My son's grades continue to decline. He sniffs alot. He still grunts/hums with eating. His walk is stiff. He postures his hands. He blinks.. I just see so many things. But last year he refused to be tested. We went to the neurologist twice, I just didn't see the point of it. All they do is a mini neuro exam, and ask how he is doing. 15 minutes for a 200 mile round trip. I feel angry that there is nothing that can be done anyway, so why bother. I don't know what to think of HD. My son turned 17yrs old last month. He has no interest in working, no friends, no interest to drive. He just stays home, plays video games. or watches motorcross races on youtube. He has a dirt bike that he hasnt even rode in 2 yrs. Makes excuses that the bike needs this or that... The bike does'nt even have 100 miles on it. My friends say I should take him to the doctor to maybe try a antidepressant, but my son says he is not depressed.
His grades are dropping. Once A's just 3 years ago, now D's. I just don't know what to say or do. I cry on my way to work alot, just thinking that I am losing my son. What if my other son ends up with HD as well? I will have no one. I don't have any family. My boys have been my world.. I have nothing but them. I am losing my baby. What will my life be without them? My son refused to be tested last year to confirm what I feel 100% certain of. Since, I dont talk about HD. I dont want to upset him. I know it upset him when I took him to the neurologist last year, and he refused to be tested. I just feel he has to know what I see. Surely he has to know he has HD. We just dont talk about it. I don't mention how I feel etc.. because I don't want to scare him. I dont know what to do anymore. I see things progressing as far as movements and behavior, but I just treat him like there is nothing wrong with him. I don't know how to talk about it.My son has no friends, no one calls or viists, he doesn't hang out with anyone. He has no interest in driving, or getting a job like most kids his age. He has the mentality of a 10 year old. He is 17, but he does't act like any 17 year old that I have ever known. Do I just keep pretending nothing is wrong ? Do I keep what I think to myself? I cry so many times to myself, because I am losing my son. No one understands HD, and even when I called the family doctor who is on his medicaid card, the nurse said she never heard of HD.. well that just discourages me. Why should I take my son to a doctor to discuss with them possibly putting my son on an antidepressant etc,, and I have to educate them on HD. I need someone who understands HD, and its effects on my son and me. I live in fear that my oldest son who is 19 will also get HD. I will then have no one. I do my best to take care of my children, but I feel I am going to lose them. I know for certain that my 17 year old is positive just by all the characteristics he has. I feel guilt that my baby has HD.. I knew there was a chance for HD, but I never imagined it at age 16, I always thought it would not show til 40 or 50's. I never heard of JHD until my son had symptoms. I feel guilt they he will not be happy, and that he wont have the life his classmates will have. They are normal, and my son is not. I am slowly losing my son, and I don't know how to deal with it. I don't know what to say or do. I just keep going to work, and pretending all is well infront of everyone, but when I am alone, I just lose it. I am losing my own son, the son who was a beautiful baby, and good kid.. I am losing him and I don't know how to handle it.

I'm sorry this is so difficult for you. What I don't understand is: Why isn't the school system doing something to help him? As a parent, you can request a Child Study Team Evaluation. (Thery may call it something different in your state) It sure seems like there have been significant changes academically and that this change would show up in a Child Study Team evaluation. I would think there might be services for him within the school system. I know that in NJ, children with JHD have received special education services.

I also wonder if you could get some support for yourself from a therapist. Medicaid pays for therapy. It also pays for psychiatric visits if you can find a psyhiatrist who accepts Medicaid in your area (for medication for your son).

Even if the nurse at your doctor's office hasn't heard of HD, the doctor may still be able to prescribe an antidepressant. Unfortunately, we often have to educate people about Huntingtomn's disease.

He could also have some other Neurological Disorder. Is there a local Neruologist who accepts Medicaid?

