Welcome and yes we have defnitely been a quite group lately. My 11 year old daughters levels last week were around 339, 453 in January, and over 1,000 when diagnosed this past fall. We ave not seen any vision change since last fall and the swelling in the center of her retinas have decreased, so is that from the formula and reduced protein, who knows.
Did you try the diet 6 years ago? The first formula Rachel tried, she could not tolerate. It was Ross Cyclinex. There is a new formula from Liverpool. It is call EEA supplement from a company called Vitaflo. She has been able to tolerate that taste. Our goal is to keep her levels between 300-400. She is suppose to eat only 15 grams protein. She probably does this 5 days a week with two off days. Cheese pizza day and Chipoltes are usually the off days hovering around 30+ grams on those days.
I am a little worried about the growth of Rachel as she enters puberty(yikes). She weighs the same(maybe a little less) than she did a year ago and has only grown 2 inches. She really likes the new skinny her.
Rachel does not have a lot of night time vision left and we are not sure what her peripheral fields are currently. They did test her, but we think she had a learning curve because if the results we acurate she would be running into things more often than she does. She does play sports, but I find it is the lare ball sports she does better at. Soccer, basketball...it is painful to watch her play softball.
Her corrective central vision is ranges between 20/30-20/70. Her biggest issue is eye fatique.
I do agree that they are treating the symptoms and not the issue. There is only one research being done currently that I know of and I think they only have 10 patients to follow. I can't find any information on this research, but Rachel's geneticist told me about it. Does anyone know anything about it?
About half of our members have introduced themselves. I am also a member of an RP sight, because that is what Rachel was diagnosed with first. Vision issues are similar.
Thanks for introducing yourself. Have a wonderful weekend.