Phasmid Posted July 23, 2010 Report Posted July 23, 2010 Hi all, I think I may be only one of two or three moms of kid with trich. Others out there? Well, it is going to drive me mad. My son is doing well on prednisone now, and did 30 days azithromycin. But he CONTINUES TO PULL OUT HIS EYEBROWS/LASHES!!! Anyone have good results with the N-acetylcysteine amino acid? I am at end of rope with this. Especially since they had grown back by last winter. Now, all gone again, and he's starting a new school! We did not see Dr. K., and have not done IVIg. I wonder if THAT would be the solution??
tpotter Posted July 24, 2010 Report Posted July 24, 2010 One of the children I work with probably has trich (I'm really pretty certain, but not being a dr, I can't make the dx.) But, I did recommend that the mom take her daughter to a neurologist. They have an appt. I'll let you know what he says.
MomWithOCDSon Posted July 24, 2010 Report Posted July 24, 2010 The literature suggests that yes, NAC can help trich. We have some moderate to severe OCD issues, though not tric, and we have been using NAC for the last several months; in fact, based on the literature, we just decided to increase the dosage. There is also literature regarding riluzole, which is currently undergoing a trial at NIMH for OCD, being an effective med for trich. It is already FDA approved for ALS, so use of it for trich would be off-lable, but if you have a willing doc, it might be worth a try. We've talked to the NIMH about the riluzole/OCD trial, and the only reported side effects thus far are 2 (out of 54) cases of pancreatitis (one of which did not occur until more than a year on the drug), and some incidents (again, 2 were high enough for them to call a halt to the trial)of increased liver enzymes. Like any drug, I guess, your kid will need to be monitored. I have also read some anecdotal (on another forum not unlike this one) of some consequences of long-term NAC use. None of the scholarly literature agrees, so it's a little hit and miss. Again, I guess we will make sure and have our DS's liver function and other key issues checked and monitored if we continue to use it long-term.
Suzan Posted July 24, 2010 Report Posted July 24, 2010 Since my dd7 is talking about pulling her hair out recently, I am going to talk to our neurologist about NAC too since I am worried about this for her. We don't go back to see him in the office for a few months though so I guess it depends on how she is doing on when I will reach out to him. Susan
dut Posted July 24, 2010 Report Posted July 24, 2010 oops sorry, my ds2 got to the pc! what I was going to post was that I'd been a terrible nail biter all my life (according to what I've read nail biting is just another version of trich, as is skin picking etc). Anyway, I was dx'd bordeline low thyroid after my dd's birth. I was started on T3 and T4 thryoid replacement and within 5 days of starting the meds, the nail biting urge just disappeared. Not saying this is the case for your child but thought I'd mention it. We tested my dd's thyroid levels pre a flu she had last year and she was ok. Post flu and a bad PANDAS flare, she tested with low T3. That episode remitted completely, with the exception of the nail biting which remained. (I'm wondering if my dd responds to immune assault with a systemic inflammatory process that is severe enough to be damaging a number of her body's systems...) anyways, thought it worth a mention
MomWithOCDSon Posted July 24, 2010 Report Posted July 24, 2010 oops sorry, my ds2 got to the pc! what I was going to post was that I'd been a terrible nail biter all my life (according to what I've read nail biting is just another version of trich, as is skin picking etc). Anyway, I was dx'd bordeline low thyroid after my dd's birth. I was started on T3 and T4 thryoid replacement and within 5 days of starting the meds, the nail biting urge just disappeared. Not saying this is the case for your child but thought I'd mention it. We tested my dd's thyroid levels pre a flu she had last year and she was ok. Post flu and a bad PANDAS flare, she tested with low T3. That episode remitted completely, with the exception of the nail biting which remained. (I'm wondering if my dd responds to immune assault with a systemic inflammatory process that is severe enough to be damaging a number of her body's systems...) anyways, thought it worth a mention I think it's also interesting, Dut, in light of that other PANDAS website 3boysmom posted yesterday (e-pandas.com). If you look at the list of medications her DD was put on to resolve the PANDAS issues, at least one of them was for thyroid, as well. Maybe this is a part of the picture only a few people have clicked into as of yet?
dut Posted July 24, 2010 Report Posted July 24, 2010 Momwithocdson - hi.. for my dd all her numbers for infection eg ebv, strep, herpes etc are normal. All her CBC stuff is normal. All her IgGs are normal. In fact nothing seesm to be wrong on paper but when we start looking at numbers for "organs" such as thyroid, liver, adrenals, gut those are the ones that are off. I can't decide if we are seeing a damaging response to system-wide inflammation (that includes BBB breach) that is cause by the PANDAS or if her PANDAS is just yet another example of her excessive inflammatory response....
philamom Posted July 28, 2010 Report Posted July 28, 2010 Hi all, I think I may be only one of two or three moms of kid with trich. Others out there? Well, it is going to drive me mad. My son is doing well on prednisone now, and did 30 days azithromycin. But he CONTINUES TO PULL OUT HIS EYEBROWS/LASHES!!! Anyone have good results with the N-acetylcysteine amino acid? I am at end of rope with this. Especially since they had grown back by last winter. Now, all gone again, and he's starting a new school! We did not see Dr. K., and have not done IVIg. I wonder if THAT would be the solution?? My daughter was pulling at her eyelashes and eyebrows. It has resolved with IVIG.
Phasmid Posted July 30, 2010 Author Report Posted July 30, 2010 Ok, I started the NAC after doing some research and talking with his doc. He didn't know much about its use for trich., but he uses it in autism. Here is a good published study: http://www.ncbi.nlm.nih.gov/pubmed/19581567?dopt=Abstract
philamom Posted July 30, 2010 Report Posted July 30, 2010 Ok, I started the NAC after doing some research and talking with his doc. He didn't know much about its use for trich., but he uses it in autism. Here is a good published study: http://www.ncbi.nlm.nih.gov/pubmed/19581567?dopt=Abstract Is it working? Is it also good for ocd?
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