My 19 year old daughter with JHD is repetitively rubbing her finger which she has infected twice and has had antibiotics for.Also she will pick her nose till it bleeds heavily.She will sometimes stop it if you tell her but will start again if I am out of site for a few mins or I will find her with blood all over her face in the mornings in bed.She will pull gloves off so that is no use.I have held a mirror to her face before I clean her to show her what she is doing to herself.She does say blood but this hasn't stopped her.Anyone else come across this and what did you do?

Maybe it's anxiety in the form of compulsion. My phd husband started rubbing his arms and face, I noticed it after he stopped working and was home with nothing to do. Lexapro helped with the anxiety but he still does it some.



Edited 1 time(s). Last edit at 08/15/2012 11:00AM by LizzieAnn.

I am so sorry. This is so difficult. The only thing I could suggest is talking to the doctor about OCD medications or using gentle arm restraints when you have to leave her alone. When I was in ICU and I was pulling out tubes they had to restrain my hands for my own well-being.

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Thanks guys,I guess it's just been getting to me.She has pulled her hair out and scratched herself to but these come and go unlike the above.She even pulled her eyebrow hair out once and this inflamed and bled.

We have a home to school diary.This is meant for us to keep abreast of what is going on for Rachel that day.I put whether she slept well that night and if she has eaten breakfast ect.They put what activities she has done that day and mood,eaten ect.However another diary which is kept between staff (and we didn't know about)came home by mistake when she broke up for the xmas hols.They put the eyebrow incident down as suspicious and a report was put on deputy heads desk.They have also been body mapping bruises with anything suspicious going to head(principle).Can they do this?

I have a morning carer now to help me get her ready for school but I don't want one here 24/7.So I do take her to the toilet alone or move her about.I don't want her in the wheelchair all the time either.She is very stiff as it is and that will make her worse.She has fallen with me and even can sway forwards/backwards and even sideways into doors/walls ect.They usually have 2 or 3 staff members to move Rachel so falls are less often at school although some have happened.I feel hurt and betrayed by the school.Thankgod she leaves there in July!!!

I wouldn't view this as a threat if I was you, although I can understand how initially you may feel that way. I think they are merely covering their own butt here. Probably documenting missing hair, bruising etc when she comes in that probably happened at home verses what happens in school that they could be held liable for. I would talk to them about this if I were you in a non combative way to get it all out in the open. Pat

Oh gosh Blondie, i think what Pat said is probably very true, it will be ok hon. I would definitely think too that maybe she's having some kind of anxiety, and so maybe something like ativan, or a raise in something like seroquel if she's on that might help (((hugs)))

LizzieAnn Wrote:
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> Maybe it's anxiety in the form of compulsion.
> Like a horse in a stall or a dog in a cage pacing.
> My phd husband started rubbing his arms and face,
> I noticed it after he stopped working and was home
> with nothing to do. Lexapro helped with the
> anxiety but he still does it some.
You may try this or see the doctor for more help..

High School Diploma

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" help. Did not have much success with Ativan or benzodiazpines as she was already taking up to 12mg ativan a day (at 22 kilos) for seizures. I think what is often misunderstood is how medication is metabolized with JHD vs. adult HD. . I would consider the slightest twitch -itch or mucus in the nose could be setting your daughter in motion of the behavior. And of course "boredom" from what she can no longer initiate or participate in- sitting "still" only makes every sensation that much stronger and obvious. I completely understand how the moment you walk out of the room-all you know what breaks loose. And yes, I agree, consulting with the neurologist could be beneficial.

And in regard to the school "concern" notebook. I felt the same way. There is definitely a huge feeling of betrayal & yes I'll say it-resentment. I can assure you not one of those people at the school could provide the loving, daily care needs for your daughter as you do! Really it comes out of fear of the school personal. They are worried about liability and being blamed for marks or lack of care. My daughter had the same aide at school for 4 years, but that last year of school, when her medical issues increased, there seemed to be "blame" placing verse lets all work together to make sure this child gets what she needs emotionally and physically. Because she had a port for medication a RN nurse was required to accompany her through the school day. Unfortunately this became an issue (and excuse my blunt comment), people are such idiots and become so self consumed-- it became school personal vs. nurse or mother care. So horrible, that the school personal stopped helping the nurse and would either walk off or turn away. These were the people who used to hug, cradle, play and interact with my daughter. So really, I became angry - it was a statement they made to Jordan.... not the nurse.... It is so pathetic. If you feel concerned, I would suggest obtaining a letter from the neurologist. I did this many years prior to the obvious medical issues. I carried the letter everywhere and gave copies to the school. The letter just stated the diagnosis and all possible symptoms. Unexplained bruising, etc, can be on there as a result of obsessive behaivor and involuntary- rigid-or dystonia movements.

I completely understand both issues as they related to my daughter and really feel for what you are going through. I too never wanted nor had a 24 hour nurse or assistance. And I will tell you, it provided great comfort (for me and I belive Jordan) in knowing this lead to a stronger more unbreakable, loving bond. To know that there is one person who stuck by her is of great comfort. One person who would do what ever it takes to see that smile, and provide any and all care.. not just what you are paid for, or selected care.... ALL CARE- be it read a book, watch a movie, go to a store, hold hands, assit on toileting to changing a diaper, feed, iv medication, change positions, just all around care... nothing that will ever stop you from caring for your child is the most important thing a child needs to know. While this does not mean we do not need assistance at times... but it means we are there regardless of what the disease throws at them..and no matter what the next obstacle is...we will be there then!

Thanks all for your thoughts and suggestions,it has helped.

Stacy your words rang so true and I really felt you have sadly walked my shoes.Thankyou for taking the time to respond.xx

For now I have put my own note in the staff diary and made comments on past queries of suspicious marks,so wait for the phone call when she goes back tomorrow.I will contact a JHD care advisor here in the UK for further advice and maybe they could speak to the school to?

I just feel if she does something on their watch that's ok,but on mine then it's suspicious