Even though there is no cure for HD, if your son has HD, there is treatment for symptoms, such as deprerssion and apathy, so there are things that can be done to help him have a betetr quality of life.

cbreeze,
I also have 2 sons, both of whom have HD. Until just recently I was my youngest son's carer. He is 32 and has had symptoms since he was a child. I can feel the pain and anxiety in your words. I just want to let you know that you will still have your sons, if they are HD+ there are things that can be done to enhance their quality of life for a very long time. There will be many adjustments along this road, but you will make them, believe me you will.

Each individual must make the choice to be tested or not. Even without the blood test, a good neuro can diagnose HD. Is there a Center of Excellence closer to you than 200 miles? If not, it will be up to you to become an expert and educate the doctors that you will need.

I would suggest counseling for yourself, just to wrap your mind around what you think may be happening to your family. Once you feel stronger, you can be your sons advocate, and I can tell you for sure that they will need you to be that for them.

In the meantime, a lot of the Phd's here in this community have posted about supplements and lifestyle changes that have helped them delay their progression. You can provide that info to your son.

I would continue to be involved here, learn all that you can, read some of the posts here. There is much that you can do to help them and help yourself.

I hope that you can find some peace within yourself because I know the heartache that you are feeling as a mother facing this. Try to be strong when you can and give yourself the space you need to grieve. I also knew well before Tim tested that he had HD, but there is nothing to do other than meet it head on with everything you've got.

Take care,

Carla

CBreeze - it is so heartbreaking to read what you are going through. I don't know much about JHD but I know that there is so much hope right now regarding treatment for HD - things that will come in the future but also, as others have posted, things that can help right now. Fish oil, anti-depressants... it sounds like your son is resistant and I don't know how you can change that... but I am sure someone out there does... I agree with carla that you should get some counseling yourself - this is just too much to bear. You need to take care of yourself and talk to someone who can help you figure out how you can help yourself and your son. I have 2 young kids at risk (6 & 9) I can't even imagine the sadness and pain you are experiencing. you can't keep it all inside and pretend everything is alright...

Carla,

Thank you so much for posting as a parent of two young men with HD.

Paula

It is sad to watch my own son keep to himself all the time. HD is like the elephant in the room at my house that we all see, but really pretend we don't. I just feel my son has to see what I see. He avoids doing things so others don't see, that is how I know he knows what I know. My other son, and family members see what I see, but none of us say anything to my son. When I took him to the neurologist last year, it scared him. He refused the test, to me that says he doesn't want to know anything, and since that last visit to the neurologist I don't discuss it. But I know what I see, and just cant describe to anyone how much it breaks my heart. I cant describe the sadness. I have guilt for even having him. I never thought this would happen so young. I started college a few months ago, so I could get a better paying job to take care of him. It is like my brain is already thinking of what I need to do, but my heart breaks for him. My heart is not sad for me, it is cries for him.
I realize everyone says there are treatments on the way etc.. but I really have no hope in that. When my husband was diagnosed at 35 yres old due to symptoms he had ( same as my son), the neuorologist said a treatment may come for him, and was positive about a treatment being available for my sons by the time HD would effect them. Well,, I remember my husband looking at the neurologist and saying " BS ! My mom was told the same thing, and she died!" and here I am now with my the only two things I have in this world that make my life worth living, and I know I am losing my baby, and live every day in fear of it affecting my 19 yr old son as well. I have one, beside my sons. It is just us ! I have people I work with, one of which is a physician in physical/rehav medicine. I have no family to lean on. It has always been me and my boys. Everything I do , I do for them.

Paula, {{{hugs}}]

Hi,glad to see you back on here.

