My ex-husband is not doing what's in Lane's best interest regarding DMD...what can I do?

My son Lane is 9 and has DMD he goes to his Dad's alot..2days with me..2 with him..then 3 here 3 with him and so on. I know he does not give his meds like he should..I always run out way before he does. And he lets him stay up way too late..like midnight or later. Its always tough when he comes home Sunday nights because he has been playing with hid older cousin and they stay up too late. Needless to say I am the monster..cause he doesn't want the fun to end and he is SO exhausted he is nasty to me. Says I am mean..its no fun at my house on and on. It breaks my heart! I know I need to take legal action but I can't afford it. Its all I can do to get by. I do not get child support..because at the time we split I made as much as him (but I had to quit work from the stress of DMD) and he said he would do right by the kids. He has yet to pay his part of the Deflazacort! Anyway..wanted to see if anyone else has gone through this or if anyone had suggestions.

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Perhaps he should be told that withdrawing the steroids could cause adrenal crisis, which is a life threatening condition. It's nothing to toy around with. I don't know if he's the type who would comply if you showed him what could happen, but withholding the meds is unacceptable and he needs to understand that.

As for the other issues, I wish I could offer some advice. DMD does horrible things to couples, rips families apart if you're not careful. If it's any consolation, Ewan tells both me and his mother that he hates us and that we're idiots almost every day. Part of it is his age (he's 9 too) and part is the steroids. You've got to just grow thick skin and be confident in the fact that you are doing what's best for him.
He knows all that..but I guess maybe I should print him some info and maybe he won't feel like its me fussing at him. Even when we discuss his eating, which is really becoming an issue as well, he says he feels bad for telling him he can't have this or that..makes him feel like he is being mean! I told him he can't look at it that way. He has to see that we do these things because we know its in Lane's best interest. You are so right about it ripping famalies apart..It was a factor in ours for sure. He wanted to ignore..and I was consumed by it..always reading research etc. He said I was obsessed!

Your right about the outbursts..and I try to always remember what he has to deal with day after day. The meds, fatigue, pain, ridicule, etc.

Thanks for reminding me I am not the only parent with a 9 yr old who insists I am evil!

Jerry Dallapè said:
Perhaps he should be told that withdrawing the steroids could cause adrenal crisis, which is a life threatening condition. It's nothing to toy around with. I don't know if he's the type who would comply if you showed him what could happen, but withholding the meds is unacceptable and he needs to understand that.

As for the other issues, I wish I could offer some advice. DMD does horrible things to couples, rips families apart if you're not careful. If it's any consolation, Ewan tells both me and his mother that he hates us and that we're idiots almost every day. Part of it is his age (he's 9 too) and part is the steroids. You've got to just grow thick skin and be confident in the fact that you are doing what's best for him.
i dealt with this with my two boys' dad years ago, i ended up convincing a judge to grant a restraining order and supervised visits only due to him not following doctors advice (making the boys walk stairs, because he lived on the third floor, feeding them terrible foods, not doing meds, and even not understanding duchenne) it worked, but the down side is he decided not to do the visits, it has been 5 years since he saw the boys. it was a hard choice, but i am now married to a man who is truely my partner in this. you have to take care of your boy, and you know what is best. good luck

Amy Kendrick said:
He knows all that..but I guess maybe I should print him some info and maybe he won't feel like its me fussing at him. Even when we discuss his eating, which is really becoming an issue as well, he says he feels bad for telling him he can't have this or that..makes him feel like he is being mean! I told him he can't look at it that way. He has to see that we do these things because we know its in Lane's best interest. You are so right about it ripping famalies apart..It was a factor in ours for sure. He wanted to ignore..and I was consumed by it..always reading research etc. He said I was obsessed!

Your right about the outbursts..and I try to always remember what he has to deal with day after day. The meds, fatigue, pain, ridicule, etc.

Thanks for reminding me I am not the only parent with a 9 yr old who insists I am evil!

Jerry Dallapè said:
Perhaps he should be told that withdrawing the steroids could cause adrenal crisis, which is a life threatening condition. It's nothing to toy around with. I don't know if he's the type who would comply if you showed him what could happen, but withholding the meds is unacceptable and he needs to understand that.

As for the other issues, I wish I could offer some advice. DMD does horrible things to couples, rips families apart if you're not careful. If it's any consolation, Ewan tells both me and his mother that he hates us and that we're idiots almost every day. Part of it is his age (he's 9 too) and part is the steroids. You've got to just grow thick skin and be confident in the fact that you are doing what's best for him.
Jenn...did you get a lawyer? Thats my other issue, I can't afford one and when I try through the low income they tell me how backed up they are!

jenn said:
i dealt with this with my two boys' dad years ago, i ended up convincing a judge to grant a restraining order and supervised visits only due to him not following doctors advice (making the boys walk stairs, because he lived on the third floor, feeding them terrible foods, not doing meds, and even not understanding duchenne) it worked, but the down side is he decided not to do the visits, it has been 5 years since he saw the boys. it was a hard choice, but i am now married to a man who is truely my partner in this. you have to take care of your boy, and you know what is best. good luck

Amy Kendrick said:
He knows all that..but I guess maybe I should print him some info and maybe he won't feel like its me fussing at him. Even when we discuss his eating, which is really becoming an issue as well, he says he feels bad for telling him he can't have this or that..makes him feel like he is being mean! I told him he can't look at it that way. He has to see that we do these things because we know its in Lane's best interest. You are so right about it ripping famalies apart..It was a factor in ours for sure. He wanted to ignore..and I was consumed by it..always reading research etc. He said I was obsessed!

Your right about the outbursts..and I try to always remember what he has to deal with day after day. The meds, fatigue, pain, ridicule, etc.

Thanks for reminding me I am not the only parent with a 9 yr old who insists I am evil!

Jerry Dallapè said:
Perhaps he should be told that withdrawing the steroids could cause adrenal crisis, which is a life threatening condition. It's nothing to toy around with. I don't know if he's the type who would comply if you showed him what could happen, but withholding the meds is unacceptable and he needs to understand that.

As for the other issues, I wish I could offer some advice. DMD does horrible things to couples, rips families apart if you're not careful. If it's any consolation, Ewan tells both me and his mother that he hates us and that we're idiots almost every day. Part of it is his age (he's 9 too) and part is the steroids. You've got to just grow thick skin and be confident in the fact that you are doing what's best for him.

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