Hi Lisa! I saw your post about starting your now 4 year old on steroids and that he qualifies for exon skipping 51. My son is 6, but will be 7 in March. I ended up starting Gavin at 3.5, with Dr. Wong. She was going to wait, however we, my family and I decided to start then at a low dose of a 6mg tab of Defalzacort daily. We are very glad we did that and that although he is small, he still grows. He has grown 2 inches this year. He has not lost strength, they have not raised his dose. We are however in the exon skipping trial and have been for a year and now and starting open label in 2 weeks. We are in the international trial in Canada. Gavin's deletion is 48-50.
Hi Lisa.I hope you and your family are doing good. I need your advise. I have 3 years old son with DMD. Here we could not find right specialist but visited paediatrician dr who never deal with this kind of patient. So we are the first patient for her. My son was taking Calcium with Vit D3,CoQ 50mg,Unjury protein mix powder,Omega3 with Vit D and multivit as a child dose. After visit our paediatrician ,she told as to give him an adult dose. I did some research in net. But still i would like to get some advise who is already with experience. Could you tell me please, what kind of supplements are you giving for your son and how much the dose? I know your son also 3 years old. I hope i can manage some how till we find right specialist for my son. I really appreciate your advise
Thank you, I have just noticed the comments, we both have children moreover the same age, praying the rescue for them will come on time. And we both live in Europe. Wish you and your family all the best.
Hi thanks for friend request,I dont come on very often don't get much time either its good to here from u its so hard when there so young everything is so uncertain my son is quite behind his milestones bless him he doesant walk yet I don't no wot the future holds im so sad at the moment I just worry so much its hard to be positive but I have to try not to cry all the time and move forwards and be strong .....so hard be good to message each other as the closeness in age of our some. Xthanks
You are so close now. Just right around the corner. I'm so sorry that you have been sick. I have just been so sore. I feel like the baby weighs about 20 pounds, just kidding. I was so much easier having a baby in my 20's. Pleasae let me know how everything goes. The hard part has already been done (IVF and genetics stuff) now you can just enjoy the reward. Take care. Have you decided what you are going to name the baby? Our baby is a boy and his name will be Carter. I hope to talk to you very soon Lisa.
Thank you so much, Lisa! I appreciate that very much. I am 7 weeks, it seems like so far to go. Christmas Day, what a beautiful day to have a baby. How exciting. I don't know the sex of the baby. I do know however that when we did IVF they put 1 girl and 2 boys back into my uterus. I'm still so amazed by the whole process (PGD - testing for DMD before becoming pregnant, that's unbelievable to me) So I guess the odds are in the favor of a boy. I would love to have a baby girl (my only daughter is 16 years old), but I adore my boys and boys are so easy to raise. I am so glad to hear that Seth is doing well. he's about a year younger than Wyatt. Is Seth talking much? Wyatt doesn't stop, I love to hear their little baby voices. I am like you, right now all I can do is pray, and I try to raise money for research too. We just have to have faith that some smart scientist out there is going to find a great treatment and I truly believe that a treatment is right around the corner. Thanks for the well wishes, I still feel pretty sick most of the day, but that will end pretty soon I'm sure. Good luck with your new baby and keep in touch.
The info you provided regarding stem cell treatments for MS patients is interesting in that the clinic in Costa Rica that we go to, primarily works with MS patients. We have met several while down there and they have had great results. They have only treated 3 boys with DMD. Ryan and Ian from the video and a 7 year old boy from Venezuela. Don't know much about the 7 year old except that his CPK levels are now normal.
Hi Lisa from one Seth's mom to another! I'm sorry it's been a while since you said hello to me. I sort of run hot and cold with this site. Your Seth is SO cute! Mine had redish hair when he was a baby too.
Hi, Lisa, my name is Melissa and my 15 month old was recently diagnosed. I agree with Veronica, I too was afraid to come on this site. I've been told over and over that Wyatt is so young to be diagnosed. I hope that we can continue to communicate through this journey. Since our boys are approx. the same age, I'm sure we will have a lot to talk about. Please go to my PPMD page and read about Wyatt. He's our incredible joy. We are so blessed to have him. We had no family history either. (until now, we found out in the last few days that my mom, myself and my 14 year old daughter all are carriers.) The incredible part of all this is I come from a family of boys. I'm feeling like the girls in my family (until Wyatt) took the hit for all the boys. Please do keep in contact, I know it will help me tremendously. I've met some people through all of this and it doesn't make it easier, but it really does help. Best Wishes.
Hi, Lisa! Great to hear from another mommy of a little one with DMD. To tell you the truth, I've been avoiding this board a little bit for a couple of months. Sometimes all the posts about older boys make me so sad, so I decided to give myself a little break. I'm slowly starting to come back to the board every few days.
Max just turned one and is doing great! He's behind a bit in gross motor skills, but sees a physical therapist twice a month and is catching up. How's your little boy? Do you guys have a family history? He's such a cutie!!
How are you? My son was diagnosed through newborn screening a year ago. He has a deletion of exon 50. I kind of remember that your son has a deletion somewhere close. Robert is now 17 months old. Like you, I was terrified about cognitive problems after reading these site postings. So far he seems right on target, no cognitive problems. He started walking at 15 months and is not falling that often, only when he is tired. He seems fine so far. I do know how hard it is...Try not to read all this postings, each boy is different.
I am now fighting the doctors to start PT, they seem kind of relaxed about that. They seem to think that he is too young and doesn't show symptoms so we don't really need PT but I want to do it anyway.