. You can't ask for something simply because you want it as the point of the argument . You have to understand why others feel differently and have points that apply to all other people in the same circumstances. This isn't just an HD issue.. it's a medical privacy issue. People are being granted more and more medical privacy because not having it is abused by people who get a hold of it. A husband has no right to a wife's medical records. My child is 19 and I have no right to his anymore. HD, cancer, or a cold... they are all his business now. We actually fought hard for as a group for the genetic non-discrimination act. We didn't want anyone to have knowledge of us besides who we choose to tell. An employer can judge how you preform... they can't draw blood to see what genes you have. And you can refuse to be tested in that way and go apply for another job. They can't ask if you have the HD gene, even if you know you do. So you are asking basically for that right to be gone for life for all people who were born to an HD parent.

Try to understand what the other side is and why. Remember this right would extend to people who are parents with the HD gene themselves. They may pass every counseling test if there were any. You can't take their right away to parent either. Later in life they may, through reasoning difficulties, abuse the knowledge. There are lots of pitfalls and most people see them. You need to take this off the emotional level and have well thought out arguments and be able to counter them with reason yourself. Saying you want to set up a trust based on her genes won't do it. That reasoning doesn't apply to all people, just you. You have to prove why this will improve your parenting of the child. because your responsibly ends and your rights end when a child is an adult. So how does your parenting improve in the next 12 yrs? What decisions concerning her health can you change knowing this health information that will change in the next 12 yrs? Because this about parental rights. We grant parental rights so a parent can parent well. How will this help your parenting? That's what you would have to argue for...and counter point the people who have points that say the information will cause harm. Then you have to extend from how it will help your parenting to how it would help all parents. If there is a treatment option of symptomatic kids... then the right to know will change. If knowing will prevent disease from happening or be life prolonging then there is solid reasons for testing that all parents can use for the children's benefit.

Don't feel this is personal against you. I am explaining this so you don't spend to much time about it and show you the rule is not personal against you. We all worry about our kids and their future... we all worry about how their adulthood will go. At the appropriate age you deem correct, you can tell your child the her at-risk status and groom her so at 18 the test is taken if you choose to do that. Those are your decisions. Just like teaching or not teaching a religion. At 18 the child can continue with church, or stop. My kids know their status. They can decide. I can tell them I will set up a trust.. a special one... if they tell me what's up if they test. If they want the trust bad enough they will test and tell me. If not then it's their life, even if I don't agree.



Edited 1 time(s). Last edit at 10/15/2009 07:43AM by Eric.

Zandra,

I do not think ANYONE here is suggesting that you be "ignorant" or to go "blissfully on with life".

I think that everyone agrees that you should gain every ounce of knowledge you can, about HD - and to do whatever you can to prepare yourself for it.

But do NOT test your child before the age of majority!

You're quite frankly WRONG that insurance companies cannot deny one coverage because of HD!

I'm living proof to the contrary! I have HD - and NO ONE will cover me. Believe me, I've inquired. Not even the insurance company I paid premiums to for nearly 40 years will cover me!

jl



Edited 1 time(s). Last edit at 10/15/2009 04:07PM by jl.

You don't need to know if your daughter is positive or negative to educate her on HD.

Explain what HD is and how it is passed down through the family. Explain she's got a 50% chance and that she can be tested for it. Inform her of what the testing process involves and that she should get insurance before testing. If she chooses to be tested you can then support her during that process and be there for her to talk to during this time.

If she does indeed turn out to be positive you can tell her how best to fight HD, that being healthy and exercising should help. Tell her treatments are being trialed right now that will help fight HD. Explain that CHDI are pumping money into HD research to beat this disease as quickly as we can. Explain that there is real hope that we will beat this disease.

Show her this site, let her know people are there to support her. Let your daughter know she's not alone in this. Point her in the direction of the HDSA's National Youth Alliance and how she can join a group just for young people affected by HD, a group that support and help eachother when they need it most.

There's so many things you can do to help your daughter, without taking her life choices away from her. Educate your daughter and make her strong enough to make the decisions herself.

Tc, Matt.

[www.hdyo.org]

Zandra,
Unfortuntately, when you decided to not test your child before she was born, you gave up your right to know. No one could have made you abort, you are right.
I do understand how you feel about wanting to know. However, can you reverse the roles for a bit? What if it was you in her situation? When you turn of age and decided to test, would you want your parents (or someone else who already had the information) to tell you they have kept it from you for so many years? I know you don't plan to tell her the results, however, What if she somehow found out that you knew the results and tried to pressure you into telling her before she was an adult? These are all things you need to consider.
Good luck if you decide to pursue your goal of being able to have her tested. Please just keep in mind....She will not qualify for any insurance if she has HD. JL is right. You will need to purchase her insurance based on what her future needs may be prior to having her tested.
Once again, good luck!

I understand that you would like to have your daughter tested, I have 3 at risk kids. I have decided not to think about it until I absolutely have to. Not knowing my kids status gives me hope that they may all be negative. I think that you would treat her differently if you knew. My goal is for my kids to live as normal a childhood as possible before having to deal with this very real possibility. Even the kids pediatrician pointed out that knowing would change everything. Would you encourage her to go to college if she were to test positive? Or want her to get married? My oldest graduates in the spring and is planning on going to college. I want him to experience everything it has to offer without this hanging over his head.

My goal is to make sure that my kids do as many things as possible. I encourage them to follow their dreams whatever that my be. I am much happier not knowing. There are many days I wish that I still didn't know that my husband has HD. Just my thoughts.