"Jennifer,
I re-read the discussion and you had said the doctor doesn't want to start him on steroids until he is 5. Is there a reason for the age? Joshua started Deflazacort when he turned 3. He is now 8.
Naomi"
-
Jennifer Collier
- 37, Female
- St. Augustine, Florida
- United States
- Featured Blog (2)
- Discussions (33)
- Events
- Groups (12)
- Photos (88)
- Photo Albums
- Videos
Jennifer Collier's Groups
Jennifer Collier's Discussions
3 Year Old Insomniac - HELP please!!!!!
Started this discussion. Last reply by Joshua's mom Jul 17, 2011. 13 Replies 0 Favorites
Children's Book Fundraising Idea
Started Jan 6, 2009 0 Replies 0 Favorites
Hippotherapy?
Started this discussion. Last reply by Lyndsey Manderfield Jul 15, 2009. 28 Replies 0 Favorites
Jennifer Collier and Ryan
Latest Activity
"Connor has been a bad sleeper too. He gave up naps the same time as my older son by 2 years. He would also fight off sleep even though he was tired and if we pushed the nap, he wouldn't go to sleep until 3 or 4 and we'd have to…"
stacy zamora replied to Jennifer Collier's discussion 3 Year Old Insomniac - HELP please!!!!!"That sounds like my 3 yr.old as well. He has always been a bad sleeper and I often wondered if it could be related to DMD .We recently started to give him melatonin and noticed an improvement. He now falls asleep around 9:30 as opposed to…"
Jonathan replied to Jennifer Collier's discussion 3 Year Old Insomniac - HELP please!!!!!"We have been told from our specialist that it is common for kids with Duchennes to have abnormal sleeping habits and that medications are sometimes required to help alleviate the problems that it causes - more for the rest of the family than…"
Joshua's mom replied to Jennifer Collier's discussion 3 Year Old Insomniac - HELP please!!!!!"Joshua used to have a similar bedtime routine so we started giving him melatonin at supper time. It takes about an hour or so to work, but he's now up to approx. 10 hours sleep when it used to be, maybe, 5 hours all together."
"Jen,
When I just read your post it sounds just like my 3 year old! Did you have his thyriod rechecked or what happened over the last few years?
Thanks,
Kira"
Carolyn Morrison replied to Jennifer Collier's discussion Speech and Communication Delays"I am wondering if speech problems are directly related to DMD? I saw in another post that someone's neurologist said speech problems are related to DMD since the dystrophin gene is so large. My 8 year old is still in speech (now end…"
"Hi Stefanie,
I am Alex's mom (Mrs. Hunkers class). We were wondering about thyroid issues for Alex. He is on steroids and has had so many side effects from them. He has gained a lot of weight on the steroids and we really try…"
Profile Information
- About me:
- I am a 34 year old mother of three beautiful children. I have been married for nine years to my wonderful husband, Kevin. I teach 8th grade science at a middle school in Jacksonville, Florida. We just moved to a house right by the beach - so my newest hobby is taking my little ones to play in the sand and sun! I just finished my master's thesis (written about Ryan and DMD) and I will be conferred with my Master's of Arts in Teaching in May of '09.
- About my family:
- My husband, Kevin, and I have been married for 9 years (February 11, 2000). I have three wonderful children. A daughter, Sarah-Marie who is five, a son, Ryan who is 3, and a stepson, Andrew who is 18. Ryan was recently diagnosed with Duchenne MD. He has a frameshift mutation of exon 38. We are originally from Michigan, and recently moved to St. Augustine, Florida by way of North Carolina. (We were in Fayetteville, NC for 2 1/2 years). Now we're in Florida, and I don't think we'll ever move!!!!
- Name(s) of child(ren)/individual(s) with Duchenne:
- Ryan
- Age(s) of child(ren)/individual(s) with Duchenne:
- 0-3
- City and State:
- St. Augustine, Florida
- Country:
- United States
Ryan and his Big Sister, Sarah-Marie
Jennifer Collier's Photos
Jennifer Collier's Blog
Just another day in Duchenneville.
