"Dear Rhis,
Please provide the update on duplication research. When do we can expect the treatment. Sir, Please save our sons.
Thank you."
-
Dalibor Randjelovic
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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
Latest Activity
Sai Chand. Gurujala replied to Dalibor Randjelovic's discussion Is it dr Kevin Flanigan`s research hope for our boys with duplication? in the group DuplicationsSai Chand. Gurujala replied to Dalibor Randjelovic's discussion Is it dr Kevin Flanigan`s research hope for our boys with duplication? in the group Duplications"Sir,
Any updated status on Duplication research. Please share the update.
Thank you."
Dalibor Randjelovic replied to Nadja's discussion Idebenone"Hi Nadja, I read this post, we are thinking to order from this supplier but I wanted to hear your expirience or anyone else whose child using idebenone of hbc product.
Thanks in advance.
Randjelovic"
Dalibor Randjelovic favorited Char Burke's discussion Calling all duplications - and checking in on status of where our guys are at
Moein replied to Dalibor Randjelovic's discussion idebenone and dark urine"Absolutely,it is not something dangerous.It is just a pigment"
Nadja replied to Dalibor Randjelovic's discussion idebenone and dark urine"Hi!can you speak German?
At monday i am in have an appointment in the biggest neurologist clinic in Germany,and i will ASK them your question.then i can write you what they say.how is your son doing?max was four in may!best wishes Nadja"
Dalibor Randjelovic replied to Dalibor Randjelovic's discussion idebenone and dark urine"Thanks for reply.
I am giving him mixed with yogurt in the morning (open the capsules and put in yogurt with a little honey, it looks like icecream). Dark urin becomes with increasing dose of idebenone. After my doubt on this I tested him twice for…"
Nadja replied to Dalibor Randjelovic's discussion idebenone and dark urine"Hi marija,our son takes idebenone since 8 weeks,300mg per day.at the first times the urin was sometimes very dark,but now and the Last time it was normal.how do you give hin the idebenone?nadja"
Dalibor Randjelovic posted a discussionidebenone and dark urine
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 not testing . Our doc suggested us to slow down with activities and to drinking much water. We do it, but his urine is still dark ( with brown and red pigment). In that period we are switching him from 150 to 300mg of idebenone ( which we are giving him from his 2 y). We did one test, we…See More
Dalibor Randjelovic replied to Joshua's mom's discussion Blood in urine"Dear parents, I need some advice about mioglobinuria. My son is 3,5 year old. Around already 3 weeks he is having a dark urine. Our doctor neurologist suggest us to giving him much water and to slow down daily activites, but and after that his urine…"
Dalibor Randjelovic favorited PPMD's blog post Clinical Development of HT-100 for Duchenne Has Resumed
Alissa Braga replied to Dalibor Randjelovic's discussion Is it early to start with physical therapy with boy of 18 months?"My son started doing PT pretty young might have been 16 months, we knew he had DMD before birth. He was having troubles getting up to a stand and floor to stand and getting up on chairs or couch. It was once a week we would go and he…"
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
Comment Wall (6 comments)
- At 5:08pm on June 21, 2012,
Peter said… 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.
- At 11:59pm on June 18, 2012, Tanja Petrovic said…
poslala sam Vam poruku, u svakom slucaju jos jednom mobilni 064 26 08 669.
Nice to meet you, and thanks for your reply.
- At 8:49am on June 4, 2012, Johnna Drazetic MDA RN said…
- Dolibor so nice to meet you, my husband is from Bosnia
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.
- At 9:20am on June 1, 2012,
Kathy said… 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.
- At 1:33pm on May 10, 2012,
Regina said… 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.
- At 4:09pm on April 24, 2012,
Slavica said… Pozdrav za tebe i hvala za prijateljstvo
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