I have posted on here a few times, but not lately.
My son is 16. He shows symptoms of HD, but doesn't want tested. Had cognitive testing which showed a decline. MRI ruled out a tumor to explain the decrease with cognitive impairment.
WEll. my son is in High school. Doesnt seem to have any friends, even though he a a great kid. He told me he doesnt eat lunch at school because he doesnt like the food.
What I think is that someone has made fun of him because he makes a humming noises whenhe eats, sometimes grunts, but usually it is humming. It is everytime when he eats. Is worse if he is nervous.
I asked him what he does during lunch, he says he doesnt like the food so he goes to the library. I asked if he has any friends, because he never talks of anyone, nor does he talk to anyone. He could only name one name when I asked who his friends were. When not in school he is home. Doesnt hang out with anyone. He has no desire to drive a car, or get a job. He says he is not depressed. He says he is fine.

I feel hurt to think that kids at school may be treating him badly because of symptoms I see and hear at home. When we saw the neurologist my son denied he had signs of HD. I think what I see is VERY obvious, but I don't draw attention to it??movements, noises, behavior, I never say anything. Does he see what he does, but is just in denial? I don't mention anything, but are kids at school saying things?
I am not sure what to do? I don't like my son to be withdrawn. I am just really feeling sad about this, and not sure what to do. I want him to be happy.

Nice to see you back.

Have you thought of contacting the school to see if they have picked up on anything?A chat with the class teacher might help you both understand what is going on when either of you is not there.
My daughter had serious bullying issues and was assaulted 3 times in one year,the last resulting in casualty.I stopped sending her to school and demanded a meeting with the head teacher (principle) I think you guys call it.She ended up having a teaching support assistant with her all the time.Until she moved to a special school.Now I can relax as all the kids have their own issues there and no bullying.
I know you don't want to scare your son.But he may need answers to now.xx

My heart goes out to you.

So sorry - nothing is harder than not being able to make things OK for your kid - or watching them suffer. Denial is incredibly powerful - but sometimes it can also be protective - would it help the situation if he had to face having hd right now? It is such a hard situation for all of you. You obviously love your son very much and see the good that is inside him. That is the most important thing - he'll get out of HS eventually and the bully's will be in the past but your love and support will always be a positive part of who he is...

I am so sorry you are going through this. Are you sure it is HD because it could be something else- like ADHD? I thought that usually if they have had symptoms for awhile something would show on an MRI? Not sure?

My son has problems with concentration, and has odd hand movements and sometimes eye movements but it is not HD but because I was at risk I had myself convinced it was. My other son has epilepsy and there again I convinced myself it was HD but it is not. (I tested negative).

Thinking of you.

Thanks.
Yes. Today I spoke with the principle and the school psychologist. The psychologist is going to tallk to him indirectly about lunch and school in general.
I just feel that kids may have said things to him about the humming. Or the way he carrys himself. Such as movements and walk is not the same as other boys his age.

I spoke with the school principle today and the psychologist. They are going to keep eye on things. psychologist is gonna speak to him about lunch and school indirectly. After the holidays may talk to him myself or consider speaking with a therapist who is aware of HD. I find that doctors and other professionals really not familiar with HD.

No. my son does not have ADHD. He doesn't have any problems with concentration. His cognitive test showed problems with memory and recall. I am very familiar with HD. I have been through this twice.
Sad that it is my son. Sad that kids are mean and just don't understand. I also am a nurse of 24 years. I actually did school nursing for a few years. I know exactly what ADHD, and ADD are. THere is a big difference with HD.

My husbands mother did certain things with HD, my husband does the same traits, and now my son as well. I mean with posturings and behavior.

My son is not aggressive or angry either. He is a good boy, and just very passive.

CBREEZE,

MOTHER TO MOTHER.... PROBABLY....

you know what you feel, and instinct is rarely wrong... kids may very well have pasted the 'wierd' tag on him.... know that, all us mothers know what your talking about.... its so devestating... ok lets not wallow...

