Lisa Tepper's Page

Lisa,

We got him a Convaid Cruseair. It is good up to about 75 lbs and fully adjustable for height. We chose it because it is very durable and fairly portable (larger than an umbrella stroller, but folds up smaller than most full-size strollers).

We had to order the stroller through a medical equipment store who had to negotiate with our insurance for coverage. MDA was also willing to put up some money for what insurance wouldn't cover.

It has been very helpful for us and allows us to go on much longer outings than we normally would be able to.

Hello Lisa! Just saying HI and hope things are going good for you. Is Brad enjoying kindergarten? Such a big step for them! I bet he is loving it. Wyatt's friends in the neighborhood all turned 5 and went to school this year, so he is wondering why the heck he can't hop on that big, yellow bus with them!! Any who.....take care and have a great rest of the week=)

Hi Lisa!
Sorry about the confusion on the posting. I will definitely let you know how Jordan does on the Deflazacorte. I assume we are going to do daily, and I also pray that he will not be on them long. The doctor at Children's in Phila that we saw was optimistic that drugs will be available w/in the next several years. I know there's a few promising things that will be going into trials soon. I just constantly pray that he will continue to be great, and we can keep him as healthy as he is now until that drug comes along.

Take care, and I hope Brad continues to love kindergarten!
Regina Reidenberg

Hi Lisa--
I wanted to follow-up on your comment to the deflazacorte discussion. You mentioned that your son's symptoms are mild, so you didn't see too much of a difference. My son's only issues at this point are getting up the steps and a modified gowers in getting off the floor. Did your son have these issues yet, and if so, did the steroids seem to help? I am really hoping that with the steroids, these symptoms will improve, but I just don't know. I have such anxiety watching him do things like get on the bus, and I am hoping that the deflazacorte helps him.
Any insight from your experience would be greatly appreciated!
Thanks,
Regina Reidenberg

Hi Lisa,

I am so glad Brad had a wonderful day. I am hoping you will put up some pics of his day so we can all share in his joy (and yours).

In answering your questions, rather than go into details and taking up a lot of your comments space, you can read my blog (An Introduction) on why and how we had James diagnosed. It was pretty much a fluke, but it worked out the best as we were able to start intervention early and get him on steroids straight away.

Deflazacort has been great, at least for James. He has certianly gotten stronger, though he still has days or weeks where he is unusually weak and tired. Most of the time, this is due to him having a cold - they seem to affect our boys more when they're on the steroids. I used to freak when he seemed to be getting weaker (still do, to be honest) but he usually was back to normal within a week or two. His behaviour has changed, but not sure if that is steroids, dmd brain, or 4-year-old testosterone. I am sure it's a combination of all. All in all, he is still a wonderful caring and loving boy, like he has always been.

James was diagnosed here in Singapore, and that has been tough not having family around. However, we live amongst a wonderful community of expats and those who are our friends have been nothing short of amazing in their support. James is a patient both here and in Australia, he has been going home to Oz 1-2 times per year for checkups, but now we are in the process of moving to London (within the next 2 months) and the care there is supposed to be fantastic. His doctors in Oz are going to put us in contact with some great docs over there, and the same goes for his physiotherapy. I think the move will be wonderful, he will get to see snow and Europe, and he will have a puppy dog, and he will have a big yard with a trampoline. It's all about giving him a lifetime of experiences in as short a time as possible, whilst he is still able to get around by himself. I can't wait, and he is desperate for a house with a chimney so Santa can come down it. Gotta love childish innocence, hey?

Anyway, I've rambled long enough. Enjoy your day with your boys!

All the best,
Sharyn.

Lisa, I sure hope you didn't think I thought you were completely depressed and sad all the time (and gosh, who wouldn't be anyway?? and I certainly wouldn't be judging you if you were!), etc. I just thought you were sharing your story and how it has affected you--just like everyone else does on here. We all have our good days and our not so good days and our really bad days!! I think it will always be like that, for me anyway, since this is a life-long disease--we will go through the "grieving process" over and over again.

Wyatt doesn't start school until next year--he misses the cut-off. Whew=) He seems to be doing well. I don't think he is as weak as some but maybe not as strong as others. We need to go get him fitted for his night splints--I'm hoping he won't have any issues with wearing them! We started steroids about 5 days ago--that was epic in our house! Made dmd all the more real!! He took them like a pro, though. I was so glad b/c I was so worried he would have a hard time swallowing them. Small blessings, of which I am grateful=)

I went to the conference as well. Were you totally wiped when you got back? I was. My husband was not able to go, and it was hard to take it all in and not let it get to me. When I got to my parents house, I crashed!! But loads of great information!

Can't wait to see some pics of your little guy and your family!! Take care! Jill

Hi Lisa! I read your comment in the "newly diagnosed" group and was so sad to read your post. I am so sorry that your son has been diagnosed. My son's priliminary diagnosis was Oct. 15, just a few weeks before your son, and 3 wks. after his 4th b-day. We, too, thought he might need a bit of PT to help his gait--that was it. Never had any other issues with him, so like you, this came completely out of the blue. I was shocked and completely devastated, as you well know. I have found that there is hope for our sons and I cling to that and to this site. I have never been an "online" chatter kind of person but figured that I had to come out of my comfort zone to help my son. (I was a "lurker" on the old msg. boards for about 5 mos. before I finally made a post. After that it got easier.) I also have found that life does go on and you have to roll with it--what choice do we have?? People think I am so strong, but what else am I going to do? I have 3 other children to care for as well and I have to show them that we can still be a happy family and have as wonderful of a life as we possibly can. I try to be strong for them but I also think it is okay and probably even good for all of them to see me cry. I think that opens the door for them to tell me how they really feel and face things instead of holding it all in for fear of upsetting me. Now, that said, I don't think it's healthy to focus on the negative but just acknowledging their feelings and mine, goes a long way in helping them cope with the hand that we have been dealt! I hope that you find this sight as helpful and insightful as I have. There are so many wonderful and knowledgeable folks on here that are so willing to help--you just have to ask!! If I can ever help you, I would be more that happy to!
Jill
P.S. I grew up in Asheville, NC--was just there 3 wks ago as my family still lives there! I love it there--it is so beautiful and soooo much cooler than here in Houston=)

Hi Lisa.
Just wanted to say Hi. We just moved from North Carolina, to Florida. We lived in Fayetteville for 2 1/2 years - no - not military! My son Ryan will be three August 30th -he was diagnosed with DMD in May. Do you guys go to Duke or UNC. Ryan was diagnosed at Duke by Dr. Smith. I hear their MDA clinic is great. Welcome to PPMD - You'll find answers and support here!

Lisa,

You will find it here I promise. I have never been part of an online community before either and I love this one-it has been such a wonderful community. Let me know if you have any questions about navigating the site or anything like that.