tag:blogger.com,1999:blog-2600278351249979209.post9009546889571272874..comments2023-06-22T04:20:49.280-07:00Comments on happy being trevy: on raising awarenessDanielle http://www.blogger.com/profile/04484341169494632974noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-2600278351249979209.post-41249079474031789462009-09-25T11:59:06.474-07:002009-09-25T11:59:06.474-07:00I just read this post. I was shocked that that the...I just read this post. I was shocked that that the cost of the vials has increased so much... I know from our 1st to 2nd course it jumped about $500 a vial in the space of 4-5 months... I was very shocked then.Carolynhttps://www.blogger.com/profile/04121927281998746424noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-6652280741060130432009-09-25T06:26:18.258-07:002009-09-25T06:26:18.258-07:00What do I want from IS awareness week?
No parent ...What do I want from IS awareness week?<br /><br />No parent should ever have to diagnose their child on YouTube <br />No parent should be told that their IS child just has colic, reflux or a delayed startle reflex. <br />No parents should be offered the choice between keppra and depakote as the first treatment<br />Neurologists should put out an agreed statement on treatment protocol<br />IS should be brought to the attention of pediatricians, nurses and nurse practitioners as an emergency condition that it is valid to refer a child to the ER with. <br />EI therapists should have a pool of information on the best way and the best intensity to treat children and help them close the gaps. <br />All people with IS should have access to the same quality and cost of healthcare as I am lucky to have.Sineadnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-89218476848128458072009-09-24T20:17:36.910-07:002009-09-24T20:17:36.910-07:00It's illegal advertising to the neurology comm...It's illegal advertising to the neurology community since Acthar is not FDA approved for the treatment of IS. Worse yet, CNF is condoning it. As usual, Questcor takes the unethical route of putting the screws to our kids. If they wanted to have IS awareness week, they should be celebrating the FDA approval of the first IS med - Sabril! Maybe CNF should invite Lundbeck to the party:-)<br /><br />Erin M.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-2031813142033559702009-09-24T11:58:00.893-07:002009-09-24T11:58:00.893-07:00The whole situation just totally sickens me...
I ...The whole situation just totally sickens me...<br /><br />I have said this for 20 + years and more than once online....It is ALL a "racket"...The drugs? The medical equipment? Even adult diapers?? A "racket" sucking the life out of the most vulnerable....<br /><br />I LOVE to see your fighting spirit...Especially now...I can feel you getting all revved up...I am in awe....<br /><br />CyndiColbyhttps://www.blogger.com/profile/05100340319951092104noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-82868598325928249002009-09-24T10:39:20.558-07:002009-09-24T10:39:20.558-07:00What beautiful writing on a not so beautiful topic...What beautiful writing on a not so beautiful topic. <br /><br />I may just link to you and everyone else because I just don't have it in me to give this subject the justice it deserves...Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-34263623810113265752009-09-24T08:36:08.131-07:002009-09-24T08:36:08.131-07:00Linked to you and MikeLinked to you and MikeJSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-23856586040108275992009-09-24T08:16:23.238-07:002009-09-24T08:16:23.238-07:00Well said D!
I made a post on my blog about this ...Well said D!<br /><br />I made a post on my blog about this too after reading Ken's. I think I'll go add a link to your post so that my readers can read it from your prospective too.Adestahttps://www.blogger.com/profile/08255048845212923176noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-24364247700481991842009-09-24T08:07:58.312-07:002009-09-24T08:07:58.312-07:00well said!
i love that advocating warrior Mama!...well said! <br /><br />i love that advocating warrior Mama! & i'm praying that her upcoming battle has a VERY VERY happy ending!!! ♥<br /><br />xoxox,<br />sharonMama Skateshttps://www.blogger.com/profile/10759832371415292719noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-18056372267803563552009-09-24T07:45:41.302-07:002009-09-24T07:45:41.302-07:00I think ACTH more often than not is a joke. When J...I think ACTH more often than not is a joke. When Julia took it it was 2006 and vials cost $700/each. I can't IMAGINE having to pay $100k just to go through the disappointment of the spasms returning, like they did for us. They would never reimburse anyone for failed treatment because they'd be losing tons of money.<br /><br />And quite frankly what do they care? IS isn't a sexy disease, if your kid gets it that's just tough luck and they have a captive market. It's still considered frontline so most parents are held captive and have to pay the exorbitant price.<br /><br />I'm in awe of you that you testified on Capitol Hill. That is so impressive.<br /><br />Thinking of you guys as your day draws near...Lisahttps://www.blogger.com/profile/07240953630100778600noreply@blogger.com