honestly, we haven't noticed much of anything. He was pretty mild/just diagnosed when we started it all. Really the only thing he was doing was the tippie toes and I honestly don't know if that resolved because of the steriods, braces, or ptc124 or a combination of all. We were told in the beginning we might not really notice much change because of where he was at with progression. BUT, if it slows it/stops it, then I would be thrilled.
My name is Damien Lynch. I live in Tipperary, Ireland. Our son Dylan is 6 years old and was diagnosed two years ago. I'm really interested in some of your comments on Idebenone!! It sounds great. Is it expensive to ship to Ireland? Interested in giving it a go. Dylan is on steroids and vitamin D supplements.
hiya clare...dylan is on 15mg of prednesol daily and calcichew tablet...takes them dissolved in a little water and juice and takes them grand thank god.. have noticed him having lot of temper tantrums now for the past few days and we were advised that this might happen...but to see dylan being so angry and frustrated is heartbreaking especially as he was so placid and good humoured before he started on the meds...have also been advised by occupational therapist and physiotherapist to look into getting wheelchair for days out or long journeys etc for when he gets tired so have to physche myself up for that now...hows things ur end?
hiya clare...yeah it was really interesting to see the different levels of duchennes in dublin at the skin biopsies last week...but did you notice anything else? i found all the boys who were both in and out of the wheelchairs seemend so happy and content in themselves...i thought that i was the only one that noticed that but another mother said it to me also...dylan doing ok at the minute...has just had his muscle biopsy and is currently on steoroids...is having terrible mood swings though as result of the steroids...hows lewis doing and how you doing yourself?
hi clare thanks for your comments. I have not joined action duchenne but i will do like you say it is so overwhelming with the appointments etc that you dont seem to have time for anything else very difficult times but at least i am having some good days so that is good. Yes the resesrch and trial seem to be going well so that is exciting.x
hi claire...things ok with us...all going well so far so fingers crossed it stays this way for long time....hows all with you? hows ur little boy doing? we have an appointment with genetics on 27th of this month so will ask them then bout dylans skipping etc..
Thanks for the welcome Clare! It is nice to meet you. Wish it was under better circumstances. My husband has been on this site for over a year and so now I am joining.......not sure what took me this long but I am glad I joined. Some days it is fairly overwhelming thinking about things so this site should help with that.
hey clare to be honest i still dont know what dylans mutation is...he had a genetics bllod test back a few months ago in crumlin hospital in dublin and im still waiting on the results...really did not think that it would take this long but was on the phone to consultant last week and they said they will be in touch as soon as possible...the cutbacks going on in the health service is totally disgraceful but believe you me i will fight tooth and nail to get dylan everything he needs and deserves...am also still waiting on the muscle biopsy...has lewis had one of these done...dylan eats very well so no worries on that front...loves his spuds and vegs and meats etc..he is also very active and never once complains of tiredness etc..he is such a happy little boy and all this makes it so unreal and unfair...
hi clare thank you so so much for taking the time to get back to me...ive just found out about this site yesterday so still trying to find my way around it...like lewis, dylan too has started to ask why his friends can run faster than him and why he is falling to his knees so much..i am completely devastated clare also..im feeling so helpless and alone and just dont know which end of me is up at this stage...
hi clare hows things...have just become a member of this site and thought i would say hi...im from ireland and my son dylan has recently been diagnosed with duchennes...hope to maybe hear from you ...regards