WHATS A SOLUTION? difficult... how far out are you willing to go?
if you could home school him would you? hows his grades? could you move him to an alternative school? if he has no friends as you suspect, than you would not be taking him away from a social life, he has none...

OK... dumb question, but how far are you willing to go right? SO....
which one of your friends has a quiet, possibly nerdy if you like, solitary child? come on think... nothing wrong with you doing a HOOK-UP
for your child... setting up a situation for your son, is worth a try.

does he have any cousins or family members he's happy with?...does he have a hobby you can hook him up with? is there any adult he enjoys talking to?

OK.... DO YOU KNOW ANY KIDS THAT GOES TO HIS SCHOOL? friends of the family, kids in your church, neighbor? .... thing is, if kids knew he was possibly ill, they would be really suportive, its a different time, and kids are pretty hep to helping those who are disabled out, its cool these days...But, you cant bust him out like that, but if you had a young person you had faith in, you could just speak honestly, and say your son may be unwell, your not sure at this time, but could they look out for you, and let you know if he's doing ok.... THAT WAY YOU GET THE 411 ON HIS SITUATION, AND HOPEFULLY, THE CHILD YOU TALK TO, MIGHT DECIDE TO 'ADOPT HIM', KNOW WHAT I MEAN?

YOU WILL HAVE TO BE INVENTIVE, BUT THATS WHAT MOMS ARE... TALK TO YOUR FRIENDS OR CHURCH OR PEOPLE YOU RESPECT, MAKE SOMETHING HAPPEN... TRUST ME, YOUR CHILD IS LOVED, THERE IS A PERFECT SOLUTION WAITING FOR YOU TO FIND IT.

I have nothing good to add here but have tried and tried to come up with something. I really like skmf12's post- being proactive is the best thing you could possibly do for both yourself and your son. I wish I had some definitive answers or knew the right thing to say to make it better for you both.

As awful as it is,you know your child and you know this disease.I don't doubt you.You need someone to tell you your not going mad or being an over paranoid mum!!I knew when my daughter was just 9, she had started with cognitive and memory problems as you know from my PM her story.It truly is hard to come to terms with and accept,it's heart wrenching.As mothers though we have no choice but to pick ourselves up and carry on,for their sakes.My only advice now is the sooner it is diagnosed the more support you have,because you are going to need it more than ever.PM me anytime x

Hi,

I tend to agree with Blondie, if you are worried yourself about your son then make an appointment with a GP and get to a specialist who can take a look.

You say not many Drs around you know about HD, I find this incredible, it affects so many people yet no Drs know anything about it? There must be a Neurologist who deals with movement disorders who knows something!!

A Neurologist can sometimes give you an idea of what they think, if they are worried then they can arrange a blood test unless you are in the USA where they seem to do things differently.

If he had an MRI and it didn't show up anything I would find it strange if he has symptoms as that is how my son was diagnosed. A CT scan showed nothing but the MRI gave us the horrid answer.

Hope you get some answers, also hope they are good answers that can be helped and give you some peace of mind.

All the very best for you and your son.


Buddybird

My daughter had her first MRI at 11 at that showed nothing,despite symptoms starting.Her second MRI at 15 showed JHD though.

I have to say your description of your son reminds me a lot of myself in high school. I was incredibly socially awkward, and skipped lunch for three out of four years. I thought lunch was an incredible waste of time and couldn't stand the noise and energy of the lunch room. So I too spent a lot of time in the library or took extra electives when allowed. I had no interest in getting a job until i was in college and sick of ramen. And I didn't bother learning how to drive a car until i was well out of college.And I still get strange looks when I whistle, sing, hum, talk to myself in public. I rarely notice until I notice someone else's reaction (and in my case this is a trait I picked up from my non hd parent).

I am in no way saying that you shouldn't be concerned for your son. However if your son says he isn't depressed I wouldn't push on subjects that make him feel inadequate or different. It is hard being a teenager. Now is the perfect time to focus in on what he is good at and the things he enjoys. Support his hobbies and encourage him to get involved in an activity or group outside of school. Volunteering for a community organization or at an animal shelter could also be good. Sometimes the best way to make you feel better about yourself is to help someone else.