I have my 14 and 16 year old boys with the dmd and I have always taken baby steps so to speak when dealing with the different stages of this dmd.  I know that my 16 year old has begun to show signs of his back muscles weakening and I know that scoliosis is beginning. I also know that around that time there is a possibility of internal muscles also weakening.  My boys are pretty fatigued by the time 9pm rolls around during school days and they used to see how long they could stay up during the week ends but they are just getting more fatigued.  I am concerned about this and I would just like to have other parents give advice because my husband and I have always done the most when it comes to prolonging these things and now that it seems prolonging has helped but now we are facing the inevitable (scoliosis) and I need other parents to help get me through this.  My husband and I want to stay strong and pass that strength on to our children. We are going to be seeing the doctor's again and they are very helpful.  I thought that maybe adding myself to this website that I could maybe explain my feelings and hopefully other moms have some good advice for dealing with this stage of my childrens dmd.  Overall my boys are in good health and we haven't had any major problems with the dmd so far.  They were diagnosed with aortic valve regurgitation about 2 years ago and that has greatly improved.  I thank any parent that may be going thru this part of dmd to give any suggestions they may have.      

 

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Hello Cynthia,

My sons are 15 (Almost 16) and 18. Both of my boys have DMD. My older son had Spinal Fusion Surgery when he was 13 and had a relatively smooth experience. Yes, he is weaker, yet that began once he lost the ability to walk. It has been over four years since his surgery and he is still able to feed himself. He relies on my wife and me to help him with most activities of daily living, yet his spirits are great and he does well in school. He tells us when he is tired and ready for bed and enjoys sleeping in on weekends. His brother is significantly stronger and we are optimistic he will not need surgery for scoliosis. They both spend time reading, staying current with friends on Facebook and playing video games. When the weather is nice we make sure they spend time outside. We live each day as it comes and are honest with our sons about their condition. Nothing is guaranteed, yet we are planning for college to the extent both are able to participate (full or part time).

I am pasting a reply I wrote for another family about our experience below you might find useful. Also feel free to contact me if you have concerns or questions.

Best regards,

Brian Denger

My older son, Matthew, had this surgery October 2005 when he was 13. Remembering that each boy is different I wanted to offer my perspective from his experience.

He had his surgery at the Shriner’s Hospital in Springfield, MA. The orthopedic surgeon had done around 300 back surgeries on children with many disorders including DMD making my wife and me more comfortable with the decision to go ahead. The time between learning he needed surgery and the actual surgery was about six months. We took time to ask others who had the surgery about their experience to prepare ourselves.

Two weeks before surgery we had pre-op testing, blood work, Cardiac and Pulmonary Function Tests to ensure our son was as healthy as possible and the surgeon had the information if things were “less than ideal”. There is a narrow window where decreasing lung function and increasing curve reach a point where many surgeons will not do surgery. Matthew’s lung function and other tests came back fine, yet it was still quite difficult for us to know our son would be undertaking such a major surgery.

The evening before surgery we checked in to the hospital, showered and prepared him for surgery and they did more testing to be sure all was O.K. The morning of surgery was difficult for us all. We understood the gravity of the procedure, yet realized the benefits. It took about five attempts to get in his IV due to contractures and small veins with a doctor deciding to place it in his foot as they do for infants. The surgeon came in and checked Matthew over on last time and my wife and I left to wait.

The surgery lasted just over eight hours. I went running, taking my cell phone and when I returned my wife went to the gym. Taking breaks is important for your sanity. The doctor called us in a short time after a nurse told us Matthew was in recovery. He explained everything went well. Matthew’s vertebrae were not brittle making attachments more solid and there was not as much fibrosis in his back muscles making the procedure easier. Still, Matthew had two rods, six hooks and ten screws inserted. Going to see him in recovery was also hard as he was on Bi-Pap and very uncomfortable.

