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So far the only supplement that has given my daughter any relief is GABA. It helped debilitating intrusive thoughts, eating disorder, confusion and really helped focus. The one thing it did not help is sleep. She pulls all nighters for days. Really! I am testing her neurotransmitters to see where she is at, but I have some questions. Do you know if it is better to do it through urine or blood work? and also what specialist is the best to help me with the results or should I read up and try figuring it out on my own? Thanks for your opinions!!

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I'll be interested in the answer, too, Trinitybella. The only way I've heard of "testing" neurotransmitters is PET scans which, from what I've seen, can illustrate where concentrations of certain ones sit in the brain. And then there's the Pfeiffer "scale" with respect to being histaminergic (excess of insufficient brain histamine levels), but that, so far as I know, is a clinical tool (behaviors, reactions to various interventions, etc.).

 

Good luck!

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Our integrative medicine PANS practitioner had us use a Pharmasan urine testing kit. I think it was covered by our PPO insurance at the time (UHC) but I needed her, practitioner, to interpret results for us and recommend supplements. L-theanine has been most effective (calming) but now I forget what it's targeting (sorry too much info-overload for this mama/honorary social worker!).

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Urine is best. Here is a link to understanding the pros and cons of each method, including spinal. https://www.integrativepsychiatry.net/validity_of_nt_testing.html

If she does well with GABA I would try phenibut, which is a precursor to GABA and crosses the BBB quickly. I purchased the purest form from Happy Hippo.

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We did the urine test twice. Got totally different results, with child showing no change in symptoms. Her neurologist said the urine testing is not accurate, but I know mainstream med docs are against anything they haven't been taught, so I didn't take much stock in what she said either. She didn't suggest any other kind of testing.

 

The gut affects the neurotransmitters. Has she had much gut testing, such as stool test or OAT test? My dd's gut is a mess, but with her eating disorder, I can't get her to change her diet much, and she LOVES sugar, pasta and cheese. I'm more concerned with her getting her weight on at this point.

 

That said, we resorted to pharmaceutical meds back in February. We THINK they helped, but not positive due to her doing IV abx for Lyme and PEX a few short months before. But a day or two after starting very low dose Anafranil (Clomipramine) her intrusive thoughts and some of her panic subsided and she was able to eat more. She still has eating disorder and exercise compulsion thoughts, but the excessive intrusive thoughts, that were so distressing that she would literally grab her head and fall to the floor begging, "Make them stop, make the thoughts stop" have completely subsided. Also a bonus, this med helped her to sleep and increases appetite. (At least for our dd...) She was in TERRIBLE shape before starting this drug, and one ED center suggest calling in hospice. (She had a BMI of 11 at that point...) Honestly, I don't even want to think about this, so... MOVING ON... - we aren't POSITIVE it was the Anafranil/Clomipramine, but it is an older drug for OCD and I can't believe no doc mentioned this one in the over 10 years she's been sick. I HATE having her on these meds, but I'm terrified to take her off, because even though she isn't 100 %, she has gained most of her weight back and is taking a class and working a bit.

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My daughter takes low dose (25 mg), anafranil and it is a huge help to her. We just tried to switch to celexa and my daughter (almost18) insisted she had to go back on it. This is a great med for ocd and anxiety and is often over looked due to side effects. It is important to check levels as my daughter has been too high on it and that can be serious.she has been on it, at varying doses, since 2009.

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