I agree that this is enough! The school should have developed a plan of action and shared with all 3 families. Definitely time to take the matter in your own hands.. before something "violent" happens.....although personal self esteem and other issues have already occured. No child should be treated like this... and no institution should allow said treatment. I would definitelyby stacyw - Huntington's Disease Support Center
Ok, so I can tell you I've been there... it's awful...I know the fear of trying to keep everything afloat and maintain peace! For my husband, initially medication adjustment worked... our best result was use of Geodon. My husband would go through phases where the compulsive spending was minimized with adjust of the geodon and then would have a few months of reprieve... but unfortunately the reaby stacyw - Huntington's Disease Support Center
In the life of HD the outlook is not only about improvement... it is maintaining the range of motion... it is very important to participate in activities that will help phd's maintain use of function and falculties as long as possible... I'll be honest, most professionals were releuctant to work with my family members with HD.... either because they were afraid of what may happen if they pushed tby stacyw - Huntington's Disease Support Center
Yes this is great but beware "recognition" does not remedy the problems.. speaking from experience.. if there is a working parent... or if the child receives a stipend off the affected parents disability... SSI disability will not apply as the child has an "income" of their own given that the disability stipend from the parent is in the child's social security number.. and ifby stacyw - Huntington's Disease Support Center
We had the same problem with provigil and other medications. Turned out it was a matter of how the script is written. Given that the medications are not approved as effective treatment for HD the insurance does not cover. However, we were able to get it approved when the doctor wrote the script for the symptom as diagnosis... not huntington's as the diagnosis. example: depression, muscle rigby stacyw - Huntington's Disease Support Center
Question, how would the long term care- nursing home fee be covered? if through medicare or medicaid, a social worker from the program could come out and assess him with the doctor's "progress note". The doctor's note would clearly state what his symptoms and prognosis are therefore explaining the level of care he needs and will need as the disease continues to progress. From there thby stacyw - Huntington's Disease Support Center
Hi, Wanted to share my experience with everyone as I was really quite honored and quite honestly surprised at my ability to socialize. The local Elk's club chapter recongnized Jordan, (my daughter who passed in July at age 12 with JHD) as their poster child. They had a fundraising banquet last evening for special needs children to help fund quality of life activities and family supports.by stacyw - Huntington's Disease Support Center
Judy, so sorry for what you are going through... been there. My husband also in the NH refused treatment.. but luckily our COE actually goes to the nursing home so despite him refusing treatment... neurologist was still able to see him -despite him telling them "your fired". In regard to outings..I do not bring my husband home nor do I take him on outings. While this was fullby stacyw - Huntington's Disease Support Center
This is the worst--know that I have been where you are at and deeply feel for you! This is always going to be a matter of opinion. It all depends on the wishes of the patient with HD or family decisions. Did your father ever voice if he is open to having a feeding tube? If so, is he strong enough for the sugery? If not, how has he adjusted to eating since the incident...usually once this occuby stacyw - Huntington's Disease Support Center
Sorry I did not see this post earlier! Yes agree this diease is "CRAP". And what I am about to share with you based on knowledge from my experience makes you feel even crappier--forcing you to push emotions to the back, take great resolve in recognizing safety and health risks are first priority...and yes be ready to be the villian. Once someone is placed in the hospital, liabilty fby stacyw - Huntington's Disease Support Center
Hi, I am happy you found this site. You will find lots of comfort and support here.... Before I say what I feel is most important in these situations, I'd like to share with you how I became a member of this "select" group. My husband has HD and my daughter had the juvenille form. Like you, we were not initially told of HD and due to an estranged family relationship back to my husbaby stacyw - Huntington's Disease Support Center
yes people with HD can have OCD but just as important is... people with OCD do not have HDby stacyw - Huntington's Disease Support Center
Blondie, My daughter experienced similar "issues". turned out to be an obsessive behavior that was exacerbated by "new" sensory issues. For example, she would pick at her skin, finger nails, and clothing. Turned out the the slightest piece of lint or "dust" (to her) felt like she was sitting in crumbs Movement and environmental stimulation were the "best&by stacyw - Huntington's Disease Support Center
Hi everyone, Thanks for your support. I made it through the party. It was truly a beautiful tribute for Jordan. Along with the presentation of the determination award, several people shared loving & funny memories of Jordan and her personality. Then the farm owner announced that the memorial fund created in her memory will fund a new program, "Horses for Heroes". The program wby stacyw - Huntington's Disease Support Center