Over the next few days we stayed with Matthew helping the nurses move, feed and care for Matthew. He was a very compliant patient and also didn’t need near as much pain medication as most children having the same procedure. I compare this to the time he had tendon release surgery and Matthew had less pain and while it was very different in other ways he had less pain with this surgery. We had been told he would have to stay ten days to two weeks, yet because we participated in his care and as Matthew did everything asked and didn’t need high doses of pain medicine we were allowed to go home after six days.

Matthew had to wear a plastic body brace for about two months, yet he developed a rash and the surgeon said he didn’t have to wear it as the incision had healed well. He returned to school after seven weeks. We did not have any problems with him being able to sleep. He had been getting me up four to six times a night and it was no different after surgery.

I know others have had less ideal experiences, yet planning and educating yourself and your son before the surgery helps prevent anxiety and makes it easier to deal with the whole process during and after. Matthew still is able to feed himself and his Pulmonary Function Tests have not decreases over the last three years. He sits straight and is more comfortable then before the surgery. So I will end by saying the procedure was very beneficial for him.
Wow Brian--what a helpful detailing of the spinal stabilization surgery. I hope many parents have read this. My son had the back surgery at age 18. We had thought he would be one of the ones who could avoid the procedure, but it wasn't to be. They tried to kick my son out of the hospital at 5 days, and we held out for 6 to make the change from a morphine drip to oral pain meds. At 5 days they took off the morphine drip and gave him 2 Tylenol. That was not effective! He needed strong pain meds for about 2 weeks, than we tapered it off slowly. He also wore the "turtle shell" brace for somewhere around 4 months I think. He had become somewhat dependant on the shell to stabilize him and gave it up slowly. We did it during the summer so he wouldn't miss school. He went to a camp on a University campus for 5 days after about 9 weeks. It was hard,as he still needed bed breaks, but he did it. We hired an aide to go with him. We are glad the procedure was done. He sits more comfortably in his wheelchair and probably breathes better than he would have without it. He is now a software engineer and able to work full-time. He uses a HeadMouse and a NIV "sip vent". He is 29.
Hello Cynthia,
i have a son who just turned 26. So yes we have been where you are and beyond...of course you know your son's personalities best and you and your husband are doing great. i is just hard. Communication is vital. Your sons know before you that there bodies are changing and their "status" is changing....they need to be able to talk about there changes and know you are there to listen when we have these unknowns facing each of you. The fact their bodies and status is changing and not talking about it maybe more damaging then discussing it. i has got to be so scary for them and they need a strong figure like you and your husband to guide them. If you do not have an answer ...admit it but all say they are never alone. Also stress that just because tthe medical books say this or that ...that does not mean it is going to happen to them......I do not know if this helps or not but please know I understand and you and your husband sound like you are on top of the situation and that is great....i kinda handled my sons gauge like you would the subject of sex. Only answer what they ask and don't add the extras unless needed.....it has been a pretty good gauge. warmly lynn
I thank you and everyone else for your support and we have a really good relationship with our children. Also since I now do not feel alone in our quest I have now begun to look for the positive in every situation because my boys have been very blessed with their health and we have again always practiced preventative measures and the boys understand that it is necessary and that has made them very strong. My daughter will be tested soon to see if she is a carrier of the dmd gene and we have had many talks about both possible outcomes and she is in full acceptance of whatever the results may be and although we as parents aren't as good at dealing with this dmd our kids are amazing. I was not aware of even having a history of this in my family and at least now we have done the right thing by keeping all of kids informed of the possibilities. Over 2 years ago I was diagnosed with Graves disease with the over active thyroid/hyperthyroidism and finally I have my thyroid stablized but may have to do one more radiation treatment. The positve to this is that my thyroid is not cancer. I hope you continue to spread the word so that other parents who were where I am will appreciated the support. I hoped my topic would not be too much but I realize that we are helping others who may not want to share our emotions maybe that is the best thing to do. Again may god bless your family.

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