Hi everyone.
I am curious about common symptoms of HD. As many of you know I suspect my son has JHD. He is 16. He refused to be tested when we went to the neurologist. I decided that since he doesnt want to be tested that he just doesn't want to deal with it right now, and I just want him to be happy. I don't want him worrying etc. Anyway,, when I see and hear things I don't say anything to my son. I wanted to know though if anyone here notices humming/grunting noises with HD? or Constant sniffing. My son has been doing these things for a year, but now it is getting to be all the time. I ask if he feels he has a cold and he says no. I don't think he realizes that he sniffs all the time. I also dont think he knows he makes a grunting or humming noise while he is doing things. I spoke to my xfather in law who cares for my ex husband, and he says my ex does the grunting thing all the time, but says he doesn't do the sniffing. I also notice my son frequently blinks his eyes. I dont say anything or bring attention to it, but I just wonder if this is common with HD ? The cognitive testing he had done showed he had problems with memory and recall. The neurologist ordered a brain MRI and naturally it was normal. Said he ordered it to rule out a brain tumor. Said cognitive changes are common in HD, but needed to rule out other cause since my son refused the blood test for hD. Anyway,, does anyone here notice or have frequent sniffing?

How long has he been having these symptoms? childhood tics are pretty common. I'm curious to know if he has any other symptoms with it. were the doctors willing to test him? I know it's controversial before the age of 18. BUT if he did have serious symptoms then I think that would give them better reason. I've been speaking go a neurologist about the pros and cons of testing, and he mentioned his view is to find out if I were positive and then make the decision to have my kids tested. I was under the impression that they don't just test kids unless they have symptoms, because they want them to have a choice in making an informed decison.

Could be. Grunting and puckering is a sign of a lot of neurological disorders. Sniffing, rapid and pronounced blinking are also signs.

I don't believe that you can't get him tested. I mean, there has to be some way to do it. I can't believe that he can refuse.

Mine is 16 and as far as I'm concerned, there isn't anything he can refuse to do if I want it done. Never has been, and won't be until he's 18, and then maybe some more.

In SC a child is emancipated from his parent at the age of 16. I took him to the neurologist, they said it is up to him not me to test. My son refused to be tested. The neurologist could have done the test the same day, but my son said he didn't want it, and from that I had no say. They told him "he" has the "power: when it comes to his medical care. In SC he has his own rights at 16. It doesnt matter what I say.
I don't mind that he doesnt want tested. The neurologist agreed with my son. The neurolg said " why test? there is NO cure for this" If he tests and it it positive that he would be "labeled". He would have problems getting a job and health and life insurance. Why do that when there in no cure for this? Every 3 months we travel 100 miles one way to the nearest clinic that deals with HD. They do a quick neuro exam and say they will see him again in 3 months. I personally do not want to keep bringing the words HD to my son. He made it clear he doesnt want tested. I as his mom just want him to be like other 16 year olds. Even though his behavior and movements are not like other 16 year olds. When I see the walk, or the tucking his thumb in his hand when he walks, or the body movements, the grunting, sniffing etc.. I say not one word. I just want him to be happy. I just wondered if others have the frequent sniffing and grunting and blinking?

I think you are right not to push him to test - but maybe he would be open to taking some supplements that are good for the general population and particularly good for him if he has HD. Fish oil, blueberry, multivitamin - even the creatine. I don't know much about JHD but these things are very worthwhile for HD so maybe the same is true for JHD. Very tough and painful position you are in! Good luck!

Hi Cbreeze- and so sorry for the rough times. I hope I'm not out of line when I say that to emancipate a child at 16 is straight out ridiculous. . you're still supporting them then in most ways if not all. That is neither here nor there when it comes to the testing process I guess - just a thought. Anyway, my mother, for years, always was sniffling and blowing her nose, despite the fact that nothing much ever came out. Why I never invested in some good Kleenex brand stock. . .she went through boxes and boxes of it. I never understood that and then recently wondered if it was related. She also grimaced alot in the early years. However, since her cardiac arrest and subsequent decline, the sniffling and most of the grimacing has now disappeared. In fact, when she's lying down (standing up is a whole different story), she appears just like anyone else lying down. Anyway, my thoughts are with you and I'm wishing you lots of strength and luck during this time.