Posted on December 2, 2008 at 3:30pm 2 Comments 0 Favorites
So, just as you think things are going okay, something happens to throw things off kilter. Just a normal evening turned into one very apologetic big sister and a trip to the emergnecy room ending with a foot in a cast. It seems Ryan and his big sister, Sarah were playing together. They were holding hands and spinning around until Ryan fell and banged his foot on the coffee table. I tried to soothe him, but to no avail. Because Ryan does not speak, we have to use trial and error to figure out… Continue
First MDA Clinic Visit
Posted on October 8, 2008 at 8:40am 2 Comments 0 Favorites
Ryan had his first MDA clinic visit at Duke University Medical Center in Durham, North Carolina on Firday, October 3, 2008. We left St. Augustine at about 3:45 on Thursday afternoon. After a painfully long drive, we arrived at our hotel at about 1 am. The next day, Ryan saw the neurologist at about 8 am, the pulmonologist at 12:30 pm, and the cardiologist/geneticist at 2 pm. Over all, we left Duke at about 4:30 pm. An incredibly LONG day!!! All of Ryan's visits went very well. His lungs and… Continue
Comment Wall (83 comments)
- At 4:43pm on June 19, 2011,
Joanne Ewins said… Hi Jennifer,
Just wanted to say thanks very much for your kind words and support it really a means alot.
Joanne
- At 1:18am on May 23, 2010,
Leslie Guzman said… - Hi Jennifer,
I got to this group by coincidence since I happen to be in Disney with no medicine for my son and getting crazy!! I admire you energy and drive. Congratulations!!
Well, you may have seen my post to see if anyone can help me with a solution to get Deflazacort/Calcort borrowed or Purchased. If you know of anyone, please let me know.
God bless your energy, passion and your son.
Leslie
Here is my phone incas eyou hace any ideas. Thx!
- At 7:14pm on September 3, 2009,
Mandy said… - Hi Jennifer,
I just noticed your license plate. I live in Plantation, Florida and my plate is
"CURE DMD".
Hopefully both our wishes will be a reality - god willing.
Hope your little guy is doing well. Mine is Alex, age 13 and is doing really well.
- At 1:14am on August 18, 2009,
Teresa Buchanan said… - Love your car tag! What a clever way to raise awareness for DMD!
Teresa
- At 1:03pm on August 5, 2009,
DanielsDad said… - Talking about being away for a long time...wow...November and now I return a message. We are okay...Daniel is holding his own...we are in Cincinatti at the hospital for our yearly visit...today is day 1 and the testing day. tomorrow is the Drs. visits and friday is a new test to check growth hormone levels...not sure what comes after that test, but interested in finding out. He is on Deflazacort, and im sure thats the big reason why.
How have you and family been? sorry I havent written in so long :0
- At 7:44pm on May 10, 2009, jeff said…
- Jen
My grandson is 20 months old. I am doing a lot of research on different companies that are working on a cure. Myomics is testing various compounds to come up with a cocktail that will strengthen muscles to give us all more time.
JEff
- At 7:33pm on April 19, 2009,
Janine said… - Jennifer,
Just wondered if you guys went ahead with a muscle biopsy or not?
Janine
- At 10:26am on April 5, 2009,
Jill Keenan said… - Hey Jennifer! Thanks for the shout out! It has been a REALLY long time since I have been on here!! Things are going good for us. We went to see Dr. Wong back in February and Wyatt is still doing ok-so that was good to hear!! How is Ryan doing? And you? I imagine the weather in Florida is great about now! It is pretty good in Houston! Soooo glad I do not live where it gets and stays cold ALL winter! Y'all take care!
Jill ;)
- At 12:12pm on March 24, 2009,
Mark Dickerson said… - Hi Jennifer,
How interesting that you used to live in Michigan and now teach school in Jacksonville. My wife, Danelle, and I lived on the north side of Jacksonville from '96-'99 and have now moved back up to Michigan. The warm weather in FL sure is nice!
Thanks for welcoming me to PPMD. Danelle is on every day and keeps me udated, but there are times when I just want to keep up on stuff myself:) We are starting steroids next week because we have seen such a dramatic decrease in Matt's strength over the past few months. We are praying that this will give him extended strength and encouragement and keep him from falling as much.
God bless, and keep praying for a cure!
Mark
- At 1:53pm on March 4, 2009, Chuck Riesebeck said…
- Charlie is 9 1/2 (6/25/99). What you expoerienced with Dr Smith is not that unusual. There seems to be a huge opportunity for a better understanding of facts and details @ Duke. From what I've heard Dr. Wong and her team have all of those facts and details but I have no personal experience with her yet. I've never heard of any deficiencies though. Let em know if you'd like to talk vs. type and I'll get you my contact info.
Best wishes to all of you.
Need help using this community site? Visit Ning's Help Page.
 |
 |
 |
Events
-
Gala Blue Ball
May 26, 2012 at 6:30pm to May 27, 2012 at 1am – Esplanade Hotel, Fremantle
0 Comments 0 Favorites
© 2012 Created by PPMD.
