I imagine all of us here have experienced a period of grief upon being told a child has this illness. This community gets what you're going through, and will be able to help you navigate how to help your daughter. (In addition to the online forums, there are also online support groups to access- there's a sign up link on the support group tab)

 What's so difficult in trying to figure out what to do is trying to understand what this illness is. As you've already noticed, there are many diverse symptoms, and a dx develops as the severity of those symptoms increase. We struggled for several years before my son was dx'd, and even then, we saw multiple drs to make sure we were  doing what we could. What I have come to realize is that his dx wasn't static. His dx was something that gave us a direction to help him. How we helped him evolved as we learned more about his illness and how he reacted to therapies.  We felt back then as you do now, that this was a life game-changer.  Don't be without hope. It's been a challenge, but it's not static, and things can get better. I was told when my son was 7 to expect to have to hospitalize him, expecting his symptoms to out pace the meds he was on.  At 12, he's been doing ok, utilizing some schooling interventions, and addressing metabolic issues with supplements.  We intitially used meds to address acute symptoms. In 2002 when we started using meds, it was mostly finding anecdotal accounts of what worked from sites like this- from other parents- to reassure us we were doing the most we could. In 2005, a consensus group of professionals developed some Treatment guidelines which supported methods we had engaged. We've also been learning more about the biologic and biochemical workings behind these symptoms over the past decade. For my son, it was helpful to work with an integrative MD who took a systemic approach to my son's illness. Eventually, we learned that a number of genetic predispositions together with a number of environmental factors cumulatively created a 'perfect storm' that overtook his functioning abilities. 

When I first came here, I understood my son's illness was 'chemical'- a chemical imbalance. I also understood it to be genetically controlled, and as a predisposition, there wasn't much to be done other than somehow regulate those chemicals associated with mood. Fortunately, there were meds to do that.  Today, there are more options, but it's still mostly a trial and error process. As I noted above, we used meds to treat acute symptoms. Those meds helped to keep him safe and enabled him to at least participate with peers in school, but there were still challenges and side effects. One intriguing area of this website is the CAM (complementary medicine) forum. It didn't exist as a separate entity when I started, and there were heated debates over the therapeutical merits, particularly over a micronutrient formula called EMPower and some reports by parents describing the positive effects. Over time, I shifted more focus towards understanding the biochemical activity- nutrients, digestion, enzymes... and how they related to neurotransmission, mitochondrial and executive function. It was a different approach than understanding meds which target neurotransmitter actions. For us, certain things started to gel- It was kind of backing up and troubleshooting the error, rather than associating cause with effect (remembering that mental illnesses are based on symptom observation and not on physical tests). The mapping of the human genome helped drive my understanding, as it was discovered that gene potentials are variable, meaning that one's metabolic rates can vary and be more or less dependant on specific nutrients. It was also discovered that genes can regulate other genes, and it was likely we were looking at multiple players, rather than just an action of one or two, and we were dealing more with a spectrum rather than a specific illness. The MD we worked used standard and private lab tests to give us a better working picture of my son's metabolic pathways and requirements. He gave us nutrient suggestions that were similar to the EMPower formula, but were more tailored to his needs. He also addressed absorption, immunologic and mitochondrial issues, all of which have allowed us to taper and stop using medications about 3 1/2 years ago, after being on a 5 to 6 med combo for a couple years.  I didn't expect to see a day in his life without meds, once he had started. So, I guess the story here is, have Hope. Meanwhile, in the 'now' time, the best you can do is make choices based on current need, expectation, and gut feeling, knowing it's a work in progress.

Here are some links tying low muscle tone, mito issues, bipolar together:

http://www.devdelay.org/newsletter/articles/pdf/356-how-nutrition-impacts-muscle-tone.pdf

http://www.bpkids.org/connect/forums/complementary-and-alternative-medicine-cam/micronutrients-appear-beneficial-for-bp-an

http://www.mitoaction.org/blog/the-dosing-debate-coq10-and-creatine-mitochondrial-disorders

http://wap.mcmanweb.com/mitochondria.html

http://pn.psychiatryonline.org/content/42/19/18.2.full

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1863554/

http://www.ncbi.nlm.nih.gov/pubmed/14980699

--

Darryl - parent volunteer, dad to
Levi, 11, stable using supps and diet exclusively since June 07. Previously treated and stable with med combo inc. lithium, 900mg seroquel, and small amounts of risperdal, luvox and focalin after being dx'd at age 3 1/2.

I want to say that my younger daughter diagnosed with schizoaffective showed signs of mitochondrial dysfunction and takes supplements for that. In fact, one researcher found that some cases of "schizophrenia" can be caused by defective mitochondrial functioning (which seem to me that the resulting brain dysfunction should no longer be called "schizophrenia" in those cases. Some would argue that the stress of the mental symptoms cause the mitochondrial dysfunction to begin with, but some of us have children who did not develop symptoms from a mental problem to begin with - no abuse. No trauma. But indeed, the brain symptoms are traumatic. Regardless, there does seem to be a vulnerability to stress involved.

Here is some more reading:

Mitochondrial Dysfunction & Psychiatric Symptoms

The Stress Connection: Meeting Hormonal, Nutritional and Hormonal Needs

Edited to add: 

And two BOOKS you might want to look into:

Healing the New Childhood Epidemics by Kenneth Bock, Cameron Stauth
The UltraMind Solution by Mark Hyman

--Jeanie aka "Naomi"
It's Not Mental
Older dd: formerly(?) teen-onset bipolar: After over 13 years - finally STABLE off meds for a couple years ! Treated: Sleep, Candida, food sensitivities, nutritional needs, low-ish thyroid hormone. Now fine on just the diet changes and higher thyroid levels.
Younger dd: formerly(?) Childhood-onset schizoaffective, TS, OCD with disabling migraines since infancy. Also off antipsychotic and meds for migraines (5 years) . Stable - no hallucinations. Treated for multiple endocrine problems, food sensitivities, nutritional/mitochondrial needs, gut issues, sleep issues.