My son will be 3.5 in September. Yes, we do see Dr. Wong and Gavin is doing really well. One reason we are deciding to start early is also because I actually had a cousin that had DMD. We know that he lost his ambulation around 9 years old. He passed away 20 years ago and never had steroids. Anyway with that information and the fact that Gavin has a deletion of 48-50, which would mean exon skipping 51 would benefit him. We decided to try a low dose to preserve as much muscle as possible, he is currently presently mildly, that is what Dr. Wong told us. So we decided on 6 mg of Deflazacort. We will be starting very soon. In fact I was just at our pediatricians office today and I was making sure he had all of his live virus immunizations. He got some early and is ready to start. Not an easy decision, but we know all the boys will need steroids. Your little guy still has some time I bet. It's really nice to know that early, we did too and he started supplements, streching and night splints right away. We didn't get into see Dr. Wong until the month Gavin turned 2 so we started everything besides steroids then. He takes everything even Haelan 951 easily, no fighting us what so ever and wears the boots at night. So I'm very glad you found out early, that's wonderful.
I hope Holly is feeling better and does not pass it to everyone else. Hopefully you can make the next meeting . I am not sure when it will be. We had a great time meeting new families and exchanging info. Our Cinci visit went well. Nicholas has not declined just have to work on tightness in hamstrings heel cords and forearms. Labs and other tests looked good. Thanks for asking.
Hello! Ella knows that Keelan's muscles are sick, but that's about it. She does know that he will (unless something changes) be in a wheelchair someday, which she so far thinks is 'cool'. So, yeah, she doesn't really get it.
Keelan started taking steps at 20 months and walking at 21 months (recently!). It seems his stages are months, rather than the week or two it takes other babies to reach their milestones. The way I look at it recently is that I know he will catch up and I'm blessed with more baby time! My friends w/ babies keep saying how quickly the stages went and they don't even really recall them. I'm lucky enough to enjoy each stage since they last longer. The really wobbly falling into everything stage was not easy though!
Hi! I just saw your post and noticed that we have kids the same age. My daughter Ella is 4.5 years and my son Keelan is a baby too, 21 months. We found out by accident when he went for a follow up w/ a gastroentonologist. How did Max get diagnosed so young? If you don't mind me asking, it's ok if you would rather not answer, I totally understand! We were also told that Keelan's "Innocence was ruined" by a neurologist (well meaning!). Thankfully, we don't feel that way. We feel blessed to know so we can work less, plan and enjoy more!
I hate to hear that other little baby boys are struggling (or will be) with this horrible journey that lies ahead, too. But like you said, it's also a small comfort to know that I'm not alone. I've just heard over and over he's so young. That's hard for me. So it's a double edged sword, I'm happy to meet other moms with babies, but I also wish I could just take the DMD away from these precious sweethearts.
Our doctor in Seattle (means well) basically made us feel like we missed out on "blissful ignorance" (his words not ours). I have no doubt that Seattle wants what's best for him, but they are not aggressive. They take the wait and see approach. I can't wait and see. Even if it's as simple as a vitamin at least I'm doing something. I can't look at Wyatt in the face everyday if I don't try to do absolutely everything I can for him.
I have heard the living carrier to compare to thing for another mom I met on this site. She was given the same information, basically. From my experience, my genetics counselor said it's easier to find the mutation, if you know what you're looking for, but it's crazy to me that they couldn't just look at the Duchenne gene, yeah there are 79 exons, but that couldn't be that hard to test.
I understand that "off my plate" the more when can check off the better.
Well, I can also understand personally why 50/50 is good odds for max. I have 4 boys and only Wyatt has DMD. So we beat the odds. I was talking to my 12 year old son yesterday about the 50/50 thing. I could totally see his mind racing. He did the math that only 25% of our boys have it. So he said to me, which one of us (out of our other 3 boys) is going to get it. I obviously had to explain that it doesn't work like that. My older kids have come up with so many questions that I would have never imagined. That has been helpful for me because then I can find out the answers.
I'm sure you did worry constantly. Everyone tells me, it's good to find out early. So even though it's hard to look at a seemingly healthy baby (I actually forget sometimes, for a second or two, but forget none-the-less), we think us finding out early was a good thing. Our 14 year old is a carrier (found out last week). if we had found out about Wyatt when it's a typical time, she could already have been married and possibly having kids. (she'd be like 20). We say Wyatt is protecting his future nieces and nephews.
Wyatt's deletions are 49 - 50. Which (if it works, cross your fingers) means that Max and Wyatt are both canidates for Exon Skipping 51. Which is great news. Now the scientists just have to get it to work. It's very promising though.
