susie

With my daughter, it took a while on the fluconazole before her hair began to fall out. Not only did it come out easily, but the hair itself (the new growth near the scalp) seemed very, very weak. Check out this reference talking about long term use of fluconazole and alopecia. http://www.ncbi.nlm.nih.gov/pubmed/7625624

Hi Anna, My daughter had significant hair loss from fluconazole. Not sure if your son is even on it, just wanted to mention it in case. I had a friend in high school who picked out all of her eyelashes. It seems like if he's pulling constantly, then that could be the cause (but I don't know anything about trich.)

My DD9 takes l-tryptophan at bedtime. It has been very helpful for her anxiety and worked well from day one.

Ok, thank you so much! Now I have a place to start.

We recently got Yasko results back for my daughter and she also has COMT +/+ mutations for both the v158m and h62h. She also is +/+ for MTHFR c677t and has VDR mutations as well. I have to admit that I have not implemented many new supplements based on these results because I'm completely overwhelmed by the whole thing. We've been doing biomed for 6 years and my daughter's list of supplements is a whole page long, so I'm no stranger to complicated protocols. How do you choose which from the list to use? There's no way we could ever afford the whole enchilada, much less have the time to swallow all of the stuff. How do you do it? I thought that we would be getting an individualized supplement list, but the suggested supplements for everyone is an entire page long, then there are the 4 pages that are based on the mutations. I know there are answers in those reports that will help us if I can only figure out what to do. My daughter's PANS symptoms are fairly mild now compared to a couple of years ago, but we just can't seem to get rid of the tics and anxiety.

Could I get those names also? I live in the Seattle area.

I wonder if it's a tic of sorts since it's not occuring at night. To me it seems possible that the urinary sphincter muscle could spasm/tic also.

We use Blt tincture. My daughter is 8 and gets 30 drops. I use an empty capsule (not sure of the size, but a larger one) and add fill it with the drops. You have to give it right away (within a minute or so) so the capsule doesn't dissolve.

If it's causing candida die-off, then the toxins could cause aggression. My daughter is on it for candida prevention. Have you tried binders (away from all meds), Like bentonite or charcoal?

I tried trazadone for sleep several years ago (I've tried many things too). I believe that it gave me disturbing vivid dreams and didn't work all that well. That was just me though, I've heard it works well for some.

My DD7 stopped rifampin about 2 months ago, not because we were sure that bart. was completely gone, but because she was losing huge amounts of hair and we thought that maybe the rifampin was the cause. She was in a pretty good place when we stopped. OCD and anxiety were much improved and a facial tic completely disappeared while on the rifampin. She took the rifampin (along with azithromycin and augmentin) for about 4 months. We were told to keep an eye out for increase in bart symptoms and that relapse is usually with a week. We did not think that we saw any increased symptoms in the first week, but now I'm wondering if symptoms are re-emerging. She is having increased anxiety and obsessing more and has gone through periods of asking a lot of questions about things that have her worried (like fires and things). She asked a bunch of questions about fires for a couple of nights in a row, but then stopped. I'm worried that if this is relapse, then the 4 months of treatment will have been for nothing. I have an RX for bactrim, but haven't started it. We could also resume the rifampin since the hair loss has mostly stopped (we never really figured out the cause). Has anyone seen bart. relapse take longer than a few days or a couple of weeks?

I love astaxanthin. I buy mine from Swanson. Mercola has a good article here: http://articles.mercola.com/sites/articles/archive/2011/07/12/astaxanthin-the-antiinflammatory-nutrient.aspx

I would like to hear your experiences with SSRI meds. in your kids. My daughter was initially thought to be PANDAS, but strep was never proven except in her gut. She had elevated CamK and anti dopamine 1 antibodies. She was later found to have lyme. She's been on antibiotics and is doing much, much better in terms of OCD and tics, but still has pretty significant anxiety issues. Our ped (PANDAS specialist) wants to start her on Lexapro. Dose is to be 2.5mg X 4 days, then 5mg X 1 week, then eventually up to 10mg as tolerated. My daughter is 7 and weighs 53#. I know I've heard about "activation" with SSRI's and I'm not really sure what that means. Increased symptoms? I'd love to hear if others have had success with SSRI's and at what dose. I wasn't expecting the dose for my daughter to be the full standard dose. Thanks in advance for any insight you can give.

I'm interested in what you're saying about MSH and OCD connection. But what I'm not getting is that 32 would be critical when 0-40 is the normal range. Is this supposed to be critically high or low? Thank you, Susie

Florastor is a type of yeast, so would be killed by the nystatin.