Có kết quả xét nghiệm gen của bé nhà chị chưa ạ?Hay chị thử yêu cầu FV gửi đi phòng xét nghiệm Biomnis xem sao.Lúc trc thằng nhỏ nhà em cũng gửi đi Biomnis đó.
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.
Yes, it is very hard right now. But slowly it will get better as you are able to accept the situation.
Just think of how joyful your boy is, you must be doing something very good! At school my sons' teachers always tell us about his big grin and always ready for a laugh.
Trinh Nguyen's Comments
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Happy New Year Trinh to you and the family.
Let's see what Monkey business this year brings!
Andrea
I will certainly share what I learn after the trip to see Dr. Wong. Have a great day.
Hi Trinh,
Certainly. I am looking forward to connect with you. Which district are you in Saigon?
Hi Trinh,
Yes I am.
Thank u, I hope DMD Vietnam connect with the world community DMD
Hi chị Trinh,
Em đã được kích hoạt thành viên chính của PPMD rồi à.
Thank you Trinh, I will tell Simon that you wish him a happy birthday all the way from Vietnam! He will be excited to hear that.
You have a kind heart, and your words have touched me. Thank you Trinh.
Hugs to you and your family,
Andrea
Gửi chị,
Có kết quả xét nghiệm gen của bé nhà chị chưa ạ?Hay chị thử yêu cầu FV gửi đi phòng xét nghiệm Biomnis xem sao.Lúc trc thằng nhỏ nhà em cũng gửi đi Biomnis đó.
Vân Anh
Trinh,
Bones and spine are strong. He slipped in the bathroom tonight and fell, but he will luckily only have a bruise.
Need new braces for night time because they start to be too tight on his feet.
He told us about a girl that he likes in his class! She helps him carry his school bag. I hope she remains his friend.
Take care dear Trinh.
Andrea
Hi Trinh,
Good to see that you found someone in your own city for support and advice.
I hope that helps you to feel less alone.
Andrea
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.
Vân Anh
chào chị,
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?
Vân Anh
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.
Andrea
Hi Trinh,
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.
Keep the faith Trinh.
Andrea
p.s. Both your kids are very sweet.
Dear Trinh,
You may ask me anything, and I will answer whatever I can.
Everyone here at PPMD is very supportive, so you have found the right spot.
mz_cleary@yahoo.ca
Take care of yourself too.
Andrea
Hi Trinh,
Beautiful family you have.
Yes, it is very hard right now. But slowly it will get better as you are able to accept the situation.
Just think of how joyful your boy is, you must be doing something very good! At school my sons' teachers always tell us about his big grin and always ready for a laugh.
Andrea from Montreal, Canada
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