"No Problem. You it's not easy, It seems that we need to be in fight mode for our boys. It's hard to turn it off, at least for me. I am always ready. I tell the teachers not to take it personal. They know we are our kids biggest advocate.…"
"We as parents have a big voice for our sons. If I were you, I would make sure that the teachers and principal are fully aware of the behaviors of other children that are affecting your son. These kids need to learn what your sons condition is. MDA…"
"My son is 6 and not on steriods, he has behavior issues. We even did Parent/Child Interactive Therapy. It is part of Duchenne, he also has sensory issues, academic issues. Don't get me wrong part of it, is just being a boy. We have chosen not…"
"I know, I wish more people would be more active on this site. I could use more emotional support. We are all going through or will go through similar issues. Sorry to hear that you have not heard back from the Ohio study. Gavin is going to CHOP for…"
"I am not sure how to respond to the news I got today. I have three kids. When we found out that Gavin has DMD back in 2009, it was devastating, then I found out I was pregnant in 2010 I decided to get tested,I am a carrier. I knew then that the baby…"
"Please tell me what the symptoms of a manifesting carrier is. I have been having chest pains for as long as I can remember and they seem to be getting worse. I have these episodes where I feel like my heart stopped for a sec. I even sometimes feel…"
"I am not sure if I am a manifesting carrier. I have not met any doctors that even knew what DMD was. I think I am though. Prior to finding out I was a carrier, I had begun going to a cardiologist. I have tachycardia, as the doctor put it leaky heart…"
"Gavin will be 5 on Nov. 3. He is starting to walk on his toes, more on his left leg then his right. He falls sometimes, and nothing is in way. I am not sure if he gets embarrassed, but when he falls, he says someone pushed him even though no one was…"
"You definitely need to talk it out, with your husband, family, friends, pastor, etc. I have times where I feel very guilty. I find myself letting Gavin get away with things, but that is not the answer. Kids definitely need discipline. Go to church,…"
"Unless your son can't walk at all, I would hold off on any medical strollers. I have a 4 3/4 year old and 10 month old. I purchased a sit/stand stroller which allows the older to sit and or stand in the back and the baby to be in the front. I…"
I am a mother of 3. I am married to my wonderful husband Sean, we have been married for 15 years now. I am athletic, my favorite sport is volleyball. I am a United States Air Force Veteran. I served from 2001-2005. I am 1 of 7 children and have a fraternal twin sister. I am a confirmed carrier of DMD.
About my family:
I have 3 beautiful, and smart children. Skyler (15), Gavin (10), and Jaxon (6 yr). My husband Sean is a hard worker and enjoys his job. Gavin was diagnosed with DMD back in Sept 2009. We found out by accident because he stopped growing and the doctors ran blood tests. It took from April 2009-Sept 2009 to find out. We had Jaxon tested December 2010 and unfortunately his test came back positive. We are trying to get ourselves as educated as possible with this disease.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
Comment Wall (6 comments)
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hy,Kristin,i have 2kids too with Duchenne,i`m sorry you are in the same situation,i understand that you are confirmed carrier of DMD,i am too,i wanted to ask u if your girl is carrier too .if u want we can talk about this.good luck for u,for me and for every child who need a miracle.
hi kristin - how far are u from Toms River NJ??? a great friend of mine, lives there... her youngest has DMD. We found out 1 yr ago... i couldn't cope for many months but now am much better & have learned to get thru each day w/ grace & strength.... some days easier than others. call anytime 717-821-5666 cell - we are goingt o PPMD conference in June - I highty recommend it. xoxox
To be honest, I think I took the original diagnosis better than my husband; obviously, I was still devastated, I still cried, etc.., but I tend to approach difficulty with a very detached attitude (probably some kind of a defense mechanism, I am sure). That said, it was almost worse watching my husband react to the news than it was actually receiving it. There is a good thread on here someplace about dads and how men tend to react differently to crisis than women, particularly when it is something affecting their children. We have no family history, and turns out I am not a carrier. So looks like we just got the short end of the stick on this one, I guess.
This is all new to you, but I think you'll find as you read posts, and do research that you will come across many ways to deal with this new life plan you've been handed. Some families become very involved in gathering all the research they can, some families ignore all that and focus entirely on their child's day-to-day-life, and still others blend the two. None of these approaches is wrong, you have to do what is best for your family. No matter how you approach it though, remember that your son still has a wonderful life ahead of him full of great things to come. It is difficult at first not to see everything through the prism of what lies ahead, but you will miss out on so much opportunity and living if you focus entirely on the future. It's there, it's coming, of course; but in the meantime, you've got the first day of school, teeth to lose, learning to read and ride a bike, great vacations, and other wonderful things, all of which deserve to be celebrated and enjoyed to their fullest ... like expanding your family!! Congratulations, by the way! It's a whole new dynamic being a big brother, my son can tell you. :)
Hi Kristin. My son was diagnosed a little over a year ago when he was 8. Similar story, I began looking for answers about Cory's gait and large leg "muscles" when he was 5 and only found an answer through a chance remark in an email that was accidentally sent my way from the autism specialist at the school. You see, one of the many diagnoses for Cory included Asperger's Syndrome because he shows some behavioral problems. When Cory's diagnosis was revealed I had myself tested and am indeed a carrier as well. I live in a fairly small city and have found very little information about Duchenne here. Thanks to our PPMD community I have been able to re-learn how to function now in this new segment of our lives that includes Duchenne. I cried non-stop for 3 months after diagnosis. Now, more than a year later, I cry less and learn everything I can about Duchenne; I continue to look for that balance between loss, love, sadness, and joy and somehow life just unfolds. You have found the right place to look to when you need people to really understand. My heart goes out to you, allow time for tears, they will help you to heal.
Kristin, I am sorry you had to join us, but I know you'll find the support you need here. It really helps to know you are not the only one going through this. My son was diagnosed a little over a year ago when he was almost 5. We had noticed nothing "major" either - he was delayed walking, that was about it. And of course he had big muscles (we called him our little superman) but it just seemed like he didn't know how to use them, which suprised us. For a few years we operated with a "learn to use them" mentality (all of us, including therapists, pediatrician, etc.) before a school PT told us she suspected something else was going on. It was devastating, and I can understand your feelings of wanting to crawl into the nearest hole and stay there until it's all over. Come out when you are ready - everyone will be here to help when you do. Take care.