So many posts are related to children. Whether or not ot have them, naturally, IVF, adoption, etc. I get so angry when I read these. I want to apologize for my feelings, but the apology would be insincere. As we all have learned, HD is NOT just chorea, but in most cases the cognitive aspect is the more pronounced. And it affects each individual differently. I would like to see studies done that concern the Huntington's Disease individual and child abuse, also domestic abuse. Before you consider bringing children into the family, read some of the posts of adult children who grew up with a pHD parent.

Thank you for raising this topic.



Edited 1 time(s). Last edit at 04/07/2013 08:45AM by Concerned partner.

People with HD have varied symptoms and everyone experiences HD differently. Some are worse than others and some are better than
others. Many factors come into play as well such as cag count, age of onset, how a person takes care of themselves, vices they have or do not have, supplements taken, a person's economic factors and family situations/support, etc.

There are other illness that experience many of the same symptoms as a person with HD.

We now have many medications that were not available years ago that alleviate some of these symptoms. There is research ongoing
into many medications and procedures that will help even more with HD and a possible cure which will be awesome.

Many persons with HD have very full lives, are very productive and make a positive difference in this world. Many also have children
that are happy to be in this world and are enjoying their lives as well.

I do not agree with your feelings/opinion but I respect them as I would hope you respect mine as well.

I don't know that there is any right or wrong here but everyone has choices and they are free to make them.

Only God can judge people and their choices!

I echo Shar's response that the HD of today is not the HD of yester years. I cannot say what choice I would have made had we known that HD would be in my husband's future. We had 2 kids a year apart, and they were young ones when his behavior started to change dramatically. It wasn't until they were 6 and 7 that he received a diagnosis.

Even still, while they do not have a father to play baseball with them, or I have a partner to shuttle them in 2 different directions, they have a good life. They are not abused or neglected. Yes, they have had some frightening times in the past, but when I ask about it now, they don't linger on those memories. My husband was away from us for a year at a state hospital. It was the kids who asked to bring Daddy home.

Life is not what we expected, but I am proud to raise kids with good character and empathy for others. I do worry about the future, watching Daddy get worse. It think it is in how the well parent manages that time, which determines how the kids will adjust and adapt.

Life has no guarantees for a happy childhood, HD or not.

Take care,
PattyC

I think unilateral statements are inherently very dangerous. Especially about something so complex as parenthood.

I grew up with an pHD father. He has no symptoms at 65. At least any that a neurologist can detect...

I believe this IS the HD of yesteryear as I STILL know of people with HD, who have, stolen, raped, killed and molested children. I know people who refuse to take meds as they feel they don't need them. I know people who take meds and are still unstable. I know of a man who wanted to burn his house down with his wife and daughter in it. The only way we can say this isn't the HD of yesteryear is when there is a cure, and I mean a REAL, ACTUAL cure. given to our Phd's who will accept that they have HD and take the cure. I predict that won't always happen. I know this is harsh but it's all reality

This is a very complex topic. It is true that it's difficult to know what exactly each pHD's level of involvement will be. Many people do not become violent and thus as Patty C points out this can be a good example to teach children empathy if they are symptomatic. But on the other hand, violence is never ok no matter what the cause. The urge to procreate is very strong in most of us humans and it is true that sometimes people have to be sure they are not having children for "selfish" reasons. It would be good if everyone would think things through carefully before bringing a child into this world and that would hopefully help the chances the child will have a good life. But sometimes things just happen. We never knew HD was in the family until after our son was born. But I guess I can't judge those who decide to have children knowing HD is in the family. I have to say that if I had known, I personally would have decided to not have a child or would have had testing to make sure he was negative, but he is here and I love him and can't imagine life without him. My husband isn't really symptomatic, although he will sometimes loose his temper over things that I think are very non-consequential. So there may be some early signs. Do I worry? Yes. I pray that there will be no violence or irrational behavior. But as Shar pointed out there's no guarantee that wouldn't happen with a different illness. No one has a crystal ball to know the future. Everyone has different circumstances and many people are not affected with HD until later in life. I do think this post is good to help people know that there are different perpectives and to help people think about their choices.



Edited 1 time(s). Last edit at 04/08/2013 05:35PM by eve.

