Update!

[Phasmid]

Back last March, we looked into treating the "residual" symptoms that wouldn't remit: Sleep problems, no attention in school at all, failing grades, mood issue, rages, trichotillomania. Since he had no sign of strep (although a huge history earlier with initial episode), but had very elevated antibodies to Mycoplasma, we went with doc's advise to treat with Biaxin (clarithromycin). Some improvement, but then bad again. Second doc (local to us) started my son on 30 days azithromycin, and supplements. Mood and behavior improved DRASTICALLY. Still, eyelash, eyebrow pulling continued. He then ordered 30 days tapering prednisone. This really helped him overall with the anxiety he had and his compulsion to pull. We then added NAC (N-acetyl cysteine, an amino acid precursor) and after one month of NAC his eyebrows and eyelashes are growing in nicely and he has stopped pulling!! The first meds were started in March and he finished prednisone in July or early August. He is doing great! He is finally a joy to be around, and has adjusted to a new school very well. We haven't had a meltdown or tantrum, even slight, in .... I can't remember!

 

For those of you dealing with trichotillomania, the NAC seems to work well. It is of course hard to determine, since he also had prednisone, which did a lot to help him. The studies that exist do show great effectiveness. There is a study now on children (previous studies were adult subjects only) through Yale. I spoke with the study coordinator and got the dosing information and bought it at a health food store.

 

Thanks to those who posted info on NAC for trich!

[Fixit]

Back last March, we looked into treating the "residual" symptoms that wouldn't remit: Sleep problems, no attention in school at all, failing grades, mood issue, rages, trichotillomania. Since he had no sign of strep (although a huge history earlier with initial episode), but had very elevated antibodies to Mycoplasma, we went with doc's advise to treat with Biaxin (clarithromycin). Some improvement, but then bad again. Second doc (local to us) started my son on 30 days azithromycin, and supplements. Mood and behavior improved DRASTICALLY. Still, eyelash, eyebrow pulling continued. He then ordered 30 days tapering prednisone. This really helped him overall with the anxiety he had and his compulsion to pull. We then added NAC (N-acetyl cysteine, an amino acid precursor) and after one month of NAC his eyebrows and eyelashes are growing in nicely and he has stopped pulling!! The first meds were started in March and he finished prednisone in July or early August. He is doing great! He is finally a joy to be around, and has adjusted to a new school very well. We haven't had a meltdown or tantrum, even slight, in .... I can't remember!

 

For those of you dealing with trichotillomania, the NAC seems to work well. It is of course hard to determine, since he also had prednisone, which did a lot to help him. The studies that exist do show great effectiveness. There is a study now on children (previous studies were adult subjects only) through Yale. I spoke with the study coordinator and got the dosing information and bought it at a health food store.

 

Thanks to those who posted info on NAC for trich!

 

YOU DID GREAT!!!!

So happy for you!!!!

are you adding vitamin C..you need it so the nac wont cause kidney or liver problems..forget which..and i don;t remember if it 1/3 of nac does or 3x the dose of nac....

[dut]

hi - glad you're seeing so much improvement. Do you mind me asking how much NAC you are using?

 

thanks

[purple66p]

I take NAC. Vitamin C is 3x amount of NAC. It is to prevent kidney stones.

[Phasmid]

We are using 600 mg. about every other day or daily if i can remember. The study dose is 1200 mg. I believe. I did not know about kidney stones. This is not mentioned in the study. Thanks, I will look into that. I do use 1000 mg. of vit. C and also vitamin D.

 

 

 

 

 

hi - glad you're seeing so much improvement. Do you mind me asking how much NAC you are using?

 

thanks

[Suzan]

Super great news! Congrats and thanks for posting!

[norcalmom]

That so great - I'm so happy for you both! I wonder if NAC would work for other compulsions as well? I'm too chicken to try it, we are 5 weeks post ivig and don't want to introduce another variable.

[kimballot]

You are so good for hanging in there and really working to eliminate the problems. Congrats!! job well done!

[thereishope]

Thanks for posting an update! I'm glad you're seeing improvement!

[mom love]

Phasmid, did your son taper down the dose of zithro toward the end and is he now still on a prophylactic antibiotic?

[Phasmid]

No taper on this particular antibiotic, but when he was acutely ill in 2009, we definitely did a LONG taper off vancomycin. We don't know if it was strep back then. The only documented infection was Clostridium difficile, and he had colitis from the chronic infection that went untreated. We tapered then for a couple of months. Personally, this past July when he was on azithromycin, I think that the benefit was the anti inflammatory effect rather than an antibiotic effect. I think this because he had no sign of infection, he had been on clarithromycin already for 30 days. He is not on a prophylactic antibiotic. I prefer only to treat a known infection, since he has had C. diff. colitis, and we cannot go there again!

 

Mary

 

 

 

 

 

 

 

 

 

Phasmid, did your son taper down the dose of zithro toward the end and is he now still on a prophylactic antibiotic?

[T_Mom]

No taper on this particular antibiotic, but when he was acutely ill in 2009, we definitely did a LONG taper off vancomycin. We don't know if it was strep back then. The only documented infection was Clostridium difficile, and he had colitis from the chronic infection that went untreated. We tapered then for a couple of months. Personally, this past July when he was on azithromycin, I think that the benefit was the anti inflammatory effect rather than an antibiotic effect. I think this because he had no sign of infection, he had been on clarithromycin already for 30 days. He is not on a prophylactic antibiotic. I prefer only to treat a known infection, since he has had C. diff. colitis, and we cannot go there again!

 

Mary

 

 

 

 

 

 

 

 

 

Phasmid, did your son taper down the dose of zithro toward the end and is he now still on a prophylactic antibiotic?

[T_Mom]

Mary--wonderful news!

 

May I ask you about the study/article? on NAC that was mentioned--do you have the link?

 

Also, would you mind sharing the dosing you are using of the NAC and the weight of your dear son? (with this episode our d is starting to pull her eyebrows--)

 

Also, right now your child is no longer on antibiotics--correct?--thanks.

 

SO, so glad for you--

[Phasmid]

The dose I am giving is the sub-therapeutic dose used in the study of 2400 mg. We use 600 mg. only. I just prefer to use as little as possible as long as it works.

 

The study on children is actively recruiting participants

 

http://clinicaltrials.gov/ct2/show/NCT00993265

 

 

 

 

Mary--wonderful news!

 

May I ask you about the study/article? on NAC that was mentioned--do you have the link?

 

Also, would you mind sharing the dosing you are using of the NAC and the weight of your dear son? (with this episode our d is starting to pull her eyebrows--)

 

Also, right now your child is no longer on antibiotics--correct?--thanks.

 

SO, so glad for you--