I know many families don't know till later in their child's life that they have DMD. However, if you think back (or for those that knew at birth) can you tell me if you noticed that moving your sons arms seemed to cause a problem? Our little guy just screams when we must move his arms to put them in the car seat or put his clothes on. I must release the straps on the car seat and tighten them up on him after I have put his arms in. I must also have him wear a larger size so that his shoulders don't need to move much to put his shirt on. He also seems to keep his arms very close to his chest and often people are commenting on how it looks like he is praying because he just grasps his hands and holds them tight to his chest.
Our doctor said he shouldn't be in any pain but it seems hard to ignore that he's hurting. I decided to take a video of him moaning and groaning in my arms which is quite often the routine after he is dressed. I'm hoping that if I show the doctor he might be able to give us some ideas.
Does anyone here have any wisdom to share? Thanks in advance!
Mrs. Joseph Wood (Jeanette)
Nothing like this with my son, Connor, who is now 6. The main thing I recall is how much he wanted to be with me all the time. Even as an infant, he did not go to sleep well on his own and his breathing was so incredibly shallow when he was sleeping. He wasn't a fan of the infant car seat but not in the manner you are talking about. What if this is not related to Duchenne at all? What if this is something related to his bones, such as brittle bones? I don't want/mean to scare you further, but this doesn't sound like a Duchenne thing at all. Of course, I'm not a medical expert. I suggest pursuing this further. Good luck!
Oh, thank you Lisa! I like what you said "sometimes a sneeze is just a sneeze".
I'm so happy you have some answers. Half the battle is definitely knowing. What are they able to do for him then?
Our son was diagnosed at 10 months (pretty young) and I know that he never experienced any of that. That just sounds horrible for the little guy. He is beautiful! I hope you figure out what's going on. Take care. We have 6 kids and our home is busy, I can't imagine what having 11 is like. Bless your family.
Glad to hear you found a doctor to help.
Thank you everyone. He is doing MUCH better with his headaches. He still doesn't move his arms much however, we've learned to buy bigger clothing so he doesn't have to stretch his arms. He's "discovered" his tongue and giggles as he plays with it on his lips... he's simply adorable!! We feel richly blessed.
Thank you again everyone. I really appreciate your reply!
Well, I have something similar, but still different to share. My son is a twin and was diagnosed at 2 mos with plagiocephaly and torticollis. He was extremely stiff on his entire left side and was not moving his head past midline. We started private PT and he had to wear a helmet to correct his misshapen head for a few months. I remember being completely torn apart at the thought of my little "unperfect" baby. How little I knew! I don't think the stiffness caused him any pain, and I don't think it had anything to do with the Duchenne. But, in hindsight, my son has now had PT and stretching almost since birth, which we hope will help him buy him some time on his feet as he gets older. He's only 3 and sometimes I feel robbed that we had our diagnosis so early (22 mos), but then I realize how blessed we are to know and to be able to start NOW to give him the best chance for a future. Best of luck and many prayers to you and your son.