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Duplications

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Military Families with D…

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Exon Deletion 52

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Cori's Discussions

Medical Cost DMD

Started this discussion. Last reply by Ian Anthony Griffiths Jul 14, 2010. 16 Replies 0 Favorites

I ran into a gentleman over the 4th and we presumed to talk about Trey's diagnosis, and he asked me a simple question that I don't know the answer to..."What are the medical charges associated to…Continue

Tags: medical, cost, lifetime

Giving Steriods

Started this discussion. Last reply by Clare Harper Jul 27, 2011. 6 Replies 0 Favorites

We are starting Trey out on Steroids today. He needs to be at 15mg a day. Doctor special ordered us 5mg tablets... Does anyone know if there are any contraindications to spreading out the tabs…Continue

Tags: 15mg, out, spreading, amounts, steroids

Deflazacort Military

Started this discussion. Last reply by Cori Apr 6, 2010. 3 Replies 0 Favorites

Can anyone tell me if they have had any luck getting military to pay for Deflazacort? Trey (now 5.5) is starting on steriods on Friday and the doc said she wouldn't have a problem with Deflazacort…Continue

Brochures???

Started this discussion. Last reply by Christine McSherry May 18, 2010. 13 Replies 0 Favorites

Things are a bit...well chaotic around here right now... HOWEVER, we have a school doing a fundraiser for DMD research. We are doing an assembly for the children (k-12) explaining DMD, BUT they are…Continue

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2010 Climb to Cure Duchenne

Posted on February 21, 2010 at 3:30pm 6 Comments 0 Favorites

I don't know if any of you have heard of this but I thought I would pass on... CureDuchenne (website: cureduchenne.org) is having an annual 2010 Climb to Cure Duchenne, Pick your Peak on June 19th and 20th.

I know that many of you will not be able to participate due to various reasons. And I know many of you may be particularily fond of just supporting PPMD, however our money all goes to the same place, right? To cure…

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Genetic Mosaicism

Posted on February 21, 2010 at 2:46am 8 Comments 0 Favorites

So I don't know where to post this, so I am hoping if I post it here many people will see it...

Okay so our son Trey has a deletion of Exon 52 which we found out about while I was pregnant with our daughter. After having our daughter I was genetically tested and found to not be a carrier, but the genetisist did say that there is a small possibilty of Genetic Mosaicism.

Now 4 months after having our Daughter I get a call from my OB doctor stating that she is…

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Can someone explain Isomers?

Posted on November 5, 2009 at 3:35pm 19 Comments 0 Favorites

So our little Trey has been diagnosed with a single deletion of exon 52. With that and all the research I have done I understand that he needs to skip exon 51 or 53 to become 'inframe'...and I also understand that research is currently being done for boys with this deletion.

A huge question I do have is I was told that if a child is missing exon 52 or any higher then that then they are missing isomers in their brain of DP140 and DP260. Little Treyman is very bright but it does seem… Continue

Getting People to take you seriously!

Posted on September 15, 2009 at 4:19pm 10 Comments 0 Favorites

Okay I am writing to rant...I am SO very fustrated...

Went to the school district today to get Trey enrolled in Early Start Kindergarten...we are in the process of the IEP now, and this lady asked how old Trey was...Trey just turned 5 last wednesday, and we just got a 90% sure diagnosis of Duchenne's last Wednesday...so this is all new.

She asked me when his birthday was (September) then went off on me about the fact that Trey was 5 already (for 6 whole days) and not in… Continue

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At 6:12pm on December 23, 2010, Nana said…: Hi Cori,

Just wanted to wish you and your family a very Merry Christmas and wonderful New Year!

We are all doing well- hoping we can move to California once my husband finishes Law school and takes his exams. Hope all is well with you.

:) Nana

At 12:07am on April 28, 2010, Candace Miller said…: Little Ethan has joined the family. He was also diagnosed with DMD Friday, April 23 at 10 weeks old. It's been a rough start to the year but we'll see how things go for the rest of this year. Just taking things one day at a time.

At 4:04pm on April 19, 2010, Mark Perrotte said…: Cori...Keep me posted on your sons progression with Deflazacort. We are starting Matthew in the next week, as his diagnosis was only two months ago. I would not have put him on Prednisone, but through meeting families, it would seem the benefits of Deflazacort are incredible in comparison. Thanks...Mark

At 11:29pm on April 11, 2010, Nana said…: Hi Cori,

Saw that you are beginning steroids with Trey. Just wanted to let you know we are thinking about you. You might already be doing this, but we found keeping a behavior journal along with the dosing of meds to be helpful to sort out some of the side effects. We have been trying alternate day dosing deflazacort to reduce behavior side effects since August (research outcome is very mixed, but we made our peace with it) Charles's behavior improved significantly, he has continued to grow, and overall the docs and therapists feel he is maintaining his strength well. I would be interested to hear how spacing low doses through out the day works for you.