MrsPatWolf-I do not know any people with HD or of people with HD who have stolen, raped, killed or molested children. I am not saying
they are not out there but all the persons I know with HD would not do those things. Also, unfortunately, the majority of people who have
stolen, raped, killed or molested children do not have HD. I do not like to hang those items on people with HD only - I feel that is unfair,
not warranted and paints the wrong picture.
Also, unfortunately, many people who have committed henous crimes such as these either should be on medication, are not taking their
medications or are society misfits.

hi greeneyes where do you find where to read about children been brought up with hd in the family. I can see where you are coming from but you can have the test so you are not passing on the gene, we don,t have the choice of adoption or fostering, can,t get funding gor ivf if the partner with hd already has syptoms, so there isn,t alot of choice left. And if the lady is o.k and knows can bring a child up with hd partner and a good support network around them who has the right to say not to have a child, lots of single parents bring up a child on there own and they manage. The whole subject is very hard sometimes be easier not to have know and carried left on as normal. But none of us have a normal life when hd is there we all just try are best to cope and make the most of what life we have left together. Its very hard to no what is best only the couple can decide plus there is genitic couseling ect.. to help, all very hard Betty

We did not know it was in the family and had teenagers when it was diagnosed in their father.
The adjustment was extremely difficult and it continues to wrecked havoc on their lives.
Unless you live it right to the end having you family watch the suffering and know that there is a good possibility that they have a fifty percent chance of having it, I really don't think that you can understand. The behavior of a PHD can be down right bizarre and very hurtful. Yes medications can help tremendously, but the suffering of all stays forever. Not to mention how difficult life becomes when you can't get proper help with care and friends and family literally drop out of the scene not being able to handle all the conflict.
That being said then you must deal with the childrens positive diagnose and watch them slowly die after they develope bizarre symptoms.
We all think that we can make it better or ok but sometimes that does not happen.
I am not saying don't have children, but I am saying respect people who have been thru this and speak of the difficulities, what they have gone thru more than validates their opinions and I feel they probably don't need to hear the term that 'this is a personal choice'.
Don't mean to offend anyone and of course this does not happen in all circumstances, but it does happen and you really don't know whether it will happen to your loved one.

Betty - previous posts from children with pHD parents on this board. And within my own extended family, HD has presented not only as kind and gentle, but violently aggressive.

My oldest is a risk and he and his wife are thinking about children. If they can't find an anonymous test site, I'm not sure what they will do. I am beginning to think it may not be so irresponsible to go ahead. Keep in mind these are thoughts in process. Some friends and I had the conversation yesterday concerning these choices and decisions.

If you knew the child you carried had a genetic disease would it change your decision to have that child? One of my friends in the conversation is a professor of Nursin who was given that choice when their child was being carried. The other, a Mother of two fine daughters lost her Mother to Cystic Fibrosis last summer. Her youngest daughter tested positive for the gene. Her comment was "I cannot imagine my life without Evin's", she is healthy but if I had known, I don't think I could have changed things. My life without her would be void of many things.

Also, think for a moment about mental illness. There are many forms and most are treatable with the right medication. Many mentally ill persons go on to commit crimes of various types. This does not mean all of them do. Many also lead normal lives and you wouldn't know this unless told.

Mike

hey mikee-

I have been in a similar position to your son - let me know if you would like to PM, if he needs someone to talk to.

There are lots of options for him - IVF with pgd, CVS testing, or just proceeding forward unhindered (as you refer to above).

Hi Mikee,

My wife and I went through this not to long ago. My wife has Huntingtons. At the time when we decided to start a family she displayed no symptoms of Huntingtons and to ensure that Huntingtons wasn't carried over that we should look into IVF. Now to protect my wife from discovering whether she had Huntingtons, IVF centre cleverly didn't directly test for Huntingtons. The local IVF centre obtained my mother in laws DNA as the Huntingtons resided in her bloodline. IVF then screened the eggs they collected from my wife and if any of the eggs showed any signs of my mother in laws DNA it was discarded. We now have 3 kids all through IVF via PGD. Local IVF centre advised that the testing is 99.9% accurate.

Now my kids are older. I recently have been answering a lot of their questions about huntingtons. Even going to the point of dawing up a family tree as my kids wanted to know where it started from. My eldest whom is 10 years of age shocked me with a comment what if the doctors stuffed up on the testing. I assured her that it was highly unlikely but she responded she wants to be tested to be sure.

Since then she has been actively on the internet trying to find out more about the IVF-PGD procedure and what is the current status on finding a cure for her mother.

Thank you so much Noreaster and Robbyss. That's encouraging news. I will pass the information to him (probably his wife) and I'm sure they will be pleased at the information.

Noreaster I will probably send a PM. I want them to at least make an informed decision. I don't think they truly grasp the possible impact but on the other hand we must be positive.

I'm glad to hear about the healthy children and I will keep all of you in my thoughts and prayers.

Mike