Hi. We're in the Lodi area. We are not super active on the site. Just trying to take things one day at a time. I see that your son likes baseball. Justin does too. Maybe our families can get together for a Mallards game next summer. Justin is 9 now and enjoys playing baseball. We make an imaginary shortened infield in our front yard, and he is able to make it around the bases when he hits it long.
First off, CONGRATS (early) to your new arrival. We live near Hudson WI. I do have a sister that lives in Madison. Our son was diagnosed with DMD in Oct 08 when he was 4 1/2. How life has changed for us in the past year. Really for the better, oddly enough. We were such busy people but this diagnosis has taught us that the most important thing in life is the time that we have together no matter how long that time is. I was tested and I'm not a carrier so we to hope to have more kids in the near future. We travel to the madison area about twice a year, maybe we could have coffee.
My little boy also has deletions 45-50. It is, I believe, one of the most common - occuring in the major 'hotspot'. The good news is that the very first treatment available - patch 51 - (both UK AND the Netherlands trials) will specifically target this deletion. It'll be ' the first cab off the ranks' so to speak. In addition, cases of Becker comprising deletions 45 - 51 (which is what our boys will have after the patch) are known to have only the very mildest of symptoms.
My son is 10 months old and has no development delays. He rolled, sat, crawled early. Is talking early and looks on the verge of walking. He has been psycholgically assessed as advanced for his age. We only know about his diagnosis as a newborn screening process operates here in Wales.
I, too, have heard that deletions 45 - 50 are a the milder end of the scale. Lets pray this is true and that it buys time until the treatments are in general use.
Wow that is a lot in February, Wyatt's is on the 22nd of February. You and your sister have the same birthday. Cool, you're not twins are you? At first I thought you must be, but it's possible that you just have the same day. Ethan will be here before you know it. Only a few months, and this time of the year it will fly by. Good Luck. Take care.
Hi Candace. I am sorry to hear about your situation. I do have 2 sons with DMD they are 7 and 10 years old. It has been 4 years since they were diagnosed and they continue to do really well. I don't know if their deletion (45-50) is the reason that their condition is mild, but I hope so. I am a carrier of DMD, my mom has not been tested but I believe she may also be a carrier because she has carrier symptoms like I do. The condition is only carried on the maternal side, so unless your father has DMD the heredity cannot come from that side of your family. I have found that some really strange conditions other then DMD run in my family, and I am not completely convinced they are not somehow related. We have mild cardiomyopathy, other 2 other muscle condition in cousins, and pseudocholinesterase defiency (unable to take inhaled anesthesia). My children's doctors are "looking into" a possible relationship of these conditions. I saw that you have been pondering steriods for your son. I started steriods at age 7.5 in one son and around age 5 in the other. Had I known what I know now I would have waited longer for the second child to start the steriods. There are so many side effects, I would have let my youngest grow a bit taller prior to starting the steriods, as they nearly stopped their growth. But having said that the steriods have helped my kids maintain their stength and abilities. Who do you see for a doctor? We go to St. Paul and they really are pretty good there. You will find that you need to know what to ask for and advocate for your son with each medical appt. If your doctor does not know about steroids/ tests/ treatments then you will have to tell him what needs to be done for your child. If I can help you in anyway please let me know. Also, I just want to say that I hope your unborn son does not have DMD. But I am grateful that my sons have each other to share their condition with. They have someone who knows what the other is going through and they are never along with their diagnosis. They can sympathize with each other and they can help each other cope. It is hard and it breaks a mother's heart, but just know that you can handle it. The grieving over the diagnosis does not last forever and the pain does get less as time goes by, but you have to allow yourself the time to go through the grief process. It took me a few years to come to terms with it, now I am stronger then I ever imagined I would be 4 years ago. Make sure you take the time to enjoy your pregnancy and little Joseph. Please let me know if you need any advice, or have questions about DMD or deletion 45-50. I would be willing to share my boys medical experiences with you, maybe with the same deletions there will be similarities between your son and mine.
Congratulations on another boy. That probably makes you a little more scared, but I will pray for you. It will all work out! Think positively. Ethan is an amazing name. Did you know it means "strong one" in Hebrew? You couldn't have picked a better name. Let me know how it goes, just a few months left right?
So it wasn't H1N1. Things have been pretty hectic lately. I'm off Friday and Monday though so I get a nice long weekend. My boyfriend and I are celebrating our 2 year anniversary on Monday and we also have the ultrasound for the baby on Monday. I still think it's a girl but my boyfriend doesn't believe me. We'll see what they say on Monday!
What? Really? You have so much to deal with already, with JoJo, doctors, appts, the new baby, everything, now this, enough is enough. Your plate is overflowing. I hope you catch a break soon. Take care of yourself and get well.
I'm so glad that you found someone willing to help you. Finally!!! Hopefully it will be sooner than a few weeks. You never really know though. Hope your kidney issue clears up soon. It's been a rough week for us. Wyatt has been great, my other kids are having some health issues (colds, runny nose, asthma etc.) My oldest son has his first seizure in 3 years, so that was a tough way to end the week. He's doing okay now, but still not quite feeling himself. He's been off medication for about 10 months, so now he has to start again, which is going to mess with his system until he's used to it again. On a good note, I spent the day Saturday with a very good friend. We had a booth at a community fair and I educated people about DMD for about 5 hours. It felt great to get some information out. Have an amazing week. :) Melissa
Hi Candace, I just read your profile and wanted to let you know that on facebook there is a large group of us (mainly in the UK) but we are pretty much each other's lifeline. Our boys range from newborn to 25 and whenever we need advice, a rant, a shoulder to cry on, or just someone to listen, we are all there for each other. If you want, look me up - Sharyn Real Thompson. I have a son called James - he is 5 years old and was diagnosed just after he turned 2. We have had him on steroids (first prednisone then deflazacort) since his diagnosis. Anyway, if you want to chat about things, you know where I am. xx
How have you been doing the last few days? I've been thinking about you a lot. I hope things are getting better with the school. That's a tough one sometimes, be strong, you can do it. I KNOW YOU CAN. (That sounds a lot like The Little Engine That Could. hahaha)