Blessing to you :) Nana

At 12:07pm on April 10, 2010, jennifer renshaw said…: Wow! I just dropped by to reply to the message you left me months ago. I don't think you are rude what-so-ever for just popping in and asking questions. We are a family of sorts, because of our circumstance. '09 was a rough year for us. Andrew had spinal fusion in Jan. Several lung infections, and a couple of hospitalizations through the spring. Lingering bowel issues because of the antibiotics. In the long run the surgery was a success as his curve is fixed and hopefully his respitory function will remain in normal range longer, because of his posture change. Andrew is a freshman in high school. He functions socially at, or a little below, age level. He reads at a 7th grade level and math 5th,but is progressing and loves school. This past summer Andrew was to take part in a clinical trial in Columbus Ohio as he has the exon 52 deletion, but that trial has been put on hold. Although it is disappointing other trials are on going and that could spell success for everyone. It hasn't been an easy road, but my husband and I, and our girls are a team. We keep on keepin' on. I must end with this...My son, Andrew IS the strongest person I know. He has a smile on his face every day. A joke to tell, or a smart alec comment. Being happy through all this is like climbing Mt Everest. I'm proud! Take care. Nice to hear from you.

At 9:06am on March 11, 2010, Lori Ware said…: Hi Cori,
Yes, Seph is on HgH. I give him the shots every night. I can't say he loves them, but he is used to them. As for side effects? Well, he has grown 4.75 inches in 18 mths! He turns 8 today, so he now looks about like a 6y/o. He was at the 3rd percentile when we began them and that is why we tested him. He was specifically tested for growth hormone and his is/was normal. BUT, due to his stopping growing b/c of steroids, the insurance went ahead and approved growth hormone. We are about to change insurance, so I hope there is not a problem with the new company! UGH!

We hae not seen any negative side effects. I know one boy who was on Hgh and it caused fluid retention in the brain that caused severe headaches and pressure on his optic nerve, but they were on it quickly and got him off the shots and he was fine. That is a VERY rare side effect and happens pretty quickly if it is going to.. m ost of the boys I onw on it have had nothing but good results.
Good luck if you pursue this. I know that dr Wong won't put someone on it until there is pretty significant delayed growth....you may be there??? who knows!!! Good Luck!

At 2:50pm on March 1, 2010, Ofelia Marin said…: Yeah...AVI have been talking about starting trials in the US since last year. It was September 2009, then March 2010 and since now it's March and the FDA did not give them green light it's "later" this year. Prosensa/ GSK said "early" 2010 and now we heard that the FDA requests a small intramuscular non-ambulatory trial before they allow Phase III in ambulatory boys to start. So "early" 2010 is now "late" 2010. :-( I'm fed up!

At 12:55pm on February 23, 2010, Wyatt's Mommy, Melissa said…: Cori, thank for the birthday wishes for Wyatt, you are so sweet. You're right birthdays can be both a blessing and a curse. I'm so happy to celebrate his life, but them I feel like the clocking is ticking and I can't stop it. I would love to just freeze time and keep all my kids the ages they are. My daughter will be 16 soon and if I could freeze time I wouldn't have to worry about her dating, driving cars, etc. (I would sleep a lot easier, hahaha).

How is Trey doing? I remeber talking to you at the time of his diagnosis and you were moving, changing schools, having a baby. I hope those things have all calmed down alittle and you can focus on raising your babies.

I hope you have a great day today, give Trey a hug from Wyatt in Washington.

Love, Melissa

At 1:48am on January 23, 2010, Nana said…: Hi Cori

So good to hear from you. I completely understand- we are a bit overwhelmed ourselves trying to figure out the next level educational support we want for Charles. We finally finished Charles's neuropsych exam which classified him as very "exceptional" Gifted, ADHD, LD reading, LD Math, R/O LD writing and of course DMD. The neuropsychologist told us he didn't think the public school would be able to meet his needs and advised us to try and find a special school that specializes with Gifted Children with learning disabilities and push the school district to pay for this. Interesting enough I did find such a school- but they are not in an accessible building and would require Charles to climb stairs! Tuition $33,000/year!

Anyway I am now looking into specialized tutoring programs for kids with "learning differences" to see if any can help us. We will also be starting ADHD meds with Charles if we can get "cardiac clearance" Cardiac eval is sceduled in Feb.

How is your baby girl? The word Insane doesn't seem strong enough to describe all you must juggle every single day! I'll definitely be praying for you and your family.

More later,
Nana

PS. we did have a good holiday :)

At 7:10pm on January 14, 2010, Brian Denger said…: Hello Cori,

I will get you some information in a few days...My schedule is a bit tight right now. I won't forget you. Please e-mail me at brian@parentprojectmd.org so I have your address.

Best regards

Brian