PTC 124-2b Clinical Trial

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PTC 124-2b Clinical Trial

Various issues re: PTC 124 Clinical Trials for current or prospective participants worldwide

Members: 31
Latest Activity: May 1, 2018

Discussions

PTC124 now has a name...

Started by Paul Johnson. Last reply by Paul Johnson Feb 3, 2009. 1 Reply

PTC124 in the courts

Started by Paul Johnson. Last reply by Paul Johnson Dec 22, 2008. 4 Replies

Is the 2b Trial Full?

Started by Paul Johnson. Last reply by brad stringer Dec 4, 2008. 1 Reply

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Comment by Erica on February 18, 2009 at 6:33am
That's great! Hope everything goes smoothly!
Comment by Barb Rush on February 17, 2009 at 7:47pm
GOOD LUCK!!!!!! How is it going????
Comment by Paul Johnson on February 17, 2009 at 4:56pm
We head down tomorrow for our first 6 month followup appointments.
Comment by Barb Rush on January 22, 2009 at 12:52pm
I tried everything even Strawberry milk, but i couldn't get him to try it.
Comment by Donna on January 22, 2009 at 12:49pm
just one more thought - have you maybe even tried like a Soy Vanilla flavored milk? or maybe even coffee creamer?? maybe it's just the vanilla flavor that he doesn't like?? I know they said the powder has a vanilla flavor to it. Quite honestly Barb, if this was my other son - we'd be in the same boat as you.
Comment by Barb Rush on January 22, 2009 at 12:46pm
thanks, everyone it is just so agrovating that I can't get him to take it. of course out of 185 boys on drug for the trial mine has to be the one that does not want to take it. OH joy. Just par for the course......
Comment by Donna on January 22, 2009 at 12:33pm
Our son Kyle (5) started the PTC124 study on January 6th and so far so good (diagnosed summer of '08 - extremely suprised and obviously devastated). His symptoms were so mild to begin with that quite honestly we haven't seen much change when we originally went on steriods (deflazacort) and now on the study drug/or placebo. And maybe it's too early to tell with the study. Reading through this discussion forum, I will say the biopsy was not pleasant - FOR ME; but Kyle was a trooper. He was a totally different person when he woke up - not one that I'd refer to have daily - but I was prepared by the nurses that he could be very upset - and he was. My husband was not able to be there but we had the recovery nurse give Kyle a stuffed animal from the Bolt movie immediately following surgery from his dad and he was just in heaven. Maybe it's his young age, but he just goes with the flow. I talked to him a few times about the "procedure" and all he really cared about was that he wanted his scar to look like a lightening bolt (which apparently were in the surgical orders but none the less, we did not get a lightening bolt). Kyle is not "thrilled" with the powder at times, but again he is pretty much a go with the flow kind of kid and takes it in stride. Our motto is that the faster you drink it, the faster its gone and the faster you can go back to playing. As far as the ankle monitor - HE actually makes sure he has "SAM" on each morning when he has to wear it. And as far as the consideration to get in the study or not??? well, in our opinion, it was what was best for Kyle no matter how much it might screw up our schedule. Luckily we are only 1 1/2 hrs from the study site, our employers are SO supportive, and Kyle has won the hearts of so many people down there already (particularly at the "hot chocolate" stand), that, he just "goes with the flow" - a star wars character here and there helps alot too :-).. Barb, I'm so sorry that it has been rough on you; but you tried and that's all you can do. Wish you all the best.
Comment by Paul Johnson on January 22, 2009 at 11:48am
Elliott's been on the drug\placebo for coming up on two weeks. SO far so good. He's been a champ taking it (sorry Barb...) and no complaints about anything. No inclination as to whether we are placebo or PTC124.
Comment by Barb Rush on January 13, 2009 at 5:18pm
Well everyone, we are done. I can not get Brenden to take the med no matter what I do. So we are going down for our exit appt tomorrow. Oh well we gave it our best shot.
Comment by Barb Rush on December 14, 2008 at 11:41pm
Thanks Angela, Brenden is 5 and yes. Dr. Finkel talked to him about it there and he also wanted tot talk to Brenden on the phone but Brenden did not want to talk to him about it. I think we are going to give up. I could not get him to take anyof it today. I tried taking his prizes away yesterday and told him to day that he could have them back if he drink it, if not I was taking them back he said go ahead. AAAHHHHH!!!! I tried water, milkand chocoalte milk. I give up. I don't know what else to try. I am going to call Dr. FInkel tomorrow and see what he says.
 

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