Trichotillomania

[momcap]

DS7 now has trichotillomania. He's plucked a quarter-sized patch of hair off the crown of his head. It is very noticeable. Even his teacher and principal asked me about it today. I was able to bribe him into a very short haircut, which is a miracle since hair-cuts are a world-stopping crisis for him. I'm hoping with his hair so short he won't be able to pluck at it for now. He says he's not leaving our house again until he has his whole head plucked bald, so that it matches. Agh! Then DS5 asked me if he had a bald spot too because his brother was in his room plucking HIS hair last night. So DS7 is plucking his own hair AND his brother's?!?! Is there anything I can do? I don't want to draw any more attention to this than I already have, but it needs to stop! Please help!!

[Fixit]

since this episode started 2 years ago...ds pulled a quarter size spot out of his head 3 times...

the first 2 were start of spring allergy season..

the last time was beging of fall allergy season.....i could also tell the fall was startign to bother him more than in the past....

that was kinda of the final straw to treat allgeries more aggressive and started allergy shots....

he did not pull out his hair this spring..but also not doing any sports this year...

his allergies are better...but we are in ramped stage from start of lymes and i now wonder how much allergies are keeping him there...his eyes are dialated

in the mean time..things that may have helped was a selenium shampoo(per doc suggestions)(did look a little dry)..selenium capsules

for ds,,it started with a sensation under the skin...

 

as the more i know..the more i don't...could it be lymes, allergies,or just SOT

[melanie]

http://clinicaltrials.gov/ct2/show/NCT00354770

 

 

NAC google tric and NAC tons of research and its harmless ..We use it for OCD works

 

Melanie

[momcap]

since this episode started 2 years ago...ds pulled a quarter size spot out of his head 3 times...

the first 2 were start of spring allergy season..

the last time was beging of fall allergy season.....i could also tell the fall was startign to bother him more than in the past....

that was kinda of the final straw to treat allgeries more aggressive and started allergy shots....

he did not pull out his hair this spring..but also not doing any sports this year...

his allergies are better...but we are in ramped stage from start of lymes and i now wonder how much allergies are keeping him there...his eyes are dialated

in the mean time..things that may have helped was a selenium shampoo(per doc suggestions)(did look a little dry)..selenium capsules

for ds,,it started with a sensation under the skin...

 

as the more i know..the more i don't...could it be lymes, allergies,or just SOT

 

That's very interesting about allergies. He could hardly get out of bed this morning; said he was sick and was very congested. I thought, here we go with another virus. He went to school for an hour and a half. When he came home he was no longer congested. Could this be an allergy to something in his room? Dust mites? IDK...I've never pursued the allergies, but I know he has them (itchy red eyes from time to time, esp in the fall). With all of his other issues demanding immediate attention, allergies got pushed to the back-burner. He always has a really bad time in the spring and fall. I thought that was more connected to the mood disorder. I don't know anything about allergies since I've never had any. Spring allergy season / fall allergy season: I guess I have something new to start researching. <Sigh> We are also pursuing lyme.

[momcap]

http://clinicaltrials.gov/ct2/show/NCT00354770

 

 

NAC google tric and NAC tons of research and its harmless ..We use it for OCD works

 

Melanie

 

Thanks Melanie. I will definitely google NAC and see if it can help!

[Phasmid]

Hi momcap,

 

my son has had this half his life now- since age 6 at the onset of PANDAS. We tried NAC. Didn't do quite the whole dose as per the study at Yale. What we did try didn't work for my son. We may try again. But he had low dose IVIG Jan. 6 of this year. For the first time, he stopped pulling for two months. He is pulling again. Eyebrows gone again. We are working on insurance denial appeal for high dose IVIG. Dr. K, in an email response to me, said that trichotillomania responds to high dose IVIG as it is a sign of immune dysfunction.

