I'm glad to hear that you guys are all on the same page. I don't think that my son's urologist had ever had a patient with DMD before so he now has some. We also had to deal with my son's seizure issue, his Vagal Nerve Stimulator (think pacemaker, but for the brain) and a procedure using ultrasound. We thought we had all the bases covered, but like I said I am truly thankful for an anesthesiologist that was on her toes and not afraid to speak up.
Make sure everyone is on the same page as far as what anesthetics are safe and which are not. Best bet is to schedule the procedure first thing in the morning. My son had a procedure for a kidney stone canceled because the anesthesiologist refused to put him under with our purging the machine for a few hours to make sure nothing was in the lines that might cause a reaction. I thought we were all on the same page, but we weren't. I was so thankful for that anesthesiologist. --Susan
My name is Velia, and I just want to say that my son Joshua is deletion of exon 8, just a few months ago we found the disease last September, is still not medicated, we hope to god that this disease progress slowly, but feel that you very fast. Joshua meets 9 years old on April 6, God bless.
Thanks for your note. We are doing ok - hanging in there. Christopher will be 3 in May so our boys are about 1 year apart. My daughter Gracie will be 5 this spring and she is always thrilled to meet other little girls her age! It would be great to meet you all sometime soon when all the Colorado families get together! Pamela
I just got a chance to catch up on the blog and wanted to tell you what a wonderful smile of joy the pictures of the kids brought! We had a tough day here and the joy was needed! Tell Hazel Happy Birthday from one special birthday girl to another - I also celebrate my birthday a week from today. I have another number after my 4 though. ;~) I wish you all the peace and rest you deserve this holiday season!
Hi Ivy. Thank you for sharing your story about Rain. While Karsten is not delayed in any way now, he was slow to reach his physical milestones. I worked with PT and OT to get him up to speed. He was 14 months before he took a step and it was several months more before he could really get around on his own. Most days he is still pretty unsteady, lots of tripping, falling to his knees, and there have been several scary head bumps from falling down in the last few months. I also notice that some days he tires more quickly than ohers, even taking an extra nap late in the day. In comparison to other boys his age he is slower and not as agile. While I worry these things are signs of muscle weakness, his doctors say it is all very normal for a boy his age. If I did not know about his DMD, I would just think he was very clumsy. I have just started to think about supplements and I wondered if you got advice from a nutritionist before you started Rain on supplements? I'm not sure how to begin introducing supplements into Karsten's diet. I know there is no research to show that they work, but there is no reasearch to show that they don't either.
Our appointment at the MD clinic went well today. Karsten should be back in physical therapy by February, and for now the clinic checkups will be every 6 months.
I hope your pulmonologist can help Rain with his snoring and apnea. I am sure, like my boy, Rain is much happier when he sleeps well.
Hi Ivy. My name is Jaime, my son Karsten has DMD, he is 21 months old now. I am not a carrier, Karsten's disease was a mutation. We found out only by accident through some blood tests when he had virus. Those tests showed abnormal CPK levels, so we were referred to genetic testing, and here we are. This all happened before Karsten was 5 months old. So there's a little history of us. I am writing becuase our sons are so close in age and I would like to keep in contact with you guys. I would like to share information from our sons doctors because I am very interested in what other doctors have to say about treatment/ preventative care for our young boys. We have recently moved to Houston, TX and out first appt with the MD clinic here is tomorrow. I am very excited to meet Karsten's new team of doctors. Would you share with me what Rain's doctor's say about him? Are you involved in any treatment or physical therapy?
Thank you so much for your advice and am glad that with Dylans story we were able to help your family. It's so scary that many doctors, and nurses wouldn't expect a baby or new born to have DMD because we experienced that frist hand. After we found out that Dylan had suffered from DMD that same day we went by the NICU which had been his home and donated all his new things since they were very much needed at the hospital and some nurses were kind of shocked that he had DMD. That's why we have become firm believers that more research needs to be done for this disorder and we are working on getting as much awareness out as possible, but I have learned that it isn't easy
I love the picture with the End Duchenne bracelets... I also have one of the older "I Will" bracelets - so I was going to "steal' your idea as well, but have one wearing the old "I Will" bracelet and one wearing the new "End Duchenne" so it will read "I Will End Duchenne" when you look at it. I hope it will come out neat looking... then I need to figure out how to photoshop the grey layer...
Sorry we missed you today at Blue Bonnet. We hung out from 11:45 - 1:15, but then had to run because I forgot to bring Jack's 1:30 meds with me. I hope all went well at clinic today and that we get another chance to meet you all. Have a great weekend and enjoy the beautiful weather!
Hi Ivy-- I am sorry that I took so long to relpy to ypu post. I don't know how I missed it in my email.
I've been all over this site, so I'm not sure how you found me, but I'm glad you did. I am having a hard week, so my heart is especially broken for you and Rain (as well as for all of us).
I am starting Jordan on steroids next week (deflazacorte). I am praying that it increases his strength enough to make the steps easier for him. That is his main difficulty right now.
Your family history is amazing. I am not a carrier, so Jordan was a spontaneous mutation. I just pray that we keep him as well as he is now until the drugs come along. Some days I am optimisitc about this, and other days I am in full out despair.
I will keep in touch (and promise not to always be such a downer! Sorry!!).
When Jack was two, he got speech and PT through Childfind. I really helped to start getting him used to stretching with a PT early and also helped to work on safely developing his gross motor skills. It is covered by the state and in our county they were able to come to our home, on our schedule each week. I think that really does contribute to how well Jack is doing today!
I was just reading your questions on Medicaid waivers. Rain will need to be older before he qualifies, but there is a lot of help for birth to 3 years in our state.
Jane Haack-DeBroux (child find coordinator)
703 E. Prospect, Fort Collins, CO