Thanks Damien! I guess it feels lonely in respect of the medical support here, it just felt like they stuck a label on Dylan, good luck and that was it. No mention of research going on, supplements etc... At least you can get all the info you need on this community! Would you mind me asking where you get the idebenone from and what would be the import tax here in the Republic? Dylan is doing great but i really want to get him on it asap. Thanks for the comment anyway, take care, Anna
Hi Damien,it is worth it,i would not be without it for Lewis.If you have family or friends in the states it is better to get them to order it to their home address and post it to you than ordering from the supplier to Ireland.The import duty is high.I learned the hard way,charged me 35 quid when they arrived at the door.If they mark the package as vitamins there is no probs .Costs about $150 for 4 months supply.Buy 3 get one free.I am actually thinkin these boys do not need as much steroid when they take idebenone ,but i will let you know as Lewis is only recently started defalzacort.He was on 18mg ,but have taken him back to 15mg,and i thunk he might go back to 12mg.Bless the web ,otherwise this would be a very lonely road for us all,take care Clare
I read your post that Dylan has a large deletion. My son Wyatt, will be 4 in August. He also has a very large deletion. Definately doesn't seem to be a common thing in the DMD world. He has deletion of 18-41. Supposedly it doesn't make a difference in progression, but it does knock us out of therapies for exon skipping. Looks like utrophin is our best bet. I hope all is well with your family. Just thought I would drop you a line, seeing our boys have similar deletions.