For those of you who don't know me my 17 year old daughter has JHD.I have posted her toilet troubles here before with the persistent need to go and the length of time she can sit on the loo.All day if you let her now.She was prescribed Ditropan for an irritable bladder but to no affect and has been tested for infections.She was put on anti depressants,mirtazpine 30mg,at night to help relax her and to get her off the toilet easier to sleep.Recently,the last couple of weeks,I carn't get her off the loo usually before 11pm without her tantrums and aggression.When she does go to bed sometimes she screams for the toilet or she will wake up yelling in the early hours for the toilet and wakes up very early in the morning for the toilet again.I am trying very hard to keep day and night normal for her.She did have a commode in her bedroom but she would get off the loo and go straight to that.I took it out of her room and for awhile it did get better.She would sit on it all night if I put it back in the room.My husband works and my younger daughter has school and are both exhausted,me to but I gave up work a year ago.I guess what I am asking for is what is ok for people with JHD/HD to help them sleep?I have read that some types of tablets/medicines are unsuitable for this illness and I don't want to make her worse?She needs sleep to and the need to go is stopping that for her to.

I'm so sorry, and you do sound so exhausted. Could it be that she doesnt have as much control over her bladder, and she's scared to have an accident? I just wonder, if you have her try a diaper, if maybe that would take away her anxiety over this, if it is anxiety.

I don't have an answer, I just know that a friends' adult wife had trouble with this also. I think it's another obsession. She was also tested for everything under the sun for bladder problems and it all came up negative. Maybe it's something in the brain that tells her she still has to go? HD destroys the brain so it doesn't sound too unreasonable to think it might also wreak havok with the part of the brain that says... uh oh, I have to pee. My friend would let her sit, pee, get her up.. and she'd SCERAM and CRY.. noooooooooooooo I have to PEEE.. I could hear over the phone and voice IM's.. it's really sad. I feel your pain. I wish there was an answer I could give you. Do you think a catheder would help or would she pull it out? My friend with MS has a cath .. DARN IT.. I cannot remember what type it's called but it's surgically put into her bladder through her stomach. I am one of her home health aides and it's very easy to drain, and she goes every 2 weeks to her doctor to have the actual cath drain to be changed and it's not at all painful.. Just a thought. Pat

Thankyou Pat and Barb.We have had sleep for the past 2 nights.I gave my daughter Kalms sleep tablets which are herbal which makes me feel better and she slept through till around 6am which is a result!She is less moody to.I won't give them to her every night but at least we have a fall back if we get desperate.I don't want to drug her out of her tree.I know pads will have to be used at some point.Thankyou anyway.

I looked up Kalms after you mentioned it , and found it interesting . I noticed it said it was good for irritability . Did you notice if it helped in that respect ? The main ingredients were Valerian (sedative) gentian(muscle relaxant) hops powder . I do think you would have to watch out if you were taking an SSRI along with that . Bye the way when Mom started taking meds for her incontinence , it seemed like it took a few months before Dad noticed an improvement . All my best . db

Well it's still early days.I gave them to her an hour before bedtime like they suggested.She has been easier to get off the loo to go to bed and not as grumpy when waking.So maybe.Tonight will be a test as I won't give her any and see what happens.

Glad the kalms are working. Another thought is melatonin, but not sure that'll work for you. I remember someone else saying here saying it was ineffective, but it has helped my little boy (who I pray is not HD +).

Hi all,thanks for the replies.Her paediatrician put her on Risperidone yesterday to help with the aggression and to help her relax.I have read up on it but I want to know have any of your pHD's used this and did it work?He has also taken an x-ray of her bladder,awaiting an appointment for an ultrasound scan.He also mentioned we may have to go down the catheter route to.Has this helped also?



Edited 3 time(s). Last edit at 05/13/2010 06:29AM by Blondie.

my Phd is on Risperidone and it does very well with keeping his temper level. He was always pretty easy going before he started showing signs of HD (that was just his normal underlying personality) but with HD he would have episodes of not being able to keep control when small things irriated him. He is very "cooperative" on Risperidone and there is no more "walking on eggs" around him if he was to get upset about something. Actually, ever since he's been on Risperidone I have NEVER seen him get upset about anything anymore. (I guess his easy going personality is a tribute to that along with the Risperidone) It does "dull" his personality but that was a trade off that had to be made. He was starting to show developing anxiety as he was rubbing his hands together all the time and pacing, we are adding Lexapro to see if that helps.