Jessica Divin
  • Female
  • Yorkville, IL
  • United States
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Jessica Divin's Friends

  • Ann Lucas
  • Sharon Kippers
  • Susan Parzymieso
  • Betty Vertin
  • lynn weatherford
  • Benjamin Andrew Divin
  • Jaden Cook
  • Karen flor
  • Michelle Gonzales
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Jessica Divin's Discussions

Zantac

Started this discussion. Last reply by amit gupta Feb 24, 2011. 12 Replies

Hi everyone!  We are having to start our son Ben on Zantac but I am unsure of when to give it to him.  Is it only effective if given in the morning before breakfast and steriods?  Would it work as…Continue

Deflazacort shipment

Started this discussion. Last reply by Ofelia Marin Jan 18, 2011. 13 Replies

Has anyone has been waiting a long time for their Deflazacort shipment to arrive?  Our order shipped on Dec. 3 but we have not received it!  I was getting nervous and ended up calling Julie at…Continue

Deflazacort and weight gain

Started this discussion. Last reply by Donna Oct 28, 2010. 1 Reply

Hi all.  Have any of you have seen a big weight gain in the first year of taking Delflazacort?  My son is 4 and has been on deflazacort for about 4 months now.  Yesterday we were at our regular doc…Continue

 

Jessica Divin's Page

Latest Activity

Jessica Divin commented on Lisa Jones's group Cincinnati Children's Hospital Medical Center
"Anyone in next week? We will be there July 29-Aug1."
Jul 24, 2013
Betty Vertin left a comment for Jessica Divin
"Hi Jessica, My husband Jason did tell me he met another family with a 6 year old, but he couldn't remember your names, so I'm glad you followed up!  We actually have 3 sons with DMD, Max, the one you met yesterday is the oldest.…"
Mar 21, 2012
Betty Vertin and Jessica Divin are now friends
Mar 21, 2012
Jessica Divin replied to Betty Vertin's discussion Suggestions on an electronic scooter
"We are in the same position as our son is 6 and he is getting a little uncomfortable in the child size stroller we currently use.  We have a meeting set up with a wheelchair vendor to check out a manual chair and we also want him to try out a…"
Mar 1, 2012
Jessica Divin replied to Joshua's mom's discussion Blood in urine
"Hi Liisa, We have seen this as well in our son Ben, 5.  It happened twice before diagnosis at age 4 (so he was not yet on steroids) and twice after diagnosis (on steroids).  After we were aware of dmd we were told to immediately begin…"
Oct 10, 2011
Jessica Divin replied to Sara Savalli's discussion stabilizer wheels or something for a bike
"Not the best picture-was taken on a phone.  Hope it helps!"
Sep 2, 2011
Jessica Divin replied to Sara Savalli's discussion stabilizer wheels or something for a bike
"I would call around to local bike shops, let them know what you are looking for and see if they can help you out.  Our son is 5 and had the same problem with the small training wheels.  He now has stabilizer wheels and toe clips that keep…"
Sep 2, 2011
amit gupta replied to Jessica Divin's discussion Zantac
"thanks, naomi...keep us updated on this."
Feb 24, 2011
Joshua's mom replied to Jessica Divin's discussion Zantac
"Amit, Joshua's neurologist keeps in touch with the Doctor running the trial in Calgary and she had told him Joshua is still on the list. We haven't been contacted by them since registration, but the list is/was bigger than they had…"
Feb 23, 2011
amit gupta replied to Jessica Divin's discussion Zantac
"hi naomi...i believe your son joshua was in the ace31 trial...can you update us on it?"
Feb 23, 2011
Cheri Gunvalson replied to Jessica Divin's discussion Zantac
"Jacob has been on deflazacort for 12 years. "
Feb 3, 2011
Amrit replied to Jessica Divin's discussion Zantac
"Hi Cheri, It is really nice to know that Jacab is doing good and is full time college student. Can you please let us know how long  he has been on deflazcort? Thanks, Amrit   Hi Amit, As per Dr Wong, cataracts should not scare you. We need…"
Feb 3, 2011
amit gupta replied to Jessica Divin's discussion Zantac
"hi cheri, did your son have only concentration side effect or other too like cataracts? did he always take deflaz? we'd probably be starting steriods for our 7 yr old in a month and we are very scared..."
Feb 1, 2011
Cheri Gunvalson replied to Jessica Divin's discussion Zantac
"Our 19 yo son Jacob also is on an acid reducer with his pm meds.  In addition after many years of deflazacort he developed concentration issues from the long term corticosteroids and so he now takes his deflazacort also in the pm and it…"
Jan 31, 2011
Joshua's mom replied to Jessica Divin's discussion Zantac
"Yes we are still ordering Idebenone. I sent you a message on facebook in telling what the doctors have seen what the effects of it is and we now order it from Kirkman."
Jan 30, 2011
JUAN PEDRO ARBULU replied to Jessica Divin's discussion Zantac
"Hi I was wondering if you are still orderin Idebenone from smart nutrition, is Joshua still taking it?   greetings JP."
Jan 30, 2011