As you know my 18 year old daughter has JHD.It is a very difficult path to walk for them and ourselves.I would let your son know that if he needs to talk about anything the door is open,leave it at that for now anyway.He maybe scared of upsetting you also?The pain in your heart will not go away.I will not lie to you.However make the most now of the moments you do have.If he won't leave the house get out a board game,or even learn to play his computer games!!Anything to have that one and one.Today my daughter and I took a short walk to a local field with the dog.Just played ball with the dog and sat in the sun.She would sit in her room watching dvds all day if I let her.Some days I do as I get emotionally drained to,some days I push that bit harder and we have a day like today.Go with the flow.Try maybe to engage your older son to and go out for pizza or something.Just something nice to help that day tick by a bit easier.I understand why you would worry over your other son to.However you have enough going on today,so leave tomorrow where it is and cross that bridge if and when you come to it.He could be negative you know?PM any time ok xxxx

Thank you for your response. I just don't know if I should tell him why he does the things he does, or should I just leave it alone? I don't want him to be afraid. When we saw the neurologist last year, and I comfronted him with what I suspected, I could see how fearful he was. I cant do that to him again.I feel like it is my job to protect him. He is going to see his father next week in PA. He and my older son are staying a week with their dad who lives with their grandfather. My ex is not doing well. He can barely walk, he falls daily. I have a difficult time understanding his speech, and he can only eat certain foods due to choking. I wonder if my son can see he has the same traits his dad does? That their characteristics are the same? Everyone here sees what I see, but we don't say anything to my son. It bothers me that he has no interests in anything. hobbies or friends. He just does games, and watches tv. It could be a beautiful day, which we have had quite a few over the past month here in south carolina, but he doesnt even go out and enjoy himself. I offered him some small jobs to do for the doctor I work for, and he declines. I think it is because he doesn't want others to notice the things he does. Do I leave it alone, or do I confront him and take him to the doctor to get on an antidepressant. When I ask him if he is depressed he says no. I would like to try him on something, but if he tells the doctor he is fine, and that he does't want medicine, what am I to do? I am not sure what I am suppose to do. Do I just let him continue to be withdrawn. We all went out to eat twice over the past 2 weeks, each time, my son declined to go along, instead he wouldsay to bring him home something. I usually do, but lastnight I didn't, when he asked where his food was, I told him if he wanted something, that he needed to go along. I just don't know what I am to do or not to do.
How is your daughters behavior? Didnt you tell me before she graduated? I don't know if my son will graduate next year or not. He shows no effort with school. His last report card was 2 C's and the rest D's. I told the school I wanted them to do another cognitive test on him, and it has been a week, and I have not heard back yet on it. You would think they would do it without being told since the one he did last year was below average. The school doesnt' care about my son. They don't want to deal with it. I did have a meeting with all his teachers this year, The school principal and psychologist didnt even show up, or ever contact me. It is like they really don't care. I am at the point where I don't care if he attends school either. I always wanted to see him graduate, but now I ask myself why? What type of job can he get? He does't even want to work or drive? I feel negative and just ask myself "why bother?" I really am at a loss of what to do.

You have been given some very good advice by those who have responded to you.
One thing to remember is that you are still the adult - you are still the mother - he needs guidance. He is still a child with or without HD.
He may need to be taken to a dr for an antidepressant even he may not feel he needs one. Many who are depressed do not realize it.
If you are able to get counseling that would be good too - the counselor perhaps could help guide you on how to best help your son.
I wish more were knowledgable on HD, however, many more are becoming more so but we still have to help those who are not familiar with
it to learn about it. Certain medications can make such a difference if it is HD.
Good luck to you. You and your sons will get through this.

