-
Dalibor Randjelovic
- Male
- Nis,Serbia
- Serbia
- Featured Blog
- Discussions (17)
- Events
- Groups (5)
- Photos
- Photo Albums
Dalibor Randjelovic's Groups
Dalibor Randjelovic's Discussions
idebenone and dark urine
Started this discussion. Last reply by Moein Aug 1, 2014. 4 Replies 0 Favorites
Hi, in last one month we notice that is urine of our 3,5 yr.old son becomes darker. First we checked urine infections and that is ok. We could not check myoglobinuria because our local laboratoria do…Continue
duplicaton of exon 8-13 (out-of-frame)
Started Jun 13, 2012 0 Replies 0 Favorites
I would like to know if anyone's child has this duplication and how they are progressing? And if you can describe me your child's development from birth and when they started the first symptoms?Continue
Is it early to start with physical therapy with boy of 18 months?
Started this discussion. Last reply by Alissa Braga Jun 12, 2014. 7 Replies 0 Favorites
Is it early to start with physical therapy with boy of 18 months? He doesn't has any symptoms yet, started to walk from 15 monts, his muscle tonus is ok, but we want do to something preventive. So if…Continue
Dalibor Randjelovic's Page
Profile Information
- About my family:
- We are family from Serbia ( Europa ). Our son was born 15 th Dec. 2010.
A random blood test at his birth were found very high values of the CK enzyme, that was the reason of suspicion on some muscular disease. After a year of testing the genetic analysis showed that he has duplication of 8-13 exons. That was shocked to hear because there is no history of dmd in our family.
He was a baby and all the other babies, he began to walk with 15 month, now he just run around and explore the world around him. He is very smart, mad and lively boy.
We live in a small country where doctors are not informed enough, we want to get the best possible informations and advice to be able to do everything possible for our little boy.
Our life goal is to find a cure for Duchenne muscular dystrophy, so our boy can enjoy in his life for many years to come.
- Age(s) of child(ren)/individual(s) with Duchenne:
- 0-3, 4-6
- City:
- Nis,Serbia
© 2020 Created by PPMD.
Powered by
Badges | Report an Issue | Privacy Policy | Terms of Service
Comment Wall (6 comments)
You need to be a member of PPMD Community to add comments!
Join PPMD Community
HI
My son is 21 month of age now. I started Q10 as soon as I got confirmed diagnosis. It was 30 mg. Later reading many publications and recommendations I switched to Idebonene 45 mg at first later 150 and now he gets 300 mg. I asked docs and didn't get any definitive advice. I decided the dosage on the article about Q10. The link to the article http://www.distrofiamuscular.net/coq10a.pdf My son's weight is now 14 kg so basing on the dosage in this study he should get 280 mg of Q10.
My son doesn't have any evident signs of DMD. As I know he is affected by this disease I recognize his every fall as a sign of weakness to his muscles. He attends physiotherapy once a week now. The physio is rather a play he moves very much, can't stay in the same placy for a while.
Apart from that he gets vitamin D.
poslala sam Vam poruku, u svakom slucaju jos jednom mobilni 064 26 08 669.
Nice to meet you, and thanks for your reply.
He and his family have been here for about 41 years.
I did som research for your son, I see your orrery far form Belgrade
But your going to have to make the trip and soon.
Early treatment is key ok. Belgrade children's hospital
Is yor best bet, I couldn't find their number from here sorry.
You want a neurologist that specializes in muscle problem.
If the by chane don't have anyone familiar in treating muscular
Dystrophy they call these people.
Institute of neurology clinical center of Serbia
Dr Subotica 6
11000 Belgrade Serbia
Phone 381 11-30644247
Zsmd.yu@sezampro.rs or aritic@eunet.rs
They treat ALS which is a muscular dystrophy they
Can at the very least get you to the correct doctor
For your son. They may even know of one closer to
You! God bless and take care hope this helps
Don't wait ok. Ive taken care of MDA kids for 13 years
They do yery well with early treatment. And you and you
Wife need genitic testing to see who the carrier is.
It usually runs on the mothers side passed onto
Boys. In case your doctors didn't tell you that.
Again take care.
Welcome. Did your son just get diagnosed recently? PPMD is a great recourse. There are many groups of Facebook as well, like Parents of Duchenne, Duchenne Army, and more.
I'll keep you in my prayers, and hope that your son will do as well as ours has been. There deletion is similar, and Jordan is 10 and, while he struggles with running and stairs, is otherwise a very normal boy. We strive to keep him as well as possible until the medicine catches up. Jordan also walked by 15 months, and we had no idea anything was wrong until he was 6. Let me know if I can answer any questions for you.
Pozdrav za tebe i hvala za prijateljstvo