Started this discussion. Last reply by Tonya Aug 7, 2010. 3 Replies 0 Favorites
Started this discussion. Last reply by Jennifer Bauer Oct 6, 2011. 4 Replies 0 Favorites
Started this discussion. Last reply by Eliane Khoury Sep 9, 2008. 4 Replies 0 Favorites
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Joshua weighs 46lbs and is almost 7 years old. He takes 150mg of idebenone and his neurologist suggested he could start taking it 2x per day now. Gavin would probably take the same original amount since the weight isn't too far off. I will add the sites I went to to find out what it does and where I ordered them from.
http://www.hc-sc.gc.ca/dhp-mps/prodpharma/notices-avis/conditions/catena_fs_fd_117672-eng.php ........... INFORMATION
http://www.smartnutrition.info/idebenone.html ........... ORDERED FROM
I hope this helps. If you have any other questions, don't hesitate to ask. He had a walk test where he walks for 6 min. and they count the steps. Before he started his walk idebenone, his steps were 222 and 3 mo. after taking it he took 397 steps. Everyone was quite impressed. Even physio is much easier! Take care.
Naomi
Nice to hear from you. Congratulations to you and your family! I love the name! You need to upload a photo or two. I need to add more photos myself but do not have time with 2 kids and job… L
Robert is doing fine so far. We do not see any symptoms in him, he might be a little slower when he runs but it is not very obvious at this point. We also want to start him on steroids at 3.5. Thank you so much for letting me know how you give it to Gavin. Do you see any side effects at this point? Any improvements?
Hinge III contains exons 50 and 51 so our boys, after having exon 51 skipped, will have hinge III missing. Some papers say that that’s a good thing…but we need to wait and see what happens in the trials…
I recently talked with Steve Wilton and asked him how soon he thinks that exon skipping can be approved (if all goes well in the trials). He said that it will take the next 2 years or so to figure out the dosing and frequency of administration. I hope they get it approved in 2-3 years. Then I asked him if starting around age 5 will be ok in terms of slowing the progression and this is what he said:
Hi Ofelia, I believe you still have plenty of time. The reason young children are not recruited is that this is still experimental and has not been validated.
It is necessary to work out doses and frequency of administration. This wil take at least a couple of years and by then I would hope exon skipping is shown to work and dosing protocols will have been worked out.
5 years will not be too late to make a difference
I hope this helps a bit
Cheers, Steve
We all have some semblance of "no hope" with lack of therapies and clinical trials. It's practically all you hear when you go to your first appointment. Not because they are not saying things that are hopeful, but because your mind easily filters and focuses on the part that is most devastating to us. I spent the first 6-9 months morning the diagnosis, as if my son was going to die tomorrow which of course is not true.
My son saw Dr. Apkon only once, though I had been in contact with her at least a few months prior to moving to Colorado and several months after the appointment. I always felt she was easy to talk to, very aware of the research going on around the world, willing to answer any of my questions or point me to the right person. She seemed like a patient advocate to me. I've heard the Seatlle clinic is not as optimal as some others in this country, but still far better then most. I certainly believe Dr. Wong's team is the cream of the crop, and willing to speak with any parent regardless if they are direct patients.
One of the best things you have going for you in Seattle, is the fact their hospitals and research staff are well known for their expertise in cardiology and pulmonology - the two most critical areas for our boys as they grow older and the DMD progresses.
I hope this brings some ease. I suggest going to check the Seattle clinic out with Dr. Apkon. It's just one visit and if you are not satisfied, you can always go back to Dr. Wong. Additionally, you are your sons best advocate. If you feel you are not getting the service you want, it is your right and obligation to insist upon it. In any medical situation, this is the best approach anyway. Let me know how it goes.
Liisa
Thank you for your kind words hun. It means a lot to me. I'm so sorry that DMD has affected you're family so much. A lot of it is just finding the right attitude and not dwelling on all thats lost. If you can find something you're good at you can concentrate on that and the rest of it don't matter. It's the brain that needs occupying lol
I'm sure your son will grow into a fine young man whatever DMD throws at us.
How are you? I hope your kids are enjoying the half way decent weather. I just wanted to let you know what's new with us. We were so lucky to be able to meet Pat Furlong while she was in town last week. She's amazing. We talked quite a bit about Wyatt's weight (16 pounds 7.5 oz. at 14 months) and she's concerned about it, as we are. She recommends that we go to Cincinnati asap so we can address the weight issue. I will let you know how that goes. I continue to appreciate all of your encouragement. Have a great weekend. ----Melissa
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