絕望: My son is diagnosed with RP - Please Help!!!

My 7 years old son was diagnosed with RP (Retinitis Pigmentosa) at Beijing University Medical Center in China. I showed his exam results to the opthalmologists here in California and was told that my son will be blind by the age of 20. I am heart-broken...

Symptoms:
1. Slight difficulty to see at the night;
2. Severe reduction of the field of vision (Less than 30 degree now). Only center vision now.
2. Nearsightedness: 0.2 and 0.1 in both eyes. Corrected vision w/ glasses: 0.9 and 0.8 (200 degree in classes)

Family history:
1. My mom and my maternal grandpa (and his sister) have RP.
2. My mom's other 5 brothers and sisters (and their children) are normal.
3. No other family history on either side.

Questions:
1. Anything I can do to save his vision or delay the time to be blind?
2. Should I bring him to the US for diagnosis and treatment?
3. Can I donate one of my eyes to help him? I know that it is a silly question, but I am the mom... Does eye or eye tissue transplant help RP?
4. Will it help if he start to take Vitamin A? How much should be the dose? 15,000 IU or 1,500 IU? I heard that high dose of Vitamin A may have severe side effect on young children.
5. Any other suggestions?

Thanks a million!!

所有跟帖： 

• Treatment(ZT from Wikipedia) -huangme- ♀ (1307 bytes) () 03/03/2008 postreply 08:48:08

• 这里有很多相关信息 -G6PD- ♂ (45 bytes) () 03/03/2008 postreply 08:51:11

• My heart and prayers go with you. The relative question is -A_Momy- ♀ (236 bytes) () 03/03/2008 postreply 08:58:43

• Agree, do not take the U.S. doctor's forecasts too much -LaoNanren40- ♂ (0 bytes) () 03/03/2008 postreply 09:03:27

• 假如真的有这一天，如果孩子能以平常心接受，你就是一个伟大的妈妈 -不加分析- ♀ (40 bytes) () 03/03/2008 postreply 09:02:28

• ZT My heart and prayers go with you -了.了- ♂ (52 bytes) () 03/03/2008 postreply 09:09:36

• TMD， 听着像F L G -G6PD- ♂ (0 bytes) () 03/03/2008 postreply 09:13:03

• you knocked me out! guess you never paid any sympathy to -A_Momy- ♀ (84 bytes) () 03/03/2008 postreply 09:19:07

• I do not want to say anything. -了.了- ♂ (0 bytes) () 03/03/2008 postreply 09:20:25

• 你 -坚果- ♀ (0 bytes) () 03/03/2008 postreply 09:20:30

• 气愤在这情况下来传教。 -G6PD- ♂ (0 bytes) () 03/03/2008 postreply 09:22:15

• 有一句话 -坚果- ♀ (183 bytes) () 03/03/2008 postreply 09:30:58

• 为楼主祷告我支持 -G6PD- ♂ (14 bytes) () 03/03/2008 postreply 09:33:26

• 祝福！多了解各种option,好做educated的决定。另外， -4月芳菲- ♀ (83 bytes) () 03/03/2008 postreply 09:15:04

• 另外，建议看这本书，作者有类似的经历 -了.了- ♂ (526 bytes) () 03/03/2008 postreply 09:18:19

• 我觉得没有医嘱乱吃药绝对不是个好主意. -胡涣- ♂ (102 bytes) () 03/03/2008 postreply 10:22:43

• 珍重！现在离２０岁还有１３年，也许未来医学发展能 -毕小珠- ♀ (304 bytes) () 03/03/2008 postreply 10:25:46

• John Hopkins Medical school -2horse- ♀ (294 bytes) () 03/03/2008 postreply 11:33:34

• Thanks to you all!!! -Momof4- ♀ (0 bytes) () 03/04/2008 postreply 09:17:05