Profile Information

About me:
I am a stay at home mom of three wonderful children. My husband Andy and I have been married for 12 years and we now live in Yorkville, Illinois (about an hour outside of Chicago).
About my family:
Hannah 11 yrs, Ben 9yrs, Katie 5yrs. Ben was diagnosed with dmd in 2010.
Name(s) of child(ren)/individual(s) with Duchenne:
Ben
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Yorkville, IL

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Comment Wall (7 comments)

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At 2:48pm on March 21, 2012, Betty Vertin said…
Hi Jessica,
My husband Jason did tell me he met another family with a 6 year old, but he couldn't remember your names, so I'm glad you followed up!  We actually have 3 sons with DMD, Max, the one you met yesterday is the oldest.  Then we have Rowen, 3 and Charlie, 14 months.  Then we also have Lexi,10 and Chance, 4. We are pretty busy, but love having a big family.

I see you friended me on Facebook too, I look forward to getting to know you better!

Betty
At 1:33pm on March 1, 2011, Karen O. Burch said…

Hi Jessica,

Thank you for responding to my new member profile.  I would like to talk with your mom.  I think it would be nice to have a local connection to someone with a similar situation.  Karen

At 12:22pm on February 28, 2011, Sharon Kippers said…

Thank you Jessica I just found ppmd. And it is a lifesaver. I have a friend who went out of her way to find resources for me. So thanks to her I found more support.

Sharon

At 7:13am on August 3, 2010, lisa burke said…
Thanks Jessica. I'm sorry you had a bad week. Hang on in there though, our sons are only little and I feel sure that effective treatment is coming. Am I correct in thinking that you need exon 51 skipped? If so, this is the same as for my little boy. Even if it only works to slow down the illness for a while, it buys us very valuable time for some of the other research projects top come to fruition.
Take care.
At 10:47pm on April 25, 2010, lynn weatherford said…
Your family is beautiful.....glad you had a laugh on my quote...laughing is important to have in our lives.
At 3:34pm on March 29, 2010, Michelle Gonzales said…
Jessica,

Yes I know the center!! Very close!

If you ever feel like emailing me outside of PPMD, my direct email address is garnet028@yahoo.com.
The families I spoke to when I first found out were Sophie Smitzel and her son is Logan. They live in Aurora. He will be 11 this year and she is very very involved with MDA. She also told me to go to PPMD website to get other answers. I first spoke to Chris Hyatt. Her son LIam is probably 8 or 9 this year and live in Sandwich I believe now. She and her husband are extremely funny and she was so very helpful to me when I had a ton of questions.

It would be great to meet with you and Ben. I know Nicolas would love to meet Ben.

It shouldn't take you too long to get in to see Dr. Wong. It wound up taking me only 3 months when I first found out. It's exhausting to go there for 2 day long visits, but I always feel like I'm accomplishing something by seeing her and her team. Plus, it becomes a mini vacation for us!!
At 1:58pm on March 25, 2010, Michelle Gonzales said…
Wow, that is close! I work in Oswego, and my son goes to Boulder Hill Elementary! First off, I am so sorry to hear about your son's diagnosis. One very good thing though is that he would totally qualify for the exon skipping trials. We see Dr. Wong in Cincinnati and she will be conducting the exon skipping for Prosensa. I have also put Nicolas on the list for the trials with Dr. Mendels study group for the AVI exon skipping trial. Dr. Mendel is one of the leading researchers for MDA and is in Columbus Ohio, so whichever trial comes first (AVI was supposed to start in March but has been put off for a bit) - we'll be there!!
It would be great to keep in touch with you since you are so close!! Have you spoken to any other families in the area? By the way, Ben is absolutely BEAUTIFUL!!
 
 
 

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