So sorry for the situation. Sometimes families make difficult things that much harder... I was not in your situation, but know the feelingn of predicting the amount of guilt you will carry for later... so in regard to testing, despite family not wanting to know their status...you have a right to know yours So my suggestion would be to inform them your feelings (as they did you) and tell them yby stacyw - Huntington's Disease Support Center
Absolutely, agree with Sarah... hd risk or not, it is best to get life insurance young as you lock in the lower rate and have a plan for future...by stacyw - Huntington's Disease Support Center
As many of you know, My daughter Jordan passed away in July as a result of JHD. One of her favorite things was Equine Therapy. This was great as her obsession for horses never felt like "work" of physical therapy. This Saturday I will attend the horse farm's annual Christmas party alone for the first time. For years Jordan and Ron, my husband with hd, won the determination award. Wby stacyw - Huntington's Disease Support Center
Yes a pediatric dentist works.... I was able to locate a dentist that had previous experience with special needs adults before becoming a pediatrics... Maybe calling a local nursing home, pediatric dentist, or reaching out to agencies that work with special needs to see who they use... ie easter seals, 21 plus, ARC, etc.by stacyw - Huntington's Disease Support Center
Deepest condolences in time of loss. What a beautiful post! How Inspiring you and many others are by sharing continued love, life and happiness throughout this horrid disease.by stacyw - Huntington's Disease Support Center
The love you have for your daughter shows... As a parent of a child who had JHD I completely understand the grief you have gone through as well as the anticipatory grief. Thank you for sharing your photos, smiles, & cherished memories with us. Stacyby stacyw - Huntington's Disease Support Center
Millie, Unfortunately, I do not have a direct answer for you regarding a pain medication that won't increase movements caused by HD---As you already know, it is very difficult to treat symptoms of HD and then when you have yet another catastrophic illness things become unchartered territory.. for that matter I couldn't even advise of other medications that wouldn't increase some symptom of HDby stacyw - Huntington's Disease Support Center
Hi Gene, My husband was simular to Barb and his psychotropic med changes seem to do the trick. My daughter on the other hand, had the issue for many many years both on her reuglar diet and later when diet changed. (just fyi, when diet changed to more liquids it actually got worse). When it became an ongoing problem daily mirilax helped, but what I need to add--- we used a 1/2 dose than whatby stacyw - Huntington's Disease Support Center
Yes Judy, that would be my input. If the anger is target to parents only I would definitely lean toward a teen thing not JHD.by stacyw - Huntington's Disease Support Center
Wow, I am usually not compelled to submitt subsequent posts but have found myself to do so with this. Bluegrassy, yes I completley understand that you would not have taken the "risk" of having a child with HD. I completely understand that this is something you could have prevented and would have done given the knowledge. I support an informed decision on anyones part. But realisby stacyw - Huntington's Disease Support Center
Really late reply, sorry, don't know how I missed the original post... but here is my thought JHD behavior problems as with HD can not be controlled(choices or selective expression), they are more on the impulsive response so if your daughter is presenting these behaviors in only select situations or social groups then I would agree with "teenage". I remember when my daughter was inby stacyw - Huntington's Disease Support Center
I agree with Fred, I currently have my husband covered under medicare, private insurance, and medicaid, respectively in order of primary. He is currently in NH and this is working well for us (for now). medicaid covers all the nursing facility costs. medicare is primary for any medical treatement outside the daily care of NH and then private insurance & medicaid cover the copays and deductby stacyw - Huntington's Disease Support Center
As everyone has said... this is your decision. I can only speak as a parent of a child with JHD. My daughter passed away in July at age 12. Yes the disease sucks, yes she experienced things that no child should experience... Personally I can only tell you for me.. my view... in my situation and my thoughts after sharing her life.....Her life was extremely important, precious, and all days hadby stacyw - Huntington's Disease Support Center
After reading these posts I feel the need to point out a few things. My intent is not to offend anyone but to stress that we are all here based on how HD impacts on our lives. With that said, bluegrassy, I can understand your frustration and anger at your MIL for witholding HD family status from you and feel she has placed your son in a situation that could have been prevented. As I replied iby stacyw - Huntington's Disease Support Center
Howard, I am sorry for your loss. The remarkable companionship from a canine reaches depths that humans just don't have the ability to share. My daughter and I experienced forms of abandonment from freinds and family durig the progression of her JHD. I have a 15 year old golden retriever. We are the only ones left to our household. He was here to welcome my daughter into the world and herby stacyw - Huntington's Disease Support Center
Home health aides can help with direct care. My husband was also mobile and able to dress himself. They can do laundry, light cleaning in the patients general area, cooking, shower, reminders, (eat, bathe brush teeth, etc & assistance where needed). It all depends on the individual aide you have. One of the aides we had was very rude. She insisted that she could not do many things becausby stacyw - Huntington's Disease Support Center