tag:blogger.com,1999:blog-2600278351249979209.post7800439640445374740..comments2023-06-22T04:20:49.280-07:00Comments on happy being trevy: another Acthar waiting gameDanielle http://www.blogger.com/profile/04484341169494632974noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-2600278351249979209.post-65466481135838833252009-11-08T18:57:56.724-08:002009-11-08T18:57:56.724-08:00OUCH!! Girl, you threw some daggers in that letter...OUCH!! Girl, you threw some daggers in that letter! If I was that guy, I would have been hopping a plane and hand delivering that stuff. Remind me to never make you angry. I'm so thankful that we did ACTH before all of this mess started....especially since it didn't work!!! Thank you for being such an advocate for IS families!! xoxoMonica~ James~ Connorhttps://www.blogger.com/profile/02401218928219589164noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-31575164481642560582009-11-06T19:42:07.802-08:002009-11-06T19:42:07.802-08:00Sick...Just SICK....As I have said before, it is j...Sick...Just SICK....As I have said before, it is just a "racket"...<br /><br />You, sweet girl, are the epitome of a true advocate....Thank God for you....<br /><br />You are amazing....<br /><br />CyndiColbyhttps://www.blogger.com/profile/05100340319951092104noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-26432580340462179822009-11-06T15:13:00.792-08:002009-11-06T15:13:00.792-08:00You go Danielle!!! It is so crazy!! You never kn...You go Danielle!!! It is so crazy!! You never know what words might make someone think a little bit harder. It NEVER hurts to try. You are one amazing mommmy...<br /><br />kisses for Trevy...<br /><br />sheilaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-82183377018075005822009-11-06T11:38:09.301-08:002009-11-06T11:38:09.301-08:00Incredible!
Erin M.Incredible!<br /><br />Erin M.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-33512966122783974092009-11-06T10:25:14.555-08:002009-11-06T10:25:14.555-08:00Maybe I spoke too soon... looks like the earliest ...Maybe I spoke too soon... looks like the earliest we'll have it is tomorrow. I told everyone yesterday that if it didn't go out yesterday we wouldn't get it today because we don't live close to a major airport. They kept saying they could "same day" it to us, and I told them it wouldn't work. <br />At noon their time today they still hadn't sent it, and sending it "same day" would get it here at 5am tomorrow. Still don't have confirmation it has been sent, although they are working on it and I should hear soon. So, looks like tomorrow instead of today...SupermomE13https://www.blogger.com/profile/11305105357197956694noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-41978633477511053172009-11-06T10:09:47.521-08:002009-11-06T10:09:47.521-08:00Danielle, can I repost this? My family had struggl...Danielle, can I repost this? My family had struggles with insurance covering ACTH too. Fortunately, ASAP and NORD somehow came through for us without too much hassle.Meganhttps://www.blogger.com/profile/02906755193444437549noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-86485765719498402412009-11-06T07:40:03.589-08:002009-11-06T07:40:03.589-08:00I am always horrified to read such emails. And I a...I am always horrified to read such emails. And I always send a silent prayer that we had been so much luckier getting ACTH for Reva.<br />I have no idea how to go about it, but can't we, the IS parents, start an online petition or something..? Anything at all...?Mom Next Doornoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-28409593090048615012009-11-06T07:06:43.694-08:002009-11-06T07:06:43.694-08:00You wrote me while Trevor was recovering just hrs ...You wrote me while Trevor was recovering just hrs after his surgery, Michelle Mother of baby kate w IS. I just wanted to say I love seeing those kisses(video), makes me so happy!Baby Kate is seisure free right now and like you, enjoying but afraid they will come back. I am living in this glorious moment. thanks for sharing your words.Michellehttps://www.blogger.com/profile/00170923516313226913noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-54429383270939888532009-11-06T05:06:11.096-08:002009-11-06T05:06:11.096-08:00People earn bonuses, Questcor has done nothing to ...People earn bonuses, Questcor has done nothing to earn bonuses.<br /><br />It makes me sick that a company and staff making as much as they do, can't find a better system. Maybem if they get FDA approval, they'll be forced to set up a system similar to Lundbeck?JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-82016555098609968582009-11-06T04:56:39.262-08:002009-11-06T04:56:39.262-08:00Danielle, remind me to never get on your bad side!...Danielle, remind me to never get on your bad side!! :) <br /><br />Glad to see that you are still going to bat and emailing this horrible company on behalf of other families that are fighting for ACTH. It's downright absurd that they make it so hard to obtain this drug even after the doctor states it's medically necessary to have.<br /><br />Praying that this family gets the ACTH before the weekend and that it actually helps their child. <br /><br />What a nightmare!Adestahttps://www.blogger.com/profile/08255048845212923176noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-52016910842437068582009-11-05T18:26:38.719-08:002009-11-05T18:26:38.719-08:00Incompetence at it's best. These guys haven&#...Incompetence at it's best. These guys haven't a clue how to run a business beyond jacking the price up to ridiculous. For this they can collect a huge bonus and have no problem sleeping at night.<br /><br />Lundbeck has managed to enter the US market without a hitch and parents have been praising the ease of getting Vigabatrin. I guess Questcor can expect another large revenue drop next quarter. Can't wait to see those bonuses dwindle to nothing:-)<br /><br />Erin M.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-59925881176152165042009-11-05T17:26:39.317-08:002009-11-05T17:26:39.317-08:00You're a good woman Danielle.You're a good woman Danielle.Sineadnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-81414678975801146762009-11-05T17:01:42.644-08:002009-11-05T17:01:42.644-08:00I love you Danielle! THANKS!!!! :)I love you Danielle! THANKS!!!! :)SupermomE13https://www.blogger.com/profile/11305105357197956694noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-61020549555466784642009-11-05T16:56:51.146-08:002009-11-05T16:56:51.146-08:00I'm glad you are fighting for the good guys! ...I'm glad you are fighting for the good guys! Your words are like daggers (they break my heart and then some!) and would work on me if I were the CEO of Questcor. :) Keep fighting the good fight. I wish there was something we could do. I fear this may be our fight sooner than later unfortunately and it scares me to death. I'm so happy I have people like you on my side. <br />TriciaNoah's Momhttps://www.blogger.com/profile/04701210698627810443noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-40077874005675628442009-11-05T16:49:08.704-08:002009-11-05T16:49:08.704-08:00The worst part is this is twice in one week!!! Qui...The worst part is this is twice in one week!!! Quinn (see link on Sophies blog) had issues getting their ACTH too!<br /><br />It's BS. Families shouldn't have to deal with this on top of everything else!JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.com