My daughter had ADEM 10 years ago. I thought she made a full recovery. However, she's been experiencing a lot of headaches lately & developed Trichotillomania (a compulsive hair pulling disorder). I was wondering if anyone else had these problems? Thank you.
Hi there,
I haven't had Trichotillomania, but I have become much more obsessive at things, like scrubbing my hands REALLY hard when I wash or obsessively focused on projects. Perhaps the compulsive traits are part of the residual effects? Anyone else?
As for the headaches, I was quite prone to awful headaches prior to ADEM, however since they have diminished in quantity. However, I do seem to "feel" the pain more and they last longer now when they hit.
I don't know if that helps, but that's my experience.
Good luck,
LauraK
Thanks LauraK. I think you may be right. This disease is so rare, there is probably not enough studies to really know if they are linked. My daughter started taking Prozac, plus therapy. It's helping but not a complete cure yet. She has been pull free for 10 days but it takes so long for her eyelashes and eyebrows to grow back that she hates to go to school. I am so torn. I hope you get to feeling better.
Thanks!
LauraK said:
Hi there,
I haven't had Trichotillomania, but I have become much more obsessive at things, like scrubbing my hands REALLY hard when I wash or obsessively focused on projects. Perhaps the compulsive traits are part of the residual effects? Anyone else?
As for the headaches, I was quite prone to awful headaches prior to ADEM, however since they have diminished in quantity. However, I do seem to "feel" the pain more and they last longer now when they hit.
I don't know if that helps, but that's my experience.
Good luck,
LauraK
I can imagine her and your frustrations. I take Diazapan (sp?) to help with my effects, but mine tend to be through process, memory and emotional challenges.
I'm glad you've found this group. I think there is a caretaker/parent section you might check out.
Sending out positive thoughts for you both.
LauraK
Thanks, LauraK! I am going to figure all of this out and get this behind her!
LauraK said:
I can imagine her and your frustrations. I take Diazapan (sp?) to help with my effects, but mine tend to be through process, memory and emotional challenges.
I'm glad you've found this group. I think there is a caretaker/parent section you might check out.
Sending out positive thoughts for you both.
LauraK
Just today I read a posting here mentioned trichotillomania and realized my 10 year old son has it too. He had ADEM 8 months ago but has been pulling his hair for about 4 years now but since he was a toddler he had somewhat obsessive behaviors like for example he had to be holding something all the time in one hand like a spoon or a tooth brush. We would take away one thing and he would find another similar shaped object. The more I read the more I think all these is somehow related to ADEM. Maybe I am being paranoid?
My daughter has been seeking therapy for the Trich, She also takes Prozac, plus N-Acetylcysteine (NAC) it's an antioxidant that I have found has helped in some clinical studies. My daughter has went through a lot of changes since she was diagnosed with ADEM ten years ago; personality changes, over the top growth spurts compared to my other children and now the hair pulling. She is 6 foot tall and I have always attributed it to all of the steroids she had to take to reverse the effects of ADEM. However, her doctors didn't think that it had an direct relation to her size now. She did develop a touch Cushing's Syndrome after she completed the steroids. She also went from a size 7 to a size 12 within about a 4 month span.
I wish you all the luck in the world with your son. If I find out anything that I think may help, I will be sure to let you know. Thanks!
Update on my daughter. I took her back to Kosair's Children's Hospital about 2 weeks ago. The ER doctor ordered an MRI and found no issues her brain. I was so relieved. They diagnosed her with rebound headaches and gave her a migraine cocktail. It has seemed to help with the headaches. He also said that the migraines could be hormonally induced. We are going to follow up with a MD in our home town. However, she is still pulling her eyelashes and eyebrows out. I feel so bad for her. I mentioned hypnosis therapy to the ER doctor for the hair pulling. He advised that there has been success with this type of therapy. I am trying to get her an appointment in Louisville for this. I will let you know if it helps. Please keep her in your prayers and I will do the same for all of you. :)