dmd and depression
My son Cody is 10 years old and has dmd. He seems depressed here lately especially since he came home from camp last week. In the car on the way home from camp he started crying and said he didnt want to stop walking! We were very upset by this and confused because last year he talked the whole way home about how much fun he had! It seems here lately that we have a hard time finding things that Cody enjoys doing. He sometimes seems unhappy and upset! Does depression/anxeity go along with dmd?Has anyone else had any issues like this with their son?
Replies to This Discussion
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Permalink Reply by Samantha Dearing on
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Justin is 14yrs old now and we have gone through depression issues on and off through the years. As they lose abilities, I think it can hit some boys really hard. Justin goes through times of just crying all day long for no reason. He wont play his video games, or talk to us much, or do anything but sit there. We had Justin seeing a counselor regularly for a time period and he was on antidepressants for awhile when it was really bad. He was slowly weaned off the meds and released from his therapy sessions, but we still watch closely. A good therapist is a great thing for the boys. Justin could tell them thinkgs he didnt want to tell us cause he was afraid to upset us. Hang in there!
--Samantha
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Permalink Reply by jenn on
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austin is 11, his reaction to dmd progression seems to be anger rather than tears, but for the most part it was really bad last year as he .was progressing into full time wheelchair use, now in a chair he gets angry, and asks about research, and what we hope it will do for him, we just make a point of being honest. cody probably met some kids further along than him ( or even in a chair that didnt have dmd, that happened when austin went to camp) he may have evn had conversations with other kids and found out whats going to happen. i would focus on what he can do, even without walking, and allow him to express his sadness, without letting it take over. we let austin be angry, but still expect him to behave like any other kid. its so hard to watch them get upset, but they have a reason to get upset.
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Permalink Reply by cheryl cliff on
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We have Jennifer. Our son is will be 12 in a month and gets depressed every time he notices physical abilities going out the window. We try to keep a positive attitude and outlook as much as possible but its difficult 100% of the time. We just try to prop him back up and keep going, the only choice on the menu right now.
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Permalink Reply by Ian Anthony Griffiths on
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I'm 25 with DMD and have definitely been through depression. I can say most of us don't discuss everything that upsets us because you're right we are worried you'll get upset. I know myself I bottled stuff up and it really got me down. Lately I just write down how I feel and what i'm thinking, we definitely need to express it and get it out of our systems. Also don't be afraid to ask for medication. So far I always get out of those down periods. Being creative helps too, painting/digital painting calm you, but if music or writing is their thing go for it. Also starting collections is fun.
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Permalink Reply by jessica santini on
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franky is five years old and its going trew alot of emotions dont know if its depression or just the fact that hes trying to understand whats happening to hes little body, we found out that he has dmd sept 14 2009 and hes already has gone trew surgery to lenghten hes achilles tendon and is having to wear afo's all day and needs to use a wheelchair when its long distances, he doesnt want to go out because he says peopel are going to laugh at him he dint even want to go to school because he dint want hes friends to see him wearhis braces or using hes wheelchair i try telling him that god made him special and that he has special legs and hes response to me was " i dont want to be special i dont want to have special legs i want to have legs like u and daddy " how do you explain to a little guy whats happening to hes body? any advice would be greatly appreciated thanks
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Jessica,
Does Franky understand (as much a 5 year old can) that all people have special things about them, even the ones without special legs? And that all people have strengths and weakness? Everyone is different, but we are all the same in that all have good & bad, strong & weak parts to ourselves and our lives. Some weak parts have nothing to do with legs, might be bad personalities or something that doesn't show as easily. That can be worse because that badness can be more sneaky.
Tell Franky, from my son-Alexander (age 11.5), that people don't laugh at kids in wheelchairs or with AFO's. Hasn't happened once. Please wrap your arms around Franky and give him a big hug from Alexander. And get one for yourself while you are at it.
best
cheryl
jessica santini said:franky is five years old and its going trew alot of emotions dont know if its depression or just the fact that hes trying to understand whats happening to hes little body, we found out that he has dmd sept 14 2009 and hes already has gone trew surgery to lenghten hes achilles tendon and is having to wear afo's all day and needs to use a wheelchair when its long distances, he doesnt want to go out because he says peopel are going to laugh at him he dint even want to go to school because he dint want hes friends to see him wearhis braces or using hes wheelchair i try telling him that god made him special and that he has special legs and hes response to me was " i dont want to be special i dont want to have special legs i want to have legs like u and daddy " how do you explain to a little guy whats happening to hes body? any advice would be greatly appreciated thanks
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thank you cheryl and alexander i will defenitly give him alexanders message and thank you both for the hugs.
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Permalink Reply by Penny Hauer on
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cody and caleb sound so much alike.he nearly drown iim swim the pooltwo sundays ago I just wanted to know if it was his lungs or just getting weaker. So we went to MDA clinic. they are very nice people but do not have alot of knowledge. His lungs are at 70% not sure what that means. and yes he is much weaker than 4 months ago. ok should I let his swim they never go out without an adult and she did pull him out on sun. his lips and fingers were blue.Caleb will not go to camp at all I think it is because he doesnot want to see what happens in the passing years. he will walk until there is an strenth left. Im not sure he is depressed bit I see periods of angery behavior.He does love his xbox 360 grandparents got for him. we cant afford the games as they run about 60 to 70 dollars. he also likes legos. does cody have alot of friends? caleb has only one and he moved right before school started. it is my hope that we can stay in touch as I so need a friend to talk to.Im going thur what I call silent screams I can not let caleb know how I feel cause he would fall apart. I do pray alot but talking to someonn who gets it is wonderful hope to hear from you soon. Penny excuse misspelled words Im very tired. Penny
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Permalink Reply by Michael Piacentino on
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Our son is 17, never showed any signs of depression or anger, pretty much diagnosed at age 4 and went along with all the therapies, supplements, medications, night splints, etc. He's still walking unaided just walks funny now because of the weakness in the hips. No kid wants to stop walking ( I hope) and that's good, that in itself will help him to keep going and be strong, it's ok to be angry and fight against the effects of the disease. That's powerful medicine, also helps if you go along with that, and support him that way he knows that he's not alone in the fight. Anyway, I guess after all these years we've been lucky that he's not totally wacko from all the doctor visits, travel to clinics and pushy parents.
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