We are in the UK and at aged 16 kids do their G.C.S.E's over here.She did not manage school work so was not even put in for them,as she had declined too much mentally to do them at a standard high school.She is now in a special school till aged 19.There they have done a time table to fit around her and things she enjoys doing.She does baking,go for walks,shopping trips ect and palates to help keep her subtle.To be fair the school are great and she has a support teacher one on one.They have a physio and speech therapist on hand to.I think it is important for her to hold on to as much social activity as she can whilst she can.I understand you thinking 'why bother'? I was like that about her exams not long after she was officially diagnosed and didn't want to give her added pressure.But the academic stuff can be replaced with other stuff your son enjoys.Maybe now is the time to do a bit of digging and look into special needs schools yourself,for future reference.Or are there any disability groups in your area do outings?It is a big step to take and admit to I know,but for him it might be better in the long run,and for you to see him get out and about?
As for telling him what is going on,like you say he probably already suspects.Something will snap in him at some point and you need to prepare yourself for the fall out.I think the idea of counselling will be good for you.
Her behaviour is very up and down now.She can be happy one minuet then throwing things the next!!She can cut off her nose to spite her face aswell.However you carn't reason with someone who carn't reason any more.It's tough and there are times you have to walk away into another room,take 20 mins out they try again.We have to be strong for them,we are their mums and will be their first port of call to take anything out on.Have a cry,I do but I don't do this in front of her.It will not be an easy road,but do your ground work now so you both get the support you will need.xx

Carla, Cbreeze, Blondie
I cant even imagine what you are all going through. I cant get through your posts without crying. I pray every minute that this disease ends. I am just so sorry.

Cbreeze- I thought that if someone has symptoms and he is has no insight into his condition and he is not caring for himself (self neglect) that you could make his decisions. Somehow if you could get a doctor to listen and see what you see maybe they will get him some help. It sounds like he has apathy related to the memory issues with HD. He would sit all day if you let him. He just cant get going- he needs help to initiate activities. I dont know- I just wish I could help you.

Im sure it must be overwhelming and terrifying but if you could keep fighting hopefully someone will listen.
You are in my thoughts and prayers.

I am so sorry for all you are going through...my heart goes out to you...i have 3 sons at risk and it scares me to death...i don't want to loose them like i am losing my husband...i feel your pain...my heart cries for you...love and hugs...Nila

Thanks for all your advice. I have a doctor appointment scheduled this Thursday for my son. I also called a advocate for disabilities in my area, to help me out with the school, since the school drags their feet. I gave the school paperwork the beginning of the year that showed his cognitive test results, that they were below average, and that they were suppose to monitor my son. The school has done nothing! I am going to have an advocate who will help me get things done for my son. The school said they need something that says he has HD in order to do anything, but the neurologist said he didnt want to"label" him yet, said we could just deal with symptoms as they arise. The neurologist diagnosed him with a "cognitive disorder". The school received the report with that diagnosis, but I guess that hasnt been good enough, I think that since I now have a disabilites advocate, that things will now get done. I will post how the doctor visit goes this Thursday.
Thanks for all the support.

Glad to see you have someone to help fight your corner!!!

I don't know how things run in the states so don't really know how to advise with an official diagnosis of JHD or not at this stage.However go at your families pace and glad you have the ball rolling.xxx

Wow, I remember when you took him to the doc last time. Another appt this Thursday - that is great. I don't know what your goals are for this appt, but I have 2 suggestions:

1) I would definitely talk to the doc ahead of time or email and notify the receptionist that there's important info in the doc's inbox. Seems like "standard procedure" not to upset those with HD or suspected HD, but to give the doc a full accurate report about what IS going on.

2) Try to get him on an anti-depressant (you may have to include this request in your conversation with the doc ahead of time). You say your son is not depressed - maybe you've seen others with different-looking depression, but what you describe with apathy and not wanting to do things he'd otherwise enjoy - sounds like depression that I've seen in my Mom and heard others describing here as well. HD or not, this will probably make his life better. If it IS HD, certain types of antidepressants, SSRI's are also neuro-protective, AND it will make exploration of diagnosis easier when the time comes, whenever that is. Lots of caregivers (and others) take these too.

Hang in there. Sounds like you're a great mom, doing the best you can with one of the most difficult situations I can think of.



Edited 1 time(s). Last edit at 04/12/2011 08:29AM by smiling sara.

All sound like great steps to get some answers and a plan in place. You have gotten ball rolling and I am sure something good will come from it. Please post how it goes.

Good luck!