thx for the feedback. how are you doing.

i stayed awake all night reading about enzymes. i did come across one reputable article that said pancreatic enzymes can inhibit cytochenes. this is the reason the myelin sheath in the brain breaks down as the cytochene has been inhibited by psychosine. psychosine, it is believed is not actively doing anything, it's rather neutral but it's paired with the cytokine (whichever way you spell it) on its way back to the brain after digestion (i'm assuming it doesn't happen at the encephalitic first and perhaps i'm wrong because if the sheath is damaged and it's sending wrong messages, misfiring and not firing as neurons die then i suppose it could be sending a mutation of sorts). the path of digestion is 3-way - encephalitic (brain), gastric (stomach), and pancreatic (pancreas). it is recorded as genetic but i'm thinking that perhaps that mutation could have also been activated by something else, a flu, an infection. she was brought to the doctor in the 7th month with an ear irritation that kept her awake around the clock. the doctor said she was fine and her mom didn't question it as, in the doc's office she made a complete turnaround and her baby was laughing and carrying on happily as a well baby does. this baby is just so beautiful and although losing muscle control, she is still very alert and very much herself so it's time-sensitive and we are all just hoping against hope that someone can put the right finger on it and that someone else knows how to treat her. with cell stem implants being so advanced today, we are probably lucky it's happened in these times as in the past, i believe before the late 70's it was referred to as failure to thrive. she passed all the milestones up til the 6th month but there was no real rapid onset so not really noticable till around the 8th when she couldn't lift her own head or sit up anymore, she is now 9months and has been diagnosed with leukodystrophy for 2 wks but has not been told which one yet. perhaps the amount of myelin with an initial mri and then a later one is necessary to see if it is demyelinating and how rapidly or slowly and perhaps that's all part of the diagnosis. the slower the neurons will fire, the more demyelination is occurring and thus they can assess if there's any arrest of destruction of the sheath or gradual or rapid loss. the first would be a little miracle. tay sach's is simila. great stem cell research has been and is being done with respect to tay sach's and they are prolonging the lives of the children till 8. now the earlier the onset, the shorter the life. so it's just the opposite of what we are used to hearing. unless no symptoms have surfaced and cells have been implanted beforehand, then the outcome is a longer life but there is still neural, retinal, etc...damage.

i took biology and chemistry in high school but i was never interested in it as it was not applied to anything.never did i think for a second that mental functioning, paralysis, and death could be caused by a single enzyme. what implications does that have for eating the right diet for your dna. now i only wish i could be in a lab making every hypothesis a reality or not. it's only through trial and error and people making educated guesses about these diseases that more breakthroughs can be made. i somehow feel this is in the diet, but that's a guess. pku is in the diet and look at those thousands that are saved, who once would have been lost, by screening newborns for it.

thx for listening, it helps me to clarify and realize there are so many out there with a family member experiencing the same thing.

you take care and pls let me know about your journey.

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