Hi Lauren. My son, Cameron is 13 years & I'd say is doing quite well. He was diagnosed at 7 and started steroids right away. We live in Collierville, TN (near Memphis) but have traveled to Columbus & Cincinnati, OH for care. I remember Dr. Mendell, at Nationwide Children's, telling me that exon 44 was a good deletion to have. Not because of the prognosis, but because it was a common deletion that would be among the first to be treated. Let's pray things move quickly!
good to hear from you. My 5yr has been on prednisone for 9 months and is doing really good on it, jumping, running, steps, things he never did!! My 2 yr has no signs, he is incredibly strong, if not for DNA, I would never guess he has DMD.
We were at the Johnson run as well, kinda. I got lost and got there really late. I hope there are more local events coming up, it seems that quite a few of us are in the same area. Keep in touch, Lisa
Hi Lauren, welcome to NJ FACES. Our next meeting will be in October. ( we have 3 families having significant events in September and one in August, so we pushed the meeting to October) I will contact you when we know the details. email me with any questions. I have a 7 year old with Duchenne and an almost 6 year old (non affected) chat soon! firstname.lastname@example.org
I see you live in Pottstown which isn't too far from Quakertown. Would you be able to join the PA familes in this area to help with the fundraiser in October? We will need people to man the ticket table and the games.
If so please email me at email@example.com so I can put you on the mailing list.
I tried to email your regular email, but I'm not sure if you got it. It was several days ago. Sorry to be out of touch. Seth and I were unexpectedly away for the weekend (a good thing). I emailed Paul Johnson with a deflazacorte question and he emailed back that they are in Napa, so I guess us girls should try to catch up next week to schedule a date. I am really feeling down this week, so would look forward to the companionship. I hope you guys are doing really well and get to do some fun "fall" things!
I'm glad that things worked out well on the bus! I am still trying to get Jordan's bus route altered, as right now our neigbhorhood is the first one picked up and the last one dropped off. He doesn't get home until 4:15, and I feel like it's just too long a day. I guess I'll end up picking him up most days if they don't change it.
Thanks for asking about Jordan. He actually hasn't started the deflazacorte yet-- we're still trying to figure out the prescription, etc. We spent all morning yesterday at AI going through basically the same thing they did at CHOP in August. I was really annoyed, since they knew we had been at CHOP and had the report. Ultimately, it was good I guess, since they said he is doing really well, and scored 5/5 on his strength tests (I don't understand how that can be). We are going to have AI do the monthly check ups, and only take him to CHOP at 3,6 & 1 yr. AI is only 15 min from us, and it just makes life so much easier.
I'll let you know how it goes!
I expect to see Joanna later this week, so I will ask her about getting together. I would love to, and early Oct. should be fine.
Lauren, I'm so sorry that that mean lady is giving Jake a hard time!! Feel free to rant any time. I feel like I could rant all day, every day, and I am trying really hard to not have the stress of this make me irritable about everything all the time.
I hope Jake loves the bus and school. I do feel lucky that I didn;t know about Jordan until this summer, so he had a whole year to adjust to school on his own.
I hope the rest of your day (and week) go better. Feel free to call me anytime-- 610-388-3434.
Maybe you, me and Joanna should meet for dinner sometime soon. I bet KofP is kindof in between for all of us.
sorry for taking so long to get back. Jordan started 1st grade last week, and I have been a knot of anxiety worrying about how he's doing (even though other than this diagnosis I have no reason to think he'd have any problems more than a "normal" kid).
Jordan loves school, but watching him climb the first bus step every morning is making me a wreck. He doesn't complain at all, and I can't be sure if he's getting on with more difficulty than he did last year. How he was getting on the bus was one of our first clues that something was wrong.
We are headed to AI DuPont on monday to get our deflazacorte prescription. The dr. there is going to monitor regular progress, and we are going to go to CHOP for six month visits.
I hope you are surviving back to school ok. You said what I also think-- I don't want DMD to take over our lives, but it certainly seems hard to avoid at this point.
Keep in touch!
I am sorry to hear about Jake and Ryan's dx. You are the 4th family that I know of now with the same deletion that Cole has. It took quite a few months to finally dx Cole in 5/2002 - so we've been aware for 6+ years already. He is doing well and we take him to see Dr. Wong @ Cincinnati Children's annually. Unfortunately we don't have decent care (coordinated or comprehensive) here in CA - doesn't make sense to me since it isn't like we live in the middle of nowhere.
Cole turned 9 on 8/3 - and he's still ambulatory. He's in 4th grade and prefers his video games to school work. But then who wouldn't, huh? Once he gets started on it though - he breezes through and surprises himself (and me) that it didn't take as long as he thought. LOL
Well Lauren, I know this is an overwhelming time for you and your family - please don't hesitate to contact me if you would like to chat or would like to ask questions about how Cole has been progressing since he shares the same deletion as both your boys. If you would like to contact me off this site - you can email me anytime at firstname.lastname@example.org or email@example.com.
I am SO sorry to hear about your younger son. I am feeling really hopeful that we just have to keep our little guys healthy long enough for them to get the drugs through the clinical trials. I just got my report from Dr. Tenekoon today, and it seemed fine, but I am going to consider whether we make our next appt at CHOP with Dr. Finkel. Dr. T is really nice, but I would be curious as to what Dr. Finkel would say. I don't think we have to go back until Jordan has been on steroids for 6 mths though, and we haven't even started them yet.
Have you been in touch with Paul and Joanna Johnson since you've gotten the news about the baby? They are in the same situation, and there boys are almost exactly the same age.
Hi Lauren! Thank you for those kind words - yes, Jack has been on steriods for almost 3 years, it's made a difference in his ability to get around. We would do it again if we had to do it over. There's a liquid form of predisone called Orapred, it's grape flavored and Jack's been able to take that (the pills and regular non flavored predisone is HORRIBLE! Tasteds like motor oil) - check your insurance to make sure it's covered. Jack's side effects have been some agression (that's subsided) and he gained a lot of weight. He's had a growth spurt so that helped a bit. You also have to change your diet to a low sodium, better (healthier) eating habits.
I'll be home all day today (9/2) if you want to talk, email at firstname.lastname@example.org and i'll send you our phone #, I took the day off to recover from MDA telethon day.
I am sorry to just now be responding to your posting of several weeks ago. I was happily away for the month of August, trying to put off reality for a little while. We did go to CHOP on 8/8 for the first time, and were also impressed. I still haven't gotten a written report as of yet, so I am waiting for that. I still have to move forward on getting my son started on the steroids. Have you done anything about that yet, or are you holding off.
I am home most days, so feel free to call any time, 610-388-3434
I hope we get a chance to catch up, especially since we both seem to be at about the same place in dealing with this.
Hello Lauren -
Welcome to the site - lots of good information and people on here. We live down Rte100 in Downingtown with our 2 sons 4 1/2 and 2, both with dmd. Maybe we'll meet-up sometime at some local event...