I'm sorry to hear that where you live, 16 is legal adult age. Because, if he would get diagnosed, he could receive benefits and medical help. His neuro may be right that there is no cure, but he is wrong that there is nothing to help. You have a child that has symptoms and needs a diagnosis, and the neuro himself talked him out of testing, it's just not right in my way of thinking. Having jhd is not going to "label" him, into not getting a job and insurance, he already is not going to be able to do these things. It's important that he knows what he has, can hold his head high and proud, and be able to get good medical care and benefits.

rj, you are correct, children can't be tested if they're not symptomatic, but if they are symptomatic, then they need to be tested.



Edited 1 time(s). Last edit at 09/12/2010 02:04AM by Barb.

My pHD FIL made little humming noises and sniffled a lot (he had late onset...diagnosed in his 70's but had it awhile before that). It would drive my MIL crazy when they were in church. But that doesn't mean your son has it based on that. He could have some other neuro problem or he could just have post nasal drip. I really wish you could get him tested. My son has had some issues too (not necessarily that I think it's HD but it still makes me wonder) and I know that you want to help in every way you can as a mother. I think Barb has hit the nail on the head that when there are symtoms then is the time to investigate/test. This doesn't seem right that you can't get him help...actually it is YOU that is being affected too and that isn't fair. I can tell that your mind is wondering and not at peace. I'm sorry and I hope you can get some answers.



Edited 1 time(s). Last edit at 09/12/2010 08:28AM by eve.

Interesting that you said your son tucks his thumb into his hand when walking. My Phd does this also and holds that hand postion while he holds his arm across the front of his chest. I've never heard anyone mention that position before.

Very sorry about your difficulty with your son. It must be very difficult as a mother to not be able to have an acurate answer. Seems this would wear at you each day. I guess with your son being 16 YOA you just have to patient with many things regarding him. He may change his mind soon about the testing. I'd just be open with him about his decision and let him talk openly and he may confide in his worries about testing with you. Hard to get any 16 YoA boy to open up about much!



Edited 1 time(s). Last edit at 09/12/2010 08:37AM by LizzieAnn.

Aren't the humming, sniffing, tics etc. more commonly symptoms of Tourette?

Make friends with another neurologist and set up an appointment and talk to them independently. Write everything down and present it to him in written format. You may not need a diagnose at this time but you do need someone who will be there to help you if your son starts have problems in school and work and with friends, alcohol etc.
I can sympathize with your son and with you but let's face it, if he does have it, the next few years are going to be tough and you need some support for this battle.
Let him live his life for now but plan for this possibly being on the table. Make sure he gets enough work experience so he will qualify for medicare. Get some life insurance in place for him. What age was his father when symptoms appeared? Since the doctor has not diagnosed it you can still get these things for him.
In speaking with the neurologist emphasize that you are not wishing to break confidentiality but present a situation which emphases the possibility for future need for support.

My son has had the sniffing, snorting, humming and other tics for quite some time. Also when he was a child/teen, he had the rapid eye blinking which he does not have now. (seemed to correspond to stressful situations or lying)

His CAG is 51 and I've always thought he had JHD, he's now 31 and much farther progressed that my older son.

Best of luck in your search for answers.

Take care,

Carla

My husband made grunting noises for a long time. Doesn't seem to do it much anymore, but he does talk to himself all the time and repeats the same words over and over and over.....

Sorry to say my daughter blinked an awful lot and did go through a sniffing stage prior to being diagnosed with JHD.She also made some very strange throat noises for about a month in the earlier years but these disappeared.First MRI also came back ok aged 11 but symptoms still appeared.Second MRI aged 15 confirmed JHD.