I am new to PPMD and this online community. My son is 3, turning 4 in late March. We got our diagnosis when he was just 2. I have yet to see any benefit to this early detection. We go to Shriner's in Portland, OR every 9 months and so far they are taking a "wait and see" attitude.
What have you all done for your early detected children? What would you suggest I explore?
I appreciate your replies or your connection to relevant websites or other resources.
Leslie, mother of Aaron
My son was diagnosed at age 3 and is now 5. He doesn't need any real treatment yet beyond stretching. We are hoping to have a few more years before needing steroids. He has frequent muscle pain which requires him to take breaks when playing. The best treatment for us right now is to try to have lots of fun!
We started our son on Prednisone just before his 4th birthday and it has had an amazing impact on his strength and ability to keep up with his friends. He's had no real side effects other than being a little shorter than some of his classmates. We are religious about stretches but are now alternating between them and a wedge. He wears his "boots" at night. James has weekly speech therapy. He has an IEP through the school system but doesn't really need any of the available services at this point. He was going to physical therapy but both his doctor and his therapist agree that there isn't much benefit yet, as long as we do some basic exercises at home.
We are all winging it to some degree, but I think there is real benefit to doing as much as you can as soon as you can. My mom keeps telling me that if we've done nothing else, we've given James his childhood - which is a great thing!
Well, first off Aaron is absolutely gorgous. What a beautiful face he has. He's blonde just like my son Wyatt.
Wyat was diagnosed when he was a little less than a year. And in those 4 short years (he will be 5 in just 12 days - I can't believe it) we have learned so much.
Wyatt has been going to Cincinnati children's (we live in Seattle) since he was 15 months. We have actually been to Shriners in Portland for one visit in August of 2011 (they are in the middle of a trial there currently, that we hoped to get Wyatt into but he was too young at the time). He started Deflazacort when he was 3 1/2. I'm really glad we did it, in fact I have my back to him right now and he is running and jumping behind me, that's why we chose to start early. I also believe the side effects are less. We didn't want to take the "wait and see" attitude that you are talking about. So we just spent hours on this site looking for help. I've met some incredible people on this site. I've learned alot about DMD, but also alot about myself and what "moms on a mission" are capable of.
He too is on a multi vitamin, a lot of Vitamin D, drinks Juven, lots of milk for the calcium and he too has worn night braces since his 2nd birthday. I think Cathy said it best, that she is giving her son a childhood. We don't want to put our son in a bubble, we want him to be a kid and enjoy being a kid just like everyone else. Wyatt has 4 brothers and I can't imagine him not doing the same stuff as they do for as long as possible.
As far as PT goes, we have his range of motion checked every 3 months or so, but he's doing so well. We have been doing stretches since literary the second he was diagnoses. At the time, I wasn't sure it was doing anything, but I needed to DO SOMETHING. But now I know that they make a huge difference. Every single day, we stretch w/o exception. He is of course small for 5, he's about 34 pounds and 36 inches tall, but that's okay with me, just means I can still pick him up and kiss him when ever I want without much of a fight (hahaha), Wyatt goes to swimming twice a week as well.
If you need anything, don't hestitate to get in touch with me.
Take care and GOD Bless
I have just got my son diagnosed with DMD at 2.5 yrs. he is very playfull. as he had compalined about calf muscle pain during viral the docotor actively suggested cpk and all surfaced. similar to ur son mine also takes a rest for couple of minitues and then again says no pain and runs. i am with u on continuing having as much fun we can have with them. hope to see that lasts for years...
early intervention is critical - lots you can do; make sure you LIVE STREAM some of the PPMD conference sessions; they are next week - my son is 6, dx at 2 - he has been wearing night splints since 2, so he is used to them; we do water therapy weekly with an aquatic PT, nothing weight bearing in the water... warm water is GREAT for their muscles - Levi gets horse therapy 1-2x mth, aso phenomenal for core strength & balance. Lots of home stretches - some days are better than others but we do our best to get him to stretch. He's just started deflazacort and we've seen great stamina improvment with no real side effects, but it's only been 3 mths - hope this helps, feel free to continue to reach out. facebook also has many dmd groups
Also - our boys in toddler yrs and a few yrs after WILL gain abilities as they can develop "semi" normally at times just because of teh age that they are in but all boys wiht DMD can & do present with varied levels even within teh same family with the exact same deletion/duplication/mutation
Start with balance diet and light food, physiotherapy ...