HI everyone.
I am a very sad mom. My 16 yr. old son may have HD. His dad is 46 and in end stage. I never thought one of my children would have symptoms so early. No one ever mentioned JHD. I notice when my son walks his walk is rigid, and he stumps when he walks. I notice that he has twitches, he cannot sit completely still for 5 minutes. I notice he puts his ring finger up into his palm when all other fingers are straigt. He only does this with his hand sometimes. He was an honor roll student and now struggles in school. He makes a grunt noise sometimes when he eats or is working on his bike etc. I don't tell my son of the things I see. I am too heartbroken, and fearful of his reaction to learn he may have HD. My son is being evaluated at an HD clinic next week. He is not aware of this appointment. I guess I want him to be happy as long as he can be. I dont want him to have worries. I want to protect him. Yet I cry because I already feel the sadness. I am going to tell him I scheduled a appt. to have him seen by a neurologist because I am concerned about his memory. The neurologist will really be evaluating my son for HD. I want a blood test done, but they say they do not do a blood test under 18 unless they are certain of the diagnosis with teh exam. Yet I need answers to what I think I see. The clinic told me that if they suspect HD that they will inform my son. I personally cant bring myself to tell my son what I think. It saddens me to even think about it. I just want my son to be happy. He wants to be a professional motorcross rider. I want all of his dreams to come true. I don't want God to take my son. My son never had a girlfriend, never drove a car. I realize there are many parents out there who have gone through JHD, and I dont know yet how you find strength. I don't know how you handle it emotionally. HOw do you make this into something positive. What do you say to your child when he/she is told they have JHD? I don't know anything. I just know I feel sad.

There's not very much that's positive about JHD except the amazing strength and courage that is shown by so many who have been touched by it. I'm so sorry that your family has been visited by this dragon. We're here to help. Our thoughts and best wishes are with you your son and the rest of your family.

Steve

I'm not in your position, so I guess I can't really advise you but I did want to welcome you here. I have friends in your situation and it is a heartbreaker and one that I hope I am never in myself. Can you tell us what state you are in? Have you ever heard of the JHDcaregivers group? JHDCargivers@yahoogroups.com
This group may be helpful to you.. it's strictly for parents of Jhd's you have to sign up and be approved. I hope this can help you.. it's full of good advice and more stories like yours. I'm sure others will jump in here also to talk to you. Pat

We have 3 at risk son's and my heart hurts for you...everyday i worry about my own and feel for all who are going through the same...My Husband is 47 and in the middle stages of HD....i will be thinking of you and your son...Nila

I just wanted to say how very sorry I am that you and your family are going through this. You may find some strength and support from connecting with those who are going through what you are - like the support group that Pat recommended... I have 2 at-risk children (5 & 8) - it is very scary. Good luck...

I understand Cbreeze and can completely sympathise with you.My son had jhd.The support group that Pat mentioned is great and will help you a lot.If you would like me to answer any questions you can write to me in a p.m or e-mail me at gordinaman@yahoo.co.uk,I would be happy to answer any questions that you would like to ask.This site is also full of great support and a wealth of information,the people here are amazing.Take good care.Gordon

Welcome.

This is a very difficult time for you. Your heart must be breaking.You will be in my thoughts and prayers.
Paula

I'm so sorry you are going through this. I really hope you are wrong about the diagnosis. But if not, then I hope you and your son and your whole family can handle this with as much grace as possible. Sounds like you are being wise and sensitive in your approach this far.

(((((HUGS))))))



Edited 1 time(s). Last edit at 04/30/2010 07:35AM by smiling sara.

My 17 year old daughter has JHD.I understand your fears and pain so well.I grieved for the daughter who I will never have.Feel free to PM anytime and I'll give you my email address.

I'm so sorry you're going through this. I also have a son at risk and this is my greatest fear. I think it sounds as if you're following the best course of action. Please get involved with support...I don't think any person should go through something like this alone. We are all thinking of you.

It is obvious something is up. Don't let them get away with testing for everything under the sun. HD is in the family, and it's stupid to wait too long to look at it. It's far to taxing on him and you to test for things that are a 2 % chance when something else is a 50% chance of being right.

No matter what might be wrong with him, whether it is jHD or otherwise, if it is serious, you will get your feet underneath you. Today you are projecting a whole lifetime for him and you. But that's not how it will go no matter what you imagine. And it won't be about what he doesn't get. It will be about what you can give him... and that will be a lot. That's where jHD parents, and parents of any child with any illness get their strength... you won't be different. If there is one thing that is almost uniform about jHD and mothers, for all you may think he doesn't get... jHD kids get probably the most love of anyone. Again, you won't be any different.

You aren't reacting any differently than I or anyone else would with the unknown. There is one thing that is known, it's pretty obvious, is that you are a loving mother. And no matter what... even if all this is correctable and he's fine in the long run, you and he can both bank on that. So hang tough for now... see what's up. And give yourself proper credit that come what may, you are a good mother, and will deal with things as they come.

My mother-in-law was in a very similar position as you when my husband and I began dating. My brother-in-law began showing symptoms around the same age according to my husband, I met him when I was 18, he was 20, and it was very obvious something was going on. He worked for a brief time and went to college, he too is also very bright. He never had a girlfriend or drove either and for awhile the family tried to push him into these things which only brought more anxiety on him. It wasn't until 3 years ago that my husband finally intervened and he and his mother had a long overdue conversation with my brother-in-law. He was upset at first but by that time it was so obvious he didn't need the blood test to get benefits.

Before he received the diagnosis my mother-in-law struggled to support both of them and he never had money to do things he enjoyed. Since then it seems he has a better quality of life because he can now buy video games and do things he wants to.

I guess my point is I understand some of what your going through and I feel it's good your addressing this now.

Hi , welcome to the forum . You are certainly in a very challenging situation . I wonder if the health care professionals you are relying on , will put in place someone for your son to express his anxieties to , if he does have HD or any other ailment . The teenage years are a roller-coaster ride for many teenagers already . So I might ask your health care professionals , what help they would have to offer your dear son , if it is HD ? Anyways all my best , to you and your family . db

oh gosh cbreeze im so sorry for what your going through. I really hope if anything finding out and getting support from everyone here helps a little. JHD is so heartbreaking...but from the stories ive read here and from the one little boy Ive met, Bailey, they are also so incredibly inspiring and courageous. I hope you both find the strength to face next week and take the next step in receiving the help you need. I can only imagine what your going through...Im glad you have found this forum.

Michelle

I've replied to your PM Cbreeze xx

OH FYI... speaking of video games, a friends JHD son has been playing war games, I'm not sure specifically which ones.. but has even improved and not progressed and along with suppliments give credit to the video game as it keeps his brain so active! Just thought I'd pass this on.

Command and Conquer is the best. Get the "first Decade". Awesome stratagey game.

Friday is Craig's appointment. My anxienty seems unbearable. When I am at work or at home, it is like I dont even know what I am thinking. Craig doesnt know about his appointment. I am gonna tell him on Wedn. that I made him a doctor appointment because I am concerned about his grades and memory. Friday may be the day that my son's life changes, and I just have sadness and such high anxiety. I will post Friday night to let all of you know what happens at the appointment. Being seen in Columbia SC HD research . It is at the University of SC neuro/psychiatry. Not sure what all they will do. Just very nervous, and trying to keep myself busy.