Phenobarbital levels

Hello, I'm hoping to get some insight into phenobarbital doses. We are brand new to epilepsy - my 11 year old daughter (previously healthy, strong, gifted, talented child) had an acute onset of seizures the week before Christmas 2015. She spent 2 1/2 months in the hospital - the first month in the PICU in a medically-induced coma. During that time she was given every drug known to man - and her coma was induced with pentobartibal. She was also given heavy doses of versed and ketamine. When she was finally extubated and 'woke up' from the coma, she came to much like someone with a TBI would. She had to relearn to talk, walk, eat, etc. She spent another six weeks in the hospital, rehab-ing from everything. Every test/scan/lab/draw came back negative or normal. They have diagnosed her as a F.I.R.E.S. patient (febrile-infection-related-epilepsy-syndrome) which is characterized by a sudden explosive onset and usually ends up with intractable epilepsy. If she is truly a FIRES patient, she is a miracle as she has come much farther than anyone expected. To make a long story short, she is currently on 300 mg phenobarbital, 600 mg of felbamate, a daily shot of anakinra (this is a juvenile rheumatoid arthritis drug, used anecdotally in one other FIRES patient), and the ketogenic diet. We continue to see seizures at home (we've been home for four months) but had periods of time where we went as much as three weeks without seeing a seizure. We see all types - generally tonic clonic for 3-45 seconds, with the total seizure lasting under 3 minutes - often under 2. Most of her seizures happen in the wake-to-sleep or sleep-to-wake cycle, though she had awake seizures as well. She also started having 'spells' which we determined by EEG were not seizures, but instead were pass out episodes where her body literally goes limp and she just stares straight ahead, unresponsive to outside stimuli and even pain. We were told these are more psychosomatic and a result of the stress of everything she is going through. At any rate, we have been weaning the phenobarb for a while now - every two weeks going down by 50 mg. She is currently at 100 mg and, as you might expect, it seems the withdrawal symptoms of worse as we get lower. Yesterday we had five seizures, today at noon we are up to two. This is a lot for her. I've tried to do some reading on PB withdrawals, but most of what I find are young babies withdrawing or adults who have been on it for years. Also, it seems the dosing I'm seeing from others is nowhere near as high as what my daughter has been taking. I believe the increase in seizures we are seeing are due directly to the wean, and we also have seen confusion, lethargy and mood swings. Her last EEG (when we discovered she was having 'spells' and not seizures) showed a significant slowing overall, but that didn't jive with how she presented to doctors. That made them think that a) the slowness is a direct result of the PB and b) she is compensating incredibly well as she deals with the effects it is having on her. It has been incredibly difficult with her case because it happened all at once and she was treated with everything all at once, to know what effects different meds are having, or if it's the illness/injury, or if it's hormones/puberty, etc. Apologies for the long post, but I wanted to give some background before I asked my questions. First off, has anyone experienced taking or giving PB levels that are as high as my daughter's? Second, can anyone talk about the wean experience and what changes they saw and if they improved over time? Finally, we are desperately trying to not give her any additional drugs through this process - we believe that the drugs are causing more harm than good and if we could just move her past the wean phase we might see some improvement. I'm open to opinions - her doctors have given us a prescription for Trileptol and we can have it filled whenever we want, but I'm not anxious to put her on yet another drug. Any thoughts or experiences you can share around this would be so helpful to us. So much of her case is baffling to doctors, so we are all just sort of winging it I feel. They offer their education and experience, and we offer the knowledge of our daughter and our gut instincts as parents. But it is very hard to never have any answers and to just keep guessing. Thank you in advance for your help, Natalee