I don't really get SAD, I'm just so MAD. I'm sad for him, but I'm mad too. When we were in Cincinniti everyone said you seem to be handling this pretty well. I think that's because I can only be mad for so long. I want when Wyatt's 25 years old for him to say to me, thanks mom, I know you did everything you could for me. Sitting around crying isn't going to help Wyatt, and that's my goal here. About 2 weeks after his diagnosis I have a serious breakdown and I decided that day would be the last day he would see me CRY. I don't want him to be a bitter, unhappy person, I want him to beat this DMD and be stronger then it. If he sees me upset all the time he'll know he's different. I want his life to be as normal as possible for as long as possible.
It took me a while to come to this site too. All the kids were way older and had huge challenges. 5 years from now DMD will not be the same disease as it is today. I want to live for today and meet Wyatt's challenges as he faces them. Every kid is different and I don't want a preconceived thought about what he will be like. Don't get me wrong, I'm realistic. But I want to enjoy him now and forget about DMD occasionally.
Have a wonderful day, and please let me know how Cincinnati goes.
Like I said yesterday, when you meet her, you will understand. My husband calls her YODA, all knowing DMD doctor. She's incredible. We've only been home less than a week and SHE's (not her assistant) emailed me multiple times about tests results. I'm off to take kids to school. I'll chat with you later today.
I'm so sorry to hear about Max. Do you know what his mutation is? I learned early on (a whole 4 months ago, seems like a long time) that knowing his mutation is helpful for clinical trials, etc. I've also heard that most trials won't take kids younger than 5, if you hear otherwise will you please let me know. Wyatt is 15 months old. He was diagnosed at 10 months. Max is so young. If I can ask, how and when was he diagnosed? We are just so fortunate that Dr. Wong could take him as a patient. It's so hard to discribe, you won't believe it until you see it. I can't explain it good enough to people. I hope your visit is as great as ours was. Wyatt was diagnosed by pure dumb luck. We went to the doctor for Failure to Thrive and from 5 - 10 months old, we did test after test, after teat. Max is very young to be diagnosed and at CCHMC they will say that over and over, especially it there's no family history. We had none, until now. Many months later, it's been determined that my mom, myself and my daughter are all carriers, before now, our family had never dealt with DMD. Please keep in touch and let me know how it goes. Please add me to your email list. Best Wishes.
Thanks for mailing me back. I don't come on these sites very often either. It upsets me too much.
No, we have no family history of DMD and I'm not a carrier. I tried for years to get pregnant and eventually had fertility treatment. It seems so cruel for this to happen....
Hi! It has been awhile! I just wanted to check in with you and see how things were going with you. Neel is doing well. He is going to be serial casted again next week. Hopefully that goes well. How is Max doing? Your pictures are awesome! Keep in touch.
Hello, hey how's going? Ya, we aren't fans of the Longhorn.....Adam got the shirt while in Texas for the Home Interiors Seminar we went to in 2007!
Guess Ron White is from Texas!
I used to be a regular member here, but got busy with other avenues and amd glad to be back. Would love to keep in touch with you and others living with Duchenne everyday! I am my son's 24/7 caregiver ( I am a certified nursing assistant, worked in people's home thru Visiting Nurses and in local Nursing Homes ). You can e-mail me at: firstname.lastname@example.org ( because we help others raise funds for their causes, just like how we raise money for our cause )!
We had a few years of not liking Santa, too. I've got a classic picture of the boys screaming, each on knee, with Abigail in the middle with the most angelic smile. It's just hilarious. It's so much easier now that they're older. Jake's very shy, so he didn't talk much, but I did talk him into sitting on his knee so the we could get them all in the picture.
No, you didn't creep me out. I love meeting others from PPMD. I had thought maybe you'd recognized Sam from my pictures.
Santa went well. No line at all. Last year we went to the Woodlands Mall and waited over 2 hours. It's only about 10 minutes more of driving for us to get to College Station, so we decided we'd have a much better time up there.
I just saw your note about the MDA parent get together. I never go to those b/c I'm always working at those times. I work Tuesday through Thursday. If they'd ever have one on Monday or Friday (or, gasp, even a weekend) I might actually go to one.
Once the holiday madness passes, we'll have to have y'all down to our house for dinner some time.
Hey thanks! We had a great Thanksgiving. I'm glad that you enjoyed your trip to Elk Grove. I tend to overpack everything (including the diaper bag for doctor appts) as well. I'm sorry that your family asked you questions that you were not prepared for. But really they have no idea what it is that we are going through. Stay strong and make sure you enjoy the holidays. Take care.
I am sorry to hear about your gorgeous little boy's diagnosis, it is always hard to have someone else join the PPMD family knowing that they have gone through heartbreak to get here. But we are all here for each other and that in itself is reassuring when noone else seems to understand how we feel. I hope to get to know you and see more pictures of your gorgeous little boy Max and the rest of your family. You will never be alone here.