 

 

[SarahJane]

My son started pulling out his hair AFTER HD IVIg. We had a day of it in the 2 week post-IVIg period...then he stopped. Then another day of it when he had a big backflip in Jan. Then at 3 months, he started pulling. He'll twist into a knot & then yank it out, which breaks a lot of hair off & pulls some out. He is pretty thin on top with some bare spots & peach fuzz growing back in. He's a blonde & light anyway, so it's not as noticeable unless you're his parent obsessing over his compulsion. And I found his stash behind his bed last week where he'd hidden 10+ clumps. That made sense to me because it seemed like BOOM the damage was done, & I guess he'd laid in bed one night & did most of it. I think (think) he's stopped for the most part, but still catch him twisting. We're seeing other stuff too...not just the trichotillomania (which I've learned to pronounce & spell now ) This hair pulling was NOT one of his PANDAS symptoms...came on after IVIg. He has always twisted his hair when he was tired, but this is a whole different ballgame.

 

We found high IgG myco p (677!) in a test we did 2 weeks ago (his strep titers don't rise, so it could be strep too but they weren't high). We are trying 2 weeks of Biaxin to see if that helps (250mg/2ce a day). If after 1st week, we're not seeing improvement then we're adding a 5-day steroid burst. If marked improvement, we'll likely be heading for an IVIg booster with K. I didn't get any instructions as to what will happen if we see no improvement. ::SIGH:: I guess we'll go for a buzz cut & get real cozy with our DVR & On Demand & premium cable channels. We've not been able to leave the house for 3+ weeks due to PANDAS. ::DOUBLE SIGH::

Edited March 31, 2011 by SarahJane

[momcap]

My son started pulling out his hair AFTER HD IVIg. We had a day of it in the 2 week post-IVIg period...then he stopped. Then another day of it when he had a big backflip in Jan. Then at 3 months, he started pulling. He'll twist into a knot & then yank it out, which breaks a lot of hair off & pulls some out. He is pretty thin on top with some bare spots & peach fuzz growing back in. He's a blonde & light anyway, so it's not as noticeable unless you're his parent obsessing over his compulsion. And I found his stash behind his bed last week where he'd hidden 10+ clumps. That made sense to me because it seemed like BOOM the damage was done, & I guess he'd laid in bed one night & did most of it. I think (think) he's stopped for the most part, but still catch him twisting. We're seeing other stuff too...not just the trichotillomania (which I've learned to pronounce & spell now ) This hair pulling was NOT one of his PANDAS symptoms...came on after IVIg. He has always twisted his hair when he was tired, but this is a whole different ballgame.

 

We found high IgG myco p (677!) in a test we did 2 weeks ago (his strep titers don't rise, so it could be strep too but they weren't high). We are trying 2 weeks of Biaxin to see if that helps (250mg/2ce a day). If after 1st week, we're not seeing improvement then we're adding a 5-day steroid burst. If marked improvement, we'll likely be heading for an IVIg booster with K. I didn't get any instructions as to what will happen if we see no improvement. ::SIGH:: I guess we'll go for a buzz cut & get real cozy with our DVR & On Demand & premium cable channels. We've not been able to leave the house for 3+ weeks due to PANDAS. ::DOUBLE SIGH::

 

Sarah Jane,

 

We can't get myco p labs in Canada. But he has elevated ASOs. My DS7 did the major plucking at night too. I saw him pulling a couple of strands on the couch a few weeks ago, and again the day after the big bald spot. But the big bald spot happened at night when he couldn't sleep. He refused to get up in the morning saying he was sick, and at the last second ran outside to the bus. Now I realize he was just making sure I didn't see his head. I sent him to school the next day but he was so upset about his bald spot that he convinced the principal to drive him right back home. Never mind that he's already missed over 2 months of school this year, and is now only going for 1.5 hours a day. Grrr.

 

He's also been stuck in the house for weeks at a time - the black widow and brown recluse spiders might get him if he goes outside! Then he was convinced the spiders were in the bathroom and he couldn't go in there. That was not fun. We're in an area that is too cold for these spiders. We still have snow on the ground! But I couldn't convince him. The really strange thing is that he's not scared of spiders when he's not in exacerbation. He picks up the harmless ones and plays with them.

 

We're in a marginally better place right now, although he's backsliding pretty fast. Just wanted to sympathize. I wish I had answers for us all.