I'm a at-risk late 30's female with no symptoms so far. I have a question regarding JHD. My son is displaying tics, much like Tourette's and has since he was 3 years old and is now 9. He pretty much has all the symptoms, both motor and vocal and they wax and wane, just like text book tourette's. He doesn't have any of the "text" book symtoms of JHD. He's smart, straight A's, well-behaved, plays sports etc. However, I can't help but be concerned thinking "What if". So, I was wondering, anyone may answer, but especially parents that have experienced JHD, what were your child's symptoms? My childl's are not the "chorea" like tics, like my father has, and he may have one for awhile, then we hardly notice them, then he replaces the old tic with a new one. Thanks, guys!

And, I would like to add, that it is just crazy to me how we could possibly have 2 rare movement disorders in one family! I also want to mention that my cousin who is not at risk for HD also had these same kinds of tics my son displays, but was never diagnosed, he still has some, but much improved from when he was younger. My husband and I also had a few childhood tics as kids but outgrew them.



Edited 1 time(s). Last edit at 01/08/2013 10:06PM by rj.

I would not discount the possibility of having two neurological disorders in the same family. Some years ago, the grandchild of a forum member was having multiple neurological problems. With a parent who became symptomatic as a young adult, the child was tentatively diagnosed with JHD but the genetic test came back negative. It turned out to be another disorder (I don't think the final diagnosis was ever posted).

I am no JHD expert but decline in school performance seems to be one of the major symptoms to watch for. When a child becomes unable to do work that he had already learned to do, it's not a good sign. (I don't mean needing to brush up on knowledge and skills after summer vacation but serious decline that can't be remedied). With those straight A's I wouldn't suspect JHD.

Marsha- My daughter had straight A's right through college yet had JHD. In her case the first signs were multiple car accidents, clumsiness, deteriorating handwriting, and severe depression. She's now about 13-14 years into it and can still solve the Wheel of Fortune puzzles and answer the Jeopardy questions!

Thanks Marsha and Howard, he's only 9 but has had tics for 6 years, since the age of 3...pretty sure if he had JHD he would continue to decline in that time frame....he has a tic then they diminish for awhile, but do not go away, then may have a new/different one and they then seem frequent then diminish again...I've been keeping a journal. Doesn't affect school, has friends, says no one makes fun of him and all his teachers say they don't notice them or it's not a distraction in class.

My 17 yr old son is probably going to be tested soon and I wanted some guidence on how to tell his 15 yr old sister since she also has a risk?!?!?!

My story is similar to yours, I found out I was at risk in my mid thirties and my son, seven at the time had vocal and motor tics. He too would

trade one tic in for another.

I thought for sure I had HD. Turns out I'm negative and my son was diagnosed with Tourette's Syndrome at Children's Hospital in Vancouver.

Is it just me or does it seems that Tourette's follows HD around?

On a JHD note....My older sister in 51 and in full-time care. Her son is 8. He visited for three weeks in the summer and he was doing some

funky stuff. My son, 27 now, was around and we would be thinking Tourette's and then he would do something and we would shake our heads

and think, no, definately not. He had a hard time holding thoughts, he soiled himself three times while here, he zoned out quite a bit.

I jammed out of saying anything to his father...I figure he will know soon enough when the school calls.

It sounds to me like your son has TS but I'm no expert.

Colleen, thank you do much for your response!! Do you mind if I PM you? I have been researching TS and I'm pretty certain it is...even told Dr my concerns..at this point I don't think he needs any meds, but just have questions

lilbutrfly21 Wrote:
-------------------------------------------------------
> My 17 yr old son is probably going to be tested
> soon and I wanted some guidence on how to tell his
> 15 yr old sister since she also has a risk?!?!?!


Hi Lil.

I think your question got swallowed in the thread.

I feel that honesty is best, and giving kids the information they can handle at their age. 15 is a tough age for girls, even in a family without HD. Consider what you think she knows about HD. Does her affected parent still live with her?
Does she have a good relationship with your son, they might have already talked about it if he is ready to test.
Perhaps she knows some, but is not comfortable approaching you to discuss it, especially if you are the affected parent.

There are some good resources out there. Matty is on here (just1moreperson) and he and some comrades started HDYO.org , specifically to support young people affected by HD. Matty is based in England, but will surely lend some guidance.

Find a time when you can talk openly and calmy. Ask questions about what she knows, and does she wonder about how HD will affect her.

My kids were 6 and 7 when their dad was diagnosed. After a while, they started to ask questions, like how did daddy get HD? or are you going to get it too. I would answer he was born with it, but went no further, they weren't ready for it then. One day my son asked me what genetic means...answer the questions, and let them know that they can always ask more questions until they are satisfied.

two things I promised myself regarding teaching my kids about HD. I will never lie to them, and I will fully disclose their risk before they study genetics at school. HD is commonly used as an example, and I would never want any child to learn of their risk while at school.

Today, Zach 10 has figured out about his 50/50 risk. He said that is one gene from Daddy he really does not want to get. (he already got daddy's freckles) I respond I hope not too, but remember you have many years to live before that, and people are working every day toward a cure. He does not seem to be burdened by his knowledge, so I guess we did OK.

Good Luck.
Patty

rj-I'm happy to share what I know...please pm me

I am glad to read about how you told your son, Pattty, and glad to hear that he took it well. I will have to go thru that someday and I dread it. But I also want to be honest with my son. He just has a lot of issues and we're seeing child pych. soon. I pray that when the time comes this news doesn't push him over the edge.

Thank you so much Colleen for your willingness to share! I will pm you soon...we have been crazy busy!! I'm taking my dad who had HD to dr this week, so I could use prayers for strength....

Colleen, I have tried to pm you, but it says it's rejecting??? Can you try to pm me??



Edited 1 time(s). Last edit at 02/05/2013 09:18PM by rj.

I have been trying to pm you also but with no success. I wrote a note just now ..hope you got it.