Amy Wickert's Comments

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At 6:19pm on March 10, 2009, christine good said…
Thanks for asking. I haven't heard back yet.
At 6:36pm on February 5, 2009, christine good said…
Amy,
I got a letter from my sons Dr. for insurance payment of Deflaz. Where did you send your letter? To the claims Dept?

Thanks,

Christine
At 2:42am on January 23, 2009, MicahsDaddy said…
Hi Amy,

Alec would need either 44 or 46 skipped. In frame and out of frame confuse me. I thought I had it figured out, but every time I think I do, I am wrong...so I gave up on that. Some people think it is the difference between BMD and DMD, with In Frame being BMD, but I have seen somewhere (I think the Utah database) that In Frame patients can have DMD...so who knows.

As for exon 45, it should be included as one of the first 6 exons to be tested in exon skipping. Currently, they are testing for 51 and 50 is right around the corner, if it hasn't already started. One of the organizational leaders of a different non profit has a son with our same deletion and they mentioned to me that what we need tested is right around the corner...so hopefully it is next.

My thoughts on exon skipping are not like other parents. I am very skeptical about it. All it does is change DMD to BMD, so still an MD. There are cases of BMD that are just as rapid as DMD, so who is to say that for each kid who receives exon skipping that they will live to 40, 50, or longer? My gut tells me there may be instances that even when changed to BMD, it could still be a fast progression.

I do think that since there are no potential cures in the pipeline, exon skipping mixed with other potential treatments will be the way to go. But, we need all these potential treatments to work. Utrophin upregulation, BBIC, and exon skipping may be the combo that will help slow down progression to help with longer lives...but all 3 are potential, so we must wait.

Your son and mine are right on that border where they may or may not be helped by a treatment. I feel positive with the work that is going on today. Will something come in time before they stop walking? I dunno? But I feel pretty strongly that something will come in time that they won’t have the complications we hear of in boys today who are in their later teens…and I feel that they will have a much longer life as well.

Just keep up hope and always stay positive.

Take care,
Christian
At 3:22pm on January 14, 2009, MicahsDaddy said…
Hi Amy,

Sorry for the super uber late response. Did you still need information on exon skipping? If, so, how much would you like to know?

Hope all is well,
Christian
At 9:41pm on December 31, 2008, Darcy Tumminello said…
Amy,

I believe you mentioned a month of so ago that you were able to get your insurance company to pay for calcort?? Would you be able to share how you won this battle and how you wrote the letter?

Thanks
Darcy
Christians Mom
At 9:41am on December 16, 2008, Nabeel Ahmed said…
Hi, Amy Wickert thanks for medicine name, have you seen any change in Alec after Iron medicine,
is he goes to school?
At 8:10am on December 15, 2008, Nabeel Ahmed said…
Hello, My name is Mehboob Ahmed from karachi Pakistan, I have a son Nabeel Ahmed 15 years, he was dignosed at 10, what about your another son joe,
can you give me name of medicine which you give to Alec as Iron.what he use for walking and climbing stairs.
At 10:07pm on December 14, 2008, djamel fathi said…
I mean he takes his time to sleep he goes to bed betwen 10pm-11:30pm wake up at 7:30am.
At 10:00pm on December 14, 2008, djamel fathi said…
He play on the computer or read a book,,,
Then he goes to the bed around 10pm to 11:30pm
The next morning have hard time to get up,but after having his breakfast ,it's a nother day,,,
My son isn't under any medication till today,I been very upset with his neurologist,we looking forward to go to chophiladelphia.
At 9:54pm on December 14, 2008, djamel fathi said…
Hi,my son have problem going up stairs,running,some speech problem,but THANK GOD he is very active,don;t get tired : I mean he goes school at 8am get out at 2:30pm,then walk to the rec center with friends,get out at 5pm ,came home ;eat,do his home work,play then around 7pm we go to the swimming pool for 90mns,after we get home you will think he is exhausted,NO
At 4:04pm on December 14, 2008, djamel fathi said…
my son also have deletion of exon 45 only,what are your son's symtome,does he get tired after a long day of activities...
At 8:03pm on December 4, 2008, Ardy Nelson said…
Hello Amy,
I'm a Grandma of 7 . one of which has DMD. it's such a heartbreak for us. I see we live near each other. your little guy is so precious.
At 8:25pm on November 23, 2008, Jennifer Collier said…
Hi Amy,
Thanks for the post on the message board about my son's speech and communication delays. Ryan turned three on August 30. So I guess he's 3 years, 3 months. I will try the things you suggested, thanks soo much!!!
At 1:51pm on November 12, 2008, Brenna said…
Sawyer sees the Doc tomorrow - for the first time in all of this I have a little anxiety. Thanks for the encouragement. Our vac is much needed and know that we will have a wonderful time.
Florida or Bust- Brenna
At 10:21pm on November 7, 2008, Leslie Guzman said…
Hi Amy!, thanks for the Welcome. Your kids are great!
At 11:50pm on November 6, 2008, Jennifer Shumsky said…
Hi Amy,
I am busy all day Saturday, but I may be able to do Sunday morning. My husband has a good friend in town from Michigan, but they won't be moving to fast Sunday morning, so I could probably escape without children then. My home email is jlshumsky@comcast.net send me a email there and we can figure out details and I'll give you my cell number and home number!
At 3:04pm on November 6, 2008, Brenna said…
Sawyer is 4 1/2. Thanks for the web site info. Every day I cope differently. Puddle is a great term. I'm tired of being strong for everyone else. I tired of family advice -- I think if we would have let some of them they would have sent us to moon if that would help sawyer. Being a nurse will pay off as the years go by but knowing so much more is hard right now. We meet with Dr. Day next Thurs and then leave for Disney on Friday. We planned this trip last Jan. before we knew anything -- ironic or what.
-Brenna
At 11:14am on November 6, 2008, Brenna said…
We just received Sawyer dx on the 20th of Oct. We see Dr. Day on the 13th of Nov. to review his genetic testing and get a "plan". What a roller coaster ride this is and will be for some time. I would love to meet. We live just 20 for Hudson, WI.
-Brenna
At 11:39am on November 4, 2008, Rhonda said…
Amy - Way to go on the insurance. That is persistance. Yes, you are paying a fair price. The reason why I asked is that I was using Global RX for the first few times of ordering. They charged me $125 for shipping which was just crazy! When we went to our appt in July our nurse told us about Masters and I have been using them since. I couldn't believe that the cost of the meds were the same between Global Rx and Masters, but the shipping cost and the lead time, WOW what a difference. Thank you for sharing. Take care.
At 3:45pm on November 3, 2008, Rhonda said…
WOW! How on earth did you get them to pay for the deflazacort?? I was able to get our deflazacort covered via our medical tax free account for this year only because our tax free provider from work messed up and told me they would cover it and so I put in extra funds to later find out they wouldn't cover it. I argued my case and got them to agree to let me use my tax free set aside, but they cautioned me only for this year. Next year I am on my own. I would love to hear how you got coverage on deflazacort. Do you go through Masters Medical for your deflazacort or Global Rx? Wow, I was so hesitant to join any website with DMD because I was afraid of what I would find out here, but wow, I am learning so much! I am glad I got the courage to reach out and learn. Thanks.

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