Hoping for the worst

Samantha had her MRI on Wednesday afternoon and was not able to wake up until the next morning at seven. (It was a little freaky.) We got a C.D. copy of the MRI on Wednesday and got home and started checking it out. Everything structurally looked fine (according to the technician's notes- I'm not claiming to be an expert). In addition to the standard MRI, the neurologist had ordered a "spectroscopy" which is done with the same machine, but it's a way of checking what levels of chemicals are present in the brain. The note regarding this scan said that she had a decline in creatine which could indicate a creatine deficiency state. He mentioned specifically a condition called Guanido acetate methyl transferase deficiency. I quickly did some reading up on this and here is my summary.
Creatine is a major source of energy in the brain, helping the brain work in general (yes, same stuff as body builders take). The specific deficiency mentioned shows the following symptoms in children: developmental delays from birth (not "she developed normally till 18 months and then regressed"), major speech delays and seizures. Pretty much Samantha to a T.
This is a genetic condition. It is pretty rare and occurs when both parents have the recessive gene and both give the child that gene (like two brown eyed parents having a blue eyed baby). This deficiency was only recently discovered. So why am I hoping for my child to have a rare genetic disorder??? Because the final adjective describing this deficiency is "TREATABLE".
Of course this is just speculation by a technician viewing her MRI. I haven't wanted to get my hopes up too much (or anyone else's). I have been calling the neurologist's office for two days driving them crazy to get the doctor's opinion. They finally called late this afternoon and want us to come in Monday for a urine sample to be sent to a special lab that handles genetic testing and they are setting up an appointment for Samantha to see the genetecist that specializes in metabolic issues as soon as possible.
All of this information was conveyed to me very delicately as though the physician's assistant was scared that she was going to drive another poor mother to tears. Finally I said "we've seen the report. Are these tests to pursue the possibility of the creatine deficiency disorder mentioned?" And she very tentatively replied, "Well, yes... but the good news is that it's treatable." My mind said "woo hoo" and my mouth said something more socially restrained and I hung up.
Treatment is mellow in the sense that it's totally safe. It involves oral supplementation of creatine which has no side effects, but it involves the most difficult diet I have ever heard of. The diet is to eat nothing containing arganine. Arganine is an amino acid found in:

• Animal sources: dairy products (e.g. cottage cheese, ricotta, milk, yogurt, whey protein drinks), beef, pork (e.g. bacon, ham), poultry (e.g. chicken and turkey light meat), wild game (e.g. pheasant, quail), seafood (e.g. halibut, lobster, salmon, shrimp, snails, tuna in water)
• Vegetable sources: wheat germ and flour, buckwheat, granola, oatmeal, nuts (coconut, pecans, cashews, walnuts, almonds, Brazil nuts, hazelnuts, pinenuts, peanuts), seeds (pumpkin, sesame, sunflower), chick peas, cooked soybeans

So, basically vegan plus gluten and casein free, plus a few more things. Of course, I will be happy to put her on this diet;)
The concept of "we're going to an MRI and may find a cure today" had never even entered my mind. I was thinking the closest thing to that would be, "there's a huge tumor that needs to be removed" or more likely, "her brain is full of glucose which is causing her inability to focus on the words coming out of her mouth. We think you should put her on ritalin". Really I expected nothing.
I am scared that I have my hopes up for nothing, but this is the most real thing we've learned about Samantha and I am going to keep my hopes up for now. I feel like these seizures had their sudden increase for a reason and were truly a blessing in disguise.