Gửi chị, Thằng nhà em mới có 19 tháng thôi chị ạ, chưa có dấu hiệu gì, đi đứng vẫn tốt, FV gửi ra Hà Nội là gửi cho chị Khánh/ĐHYD đó chị, vì bên Nhi Trung Ương cũng đưa cho chị Khánh thôi. Ở Hà Nội, có mình chị Khánh nghiên cứu và xây dựng phòng thí nghiệm này. Số DT chị Khánh là 0915.958.661. Chị thử liên hệ với chị ấy có khi kết quả về sớm hơn đấy.
chị gửi xét nghiệm của bé đi nước nào vậy chị? bác sĩ ở đâu chẩn đoán cho chị vậy ạ?em thì gửi đi Việt Pháp đi phòng xét nghiệm Biomnis. Còn ở Hà Nội có chị Khánh cũng có thể xét nghiệm DNA đó chị. À, chị ở quận mấy?
Hi Trinh, Hang in there our son is 6 1/2 also. Tanner is his name he is beautiful and smart. He is our youngest of six children. I do believe we will see a different outcome maybe not a cure but something to slow this down to give our little guys a better chance. Chin up and hang on. Call me with anything 732-255-2347 Dana mom of Tanner
Some of my photos are a few years old Trinh, so he was only 7 or 8. I think Mommy needs to upload more recent pictures.! He has stopped growing because of Deflazacort steroid, and is a bit rounder in the face and tummy.
Thank you for reminding me. I will try later today. We have an appointment at the Shriner's Hospital with his orthopedic doctor today to check his bones.
I saw quickly that you added some new pictures. I will go look at them now.
Have a nice day Trinh. Try to notice and appreciate all the good little things about life, and I will do the same.
Most supplements used for DMD are antioxidants. Simon's neurologist suggested Immunocal (used to be called HMS=90 for Humanized Milk Serum here, but it is from a cow) which has the pre-cursor of the antioxidant called glutathione and is high in protein (amino acids). There is also L-arginine, creatine, Idebedone, co-enzyme Q 10, protandim, etc. You can have a look on this site, just search the word supplements and you will see all the different things people use and ask them specific questions. I don't know if the Immunocal actually does anything, but Simon is rarely sick with colds or stomach flu, which his brother who we do not give the supplement to, catches all the time. Maybe it's just individual difference, not sure. As long as I can afford it I will get it for him.
It is expensive, but you can save on shipping charges if you order only 1 or 2 shipments a year. I usually give him 2 envelopes of the powder (20 g of protein) or 3 if we missed a day. You just mix it with juice. At first he did not want it, but now he acts like it is a treat, but maybe it's just special attention to have a drink prepared just for him! I know one other boy who does not like to drink it, so the mom mixes it with yogurt or pudding.
I also give both my boys Omega- 3 fish oil pills which I have heard can help attention problems, and it is good for the heart too.
I don't know what is available to you in Vietnam or at what cost. I hope you can find something agreeable for